Medical Treatment: Decisions and the Law 9781526516558, 9781526516589, 9781526516572

Table of contents :
Introduction
Contents
Table of Statutes
Table of Statutory Instruments
Table of Cases
Table of European Legislation
Table of International Legislation
Part 1 General Principles
1 Consent – General
A Framework
B Information about risks
C Vitiating factors
D Scope of authority
E Duration of authority
F Withdrawal of authority
G Conclusion
2 Consent & Capacity – Adults
A Adult
B General rules
C Capacity
D Consent
E Refusal
F Change of mind
G Advance decisions
H Conclusion
3 Deciding for Others – Adults
A The court’s jurisdiction
B General rules
C Decision making for adults under the MCA
D The court’s powers under its inherent jurisdiction relating to vulnerable adults
E Conclusion
4 Deciding for Others – Children
A Framework
B The child’s ability to give valid consent
C The child’s ability to refuse
D Parents and those with parental responsibility
E Best interests
F Further considerations
G Procedure
H Mental Health Act 1983
I Conclusion
5 Restraint and Deprivation of Liberty
A Introduction
B Restraint
C Deprivation of liberty
D Authorising a deprivation of liberty
E The Mental Capacity (Amendment) Act 2019
F Practical issues
G Conclusion
6 Going to Court
A Introduction
B Should you go to court ?
C Identifying the right court for medical treatment cases
D Procedural points common to the Court of Protection and the High Court
E The Court of Protection
F The High Court’s jurisdiction in relation to minors
G The High Court’s inherent jurisdiction – in relation to ‘vulnerable adults’
H Conclusion
7 Access to Healthcare – Choice
A Introduction
B General principles
C The NHS Constitution
D NHS primary care
E Referral to NHS secondary care
F The Human Rights Act 1998
G Discrimination
H Conclusion
8 Access to Healthcare – Funding
A Introduction
B The National Health Service
C Statutory duties to provide healthcare in England
D Court decisions about access to healthcare
E Conclusion
Part 2 Specific problems
9 Abortion
A Statutory framework
B Particular issues of compliance wih the Abortion Act 1967 conditions
C The patient’s consent
D Conclusion
10 Sterilisation and Contraception
A General
B The capacitous patient
C Adults
D Children
E Conclusion
11 Assisted Reproduction
A Introduction
B The components of the regulatory regime
C Licensing regime
D Consent
E Conscientious objection
F Birth mother
G The welfare clause
H Posthumous gamete use
I Preimplantation genetic screening
J Surrogacy
K Conclusion
12 Pregnancy and Childbirth
A Introduction
B The legal background
C The Court of Appeal and Court of Protection guidelines
D A suggested procedure for obstetric units
E Procedure for patients
F Conclusion
13 Feeding
A Introduction
B Children
C Adults
D Conclusion
14 Religious Observance and Objections to Treatment
A Introduction
B Capacitous adults
C Incapacitous adults
D Children
E Procedural issues
F Conclusion
15 Withdrawal and Withholding of Treatment
A Introduction
B Vs: Legal principles
C Diagnosis of PVS and MCS
D Role of the family
E Is an application to court required?
F Application to court
G Emergency cases
H Doctors who disagree in principle
I Children
J Mediation
K Conlusion
16 The Right to Die?
A Introduction
B The present context
C ECHR challenges
D Potential legislative change
E End of life care
F The law as it stands
G The future
17 Treating Suicidal Patients
A Introduction
B Basic definition
C Suicide Act 1961
D Refining the definition of suicide: failure to treat or feed?
E General principles: autonomy
F Patient autonomy versus liability for failing to act
G European Convention on Human Rights: duty to preserve life
H European Convention on Human Rights: the balance to be struck
I Practical problems
J Compulsorily detained patients
K Guidance on approach to treatment
L Conclusion
18 The End of Life
A The definition of ‘death’
B The diagnosis of death
C After death
D Application of ‘work and skill’ exception
E Right of possession and disposal
F The use and storage of human bodies and tissues
G Conclusion
19 Human Organ and Tissue Donation
A Introduction
B The common law
C The Human Tissue Act 2004
D Conclusion
Appendix 1 Mental Capacity Act 2005
Appendix 2 Consent form 1 (sample)
Appendix 3 Overview of current deprivation of liberty safeguards
Appendix 4 Applications Relating to Medical Treatment: Guidance authorised by the Honourable Mr Justice Hayden, the Vice President of the Court of Protection
Appendix 5 Practice Note: The Official Solicitor to the Senior Courts: Appointment as Litigation Friend in Personal Welfare Proceedings in the Court of Protection (including Serious Medical Treatment Cases) and Appointment as Advocate to the Court
Appendix 6 Court of Protection Guidance: FG
Index

Citation preview

Medical Treatment: Decisions and the Law The Mental Capacity Act in Action

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Medical Treatment: Decisions and the Law The Mental Capacity Act in Action Fourth Edition Editors: Christopher Johnston QC Sophia Roper QC Authors: James Berry Louisa Brown Neil Davy Bridget Dolan QC Elizabeth Fox Rachael Gourley Rhys Hadden Caroline Hallissey Clare Hennessy Michael Horne QC Nageena Khalique QC David Lawson Jemma Lee

Jamie Mathieson Frances McClenaghan Angus Moon QC Michael Mylonas QC Debra Powell QC Susanna Rickard Anthony Searle Sarah Simcock Emma Sutton George Thomas Anna Tkaczynska Michael Walsh Claire Watson QC Oliver Williamson

All from Serjeants’ Inn Chambers, London: serjeantsinn.com/newsand-resources/medical-treatment-decisions/ First edition by: Robert Francis QC & Christopher Johnston QC

BLOOMSBURY PROFESSIONAL Bloomsbury Publishing Plc 50 Bedford Square, London, WC1B 3DP, UK 1385 Broadway, New York, 10018, USA 29 Earlsfort Terrace, Dublin 2, Ireland BLOOMSBURY and the Diana logo are trademarks of Bloomsbury Publishing Plc © Bloomsbury Professional, 2022 All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage or retrieval system, without prior permission in writing from the publishers. While every care has been taken to ensure the accuracy of this work, no responsibility for loss or damage occasioned to any person acting or refraining from action as a result of any statement in it can be accepted by the authors, editors or publishers. All UK Government legislation and other public sector information used in the work is Crown Copyright ©. All House of Lords and House of Commons information used in the work is Parliamentary Copyright ©. This information is reused under the terms of the Open Government Licence v3.0 (http://www.nationalarchives.gov.uk/ doc/open-government-licence/version/3) except where otherwise stated. All Eur-lex material used in the work is © European Union, http://eur-lex.europa.eu/, 1998–2022. British Library Cataloguing-in-Publication Data A CIP Catalogue record for this book is available from the British Library. ISBN  PB: 978 1 52651 655 8 ePDF: 978 1 52651 657 2 ePub: 978 1 52651 656 5 Typeset by Compuscript Ltd, Shannon

To find out more about our authors and books visit www.bloomsburyprofessional.com. Here you will find extracts, author information, details of forthcoming events and the option to sign up for our newsletters

To Charlie Marriage

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Introduction

How the law deals with the issues surrounding medical treatment decisions speaks volumes about the values and morals of our society. It relates to the very essence of life. How rigorously do we protect people’s autonomy? Who do we choose to protect from themselves? Who do we leave free to make what may be irrational decisions about their bodies or their very existence? What matters to us in defining whether a life is worth living? And, fundamentally, what is life? When does it begin? When does it end? This book addresses those issues in the context of a practical legal guide. Our aim is simply to set out the law. As barristers we do not seek to provide our views on the ethics underlying the decisions the courts have taken and on the statutory approach adopted by Parliament. There are many excellent texts which wrestle expertly with those ethical dilemmas. We simply say here that, in our opinion, the law as it currently stands – in general – reflects a mature democratic compromise between the need to protect those who cannot protect themselves and the fundamental human right of personal autonomy. This fourth edition required a significant rewrite of all chapters and in particular the chapters on Consent and Capacity, Deciding for Others – Children, Going to Court and Withdrawal and Withholding of Treatment. We have expanded chapters on Deciding for Others – Adults, Sterilisation & Contraception and Religious Observance and Objection to Treatment. We have added new chapters on the Right to Die and Access to Healthcare – Choice, recognising that increased public debate about these areas readily translates into increased demand for public law challenges to decisions which go against people’s wishes and expectations. Since the third edition of this book in 2016, there have been four Supreme Court cases with direct impact on the book’s subject matter: N v ACCG,1 confirming the limits on the powers of the Court of Protection; An NHS Trust v Y2 confirming that not every decision to withdraw life sustaining treatment requires court approval; Re D (a Child),3 confirming parents cannot consent to the deprivation of a 16/17 year old’s liberty, and most recently A Local Authority v JB,4 addressing (for the first time in the Supreme Court) the assessment of capacity. These are analysed in the body of this book. The underlying approach of the judiciary to the law in this area has also continued to develop in line with a more modern, rights based approach. We commented in the previous edition on the judiciary’s increased focus on the promotion of individual autonomy, recognising that this itself is a facet of protecting the

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Introduction rights of an incapacitous or otherwise vulnerable individual. This trend has continued strongly since then, particularly under the new Vice President of the Court of Protection, Sir Anthony Hayden. Court of Protection judgments routinely record an intense scrutiny of not only the overt wishes, but also the underlying beliefs and values of the person at the centre of the proceedings. The need for remote hearings occasioned by the Covid-19 pandemic has enabled many of these individuals to join in hearings and speak to the judge directly, and their active participation in proceedings is increasingly common. All of this is greatly to be welcomed. In addition, the growing public interest in the work of the Court of Protection has developed the culture of openness and transparency which many of those who practice in this area would say was always there, despite media suggestions to the contrary. The pandemic allowed members of the public to watch remote hearings, and see for themselves the important work which this court does; many of those have in turn blogged about it to the wider world. While much of this progress has been positive, some media coverage has been less positive, especially in widely publicised cases of disagreement between doctors and parents about a child’s best interests where the child has been named. It is impossible to imagine the anguish felt by parents in the situation of those at the centre of these cases; it is sadly necessary for some to seek publicity to raise funds, and unsurprising that some are simply enthusiastic about publicity in support of their cause. This has, however, led to real difficulties for some clinical staff struggling to provide care for all their patients, and caused great anxiety to hospital managers wishing to ensure they can do so without unhelpful distraction. This book is in four sections. First, we consider general principles and procedures. We provide a guide to the legal principles underlying patient autonomy, advance decisions and the treatment of those without capacity (whether children or adults). We explain the legal tests and processes should a treatment dilemma reach court. We then address deprivation of liberty and restraint, an issue which arises in many of these cases, and going to court, covering the procedure for both adults and children. Secondly, we address the vital question of the judicial approach to access to healthcare. Thirdly, we have fully updated specialist chapters which consider the particular problems the authors have dealt with in the High Court and Court of Protection including cases involving abortion, sterilisation & contraception, assisted reproduction, pregnancy & childbirth, feeding, religious observance & objections to treatment, withdrawal & withholding of treatment, the right to die, treating suicidal patients, end-of-life decisions, and – finally – human organ and tissue donation. Fourthly, appendices set out some additional materials. We will post additional appendices and updates in this ever-changing area of law on our website: www.serjeantsinn.com/news-and-resources/medical-treatmentdecisions/. A large part of this book is comprised of the insight its authors have gained through practical experience. If you have any suggestions or corrections for our updates or for the next edition of the book please email [email protected].

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Introduction We continue to be awed and impressed by the ceaseless work of the Official Solicitor, Sarah Castle, and her incredibly dedicated team. They always approach their work with enthusiasm, huge expertise, and determination to achieve the best interests of those they are called upon to represent. Despite the pressure of time in urgent applications and severe restrictions on their budget, they still work tirelessly and sensitively in these difficult medical ethics cases to ensure that the proper investigations are carried out, the difficult questions fully answered, and those who cannot instruct their own solicitors can participate in the proceedings to the fullest extent they wish. We were deeply saddened by the untimely death of Alistair Pitblado, who had served as Official Solicitor to the Senior Courts from his appointment in 2006 until his death on 24 June 2018. Over a tenure spanning the period from preimplementation of the Mental Capacity Act until the decision of the Supreme Court in Re Y (the hearing of which he attended despite being already seriously ill), Alastair brought to the role an intellectual rigour of mind, a compassion for the vulnerable, and a determined independence of thought. Although a civil servant, he always said that when asked by higher powers to jump, his instinct was to say “why?” and not “how high?” – and he relished the independence of the role, which allowed him to champion the rights of vulnerable people as he saw best. He did so perhaps most notably in his appeal to the Supreme Court in Cheshire West, which transformed our understanding of deprivation of liberty and ensured the proper protection of the rights of disabled people in this area of law. He held similarly strong views on his role as litigation friend, which he described in one statement as “difficult, sensitive and burdensome”. Alastair recognised that it is a job requiring true “moral courage”, since only by carefully considering what are the realistic arguments in a case, and advancing those (rather than simply saying what the protected party wants, although this too is part of the role), can the litigation friend properly protect the rights of those lacking capacity to conduct proceedings for themselves. Within the office, those who worked with him, as Sophia did, will remember his staunch defence of his team from any outside criticism, and his kindness and support to those just starting out. He is greatly missed. Thank you to all at our publishers, Bloomsbury Professional, for their continuing support. Thanks so much, in particular, to Kiran Goss, Jenny Lank, Rosamund Jubber and the incredibly patient Kacey Mann. Thanks to all the contributors to the book for their work and their polite responses to our continual late-night email queries. A special thanks go to Bridget Dolan QC and Debra Powell QC for their hard work which was well above and beyond the call of duty. Thanks to all our staff in particular Catherine Calder and all those in the client care team who have supported the marketing of the book. We would also note the continual work and enthusiasm of our clerks in helping us manage these challenging medical ethics cases in court, often having to arrange hearings or communications at very unsociable times. We would give a special mention here to Lee Johnson and Tom O’Connor for their continual cool-headed support in these cases.

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Introduction Thanks also to all of those who have helped our thinking about the issues and procedures considered in this book. Suffice to say, however, that all the views expressed are entirely those of the authors and not those who gave us their time so freely. Last, heartfelt thanks to both our families for their support and endless patience. Christopher Johnston QC and Sophia Roper QC Serjeants’ Inn Chambers May 2022 1 2 3 4

[2017] UKSC 22. [2018] UKSC 46. [2019] UKSC 42. [2021] UKSC 52.

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Contents

Introduction vii Table of Statutes  xxvii Table of Statutory Instruments  xxxiii Table of Cases  xxxvii Table of European Legislation  lxvii Table of International Legislation  lxix Part 1  General principles 1 Consent – General A Framework 1.1 Introduction 1.1 Proposal to treat  1.3 Formulation of proposal  1.3 Risks of treatment  1.4 Considering alternative forms of treatment  1.5 Compelling a doctor to treat  1.6 Irrational decisions by care providers to refuse treatment  1.7 Resources 1.8 Treatment demanded by the patient  1.9 Communication of the proposal  1.10 Consent – state of mind  1.13 Intention 1.13 Comprehension 1.14 Communication of consent  1.15 Written consent  1.16 Oral consent  1.17 Conduct 1.18 B Information about risks  1.19 No doctrine of informed consent in relation to trespass to the person 1.19 Duty of care – common law position  1.20 The test of materiality  1.21 Duty to respond to specific needs of patient  1.22 Application of Montgomery 1.23 Article 8  1.24 Delegation 1.25 Duty to answer questions  1.26 Information about alternative forms of treatment  1.27 xi

Contents Known comparative outcomes  1.28 Vitiating factors  1.30 Fraud 1.31 Duress and undue influence  1.32 Capacity 1.33 D Scope of authority  1.34 E Duration of authority  1.35 F Withdrawal of authority  1.37 G Conclusion 1.38 C

2 Consent & Capacity – Adults A Adult 2.1 B General rules  2.2 General rule 1: A capacitous adult’s wishes must be respected  2.2 General rule 2: There is only limited proxy of consent for others  2.3 General rule 3: Power to treat in an incapacitous person’s best interests 2.4 C Capacity 2.5 Presumption of capacity  2.5 Definition of capacity  2.6 The specific decision  2.8 Capacity is decision-specific: what must be considered is capacity to make the specific decision that has to be made  2.8 The relevant information  2.9 Key to any assessment of capacity is the identification of the information relevant to that specific decision  2.9 Establishing capacity to consent, as opposed to obtaining ‘informed consent’ 2.10 The ‘limbs’ of the functional test in section 3  2.11 (a) Understanding the relevant information  2.11 (b) Retaining the relevant information  2.12 (c) Using and weighing the relevant information  2.13 (d) Communicating the decision  2.15 Unwise or irrational decisions  2.16 The assessment of capacity  2.17 Key principles in determining capacity  2.17 The steps to be taken to assess capacity  2.18 Guidance on the assessment  2.19 Recording capacity assessments  2.20 The court makes the decision  2.21 Temporary incapacity  2.22 Anticipated loss of capacity – Guy’s and St Thomas’s NHS Foundation Trust v R 2.23 D Consent 2.24 The absolute nature of an adult’s consent  2.24 Treatment must be lawful  2.25 The obligation to treat in accordance with expressed wishes  2.26 E Refusal 2.27 Capacitous decisions to refuse treatment that may accelerate death  2.28 Case of Ms C 2.29 Obstetric treatment in the interests of a viable foetus no exception  2.30 xii

Contents F G

Change of mind  2.31 Advance decisions  2.32 General principle  2.32 Advance decisions under the MCA  2.33 Validity 2.34 Applicability 2.35 Advance decisions and MHA s 63  2.37 Form 2.38 Informed refusal?  2.39 Knowledge 2.40 Duration 2.41 Records 2.42 H Conclusion 2.43 3 A B

C

Deciding for Others – Adults The court’s jurisdiction  3.1 The historial context  3.2 General rules  3.3 General rule 1: A capable adult’s wishes must be respected  3.3 Exception: Mental Health Act 1983, s 63  3.4 Case law on the MHA  3.5 General rule 2: There is only limited proxy of consent for others  3.9 General rule 3: There is a power under the MCA to treat in an incapacitous person’s best interests  3.10 Doctrine of necessity  3.11 Decision making for adults under the MCA  3.12 Principles 3.12 Determination of best interests – overview  3.13 Holistic/wider best interests  3.14 ‘Analysis of Competing Issues’   3.15 The focus on the patient  3.18 P’s wishes and feelings, beliefs and values  3.21 Independent Mental Capacity Advocates  3.22 Consultation with other people  3.23 DNAR Notices  3.24 Sharing information  3.25 Interests of others  3.26 Financial interests  3.27 Experimental and controversial treatment  3.28 End of life – intolerability and dignity  3.29 The sanctity of life – a starting point  3.30 Advance decisions  3.31 Scope of power to treat  3.32 The power of the Court of Protection to consent to treatment  3.33 Covert administration of medication and deceit  3.34 Deception and P’s Article 8 rights  3.36 Covert insertion of contraceptive devices?  3.37 Does P need to be told he has been covertly medicated?  3.38 Covid-19 vaccination case law  3.39 Where vaccination not in P’s best interests  3.40 ‘Booster’ shots  3.41 xiii

Contents D

The court’s powers under its inherent jurisdiction relating to vulnerable adults 3.42 E Conclusion 3.45 4 Deciding for Others – Children A Framework 4.1 B The child’s ability to give valid consent  4.2 General principle  4.2 Children of 16 years of age and over  4.3 The Family Law Reform Act 1969  4.3 Children aged 16–17 – capacity  4.4 Children under the age of 16 – Gillick competence  4.5 Bell v Tavistock 4.6 Who determines competence?  4.7 Gillick competence and best interests  4.8 C The child’s ability to refuse  4.9 A refusal by a minor of any age can be overridden by the court  4.10 Compulsory treatment and children’s rights  4.11 European Convention on Human Rights  4.11 United Nations Convention on the Rights of the Child  4.12 Re X (A Child) (No 2) 4.13 The refusal of a capacitous minor of 16–17 or a Gillick competent child cannot be overridden by the consent of a parent  4.14 Children under the age of 16 not possessing Gillick competence  4.15 D Parents and those with parental responsibility  4.16 Power to consent  4.16 Where parental consent is given but a court application may still be required 4.17 Disputes between parents  4.18 Disputes between parents and local authorities with parental responsibility 4.19 E Best interests  4.20 The court – and consideration of alternative dispute resolution  4.20 The approach to best interests  4.21 The key principles – Fixsler 4.22 The views of the minor  4.23 The views of parents  4.24 Parental rights  4.25 Legal challenges to the best interests test: Charlie Gard and Alfie Evans 4.26 Pippa Knight 4.27 Alta Fixsler 4.28 Cases where parental views have prevailed  4.29 Tafida Raqeeb 4.30 Participation of parents  4.31 F Further considerations  4.32 Treatment of very young children  4.32 Deliberate killing – the conjoined twins case  4.33 Withholding and withdrawing life-sustaining treatment  4.34 Withholding treatment  4.34 Withdrawing treatment  4.35 xiv

Contents Providing treatment  4.36 Preservation of life: vitally important but not determinative   4.37 Pain 4.38 Dignity 4.39 Balance sheet  4.40 G Procedure 4.41 Practical tips  4.42 H Mental Health Act 1983  4.43 Admission to hospital  4.43 Young people aged 16–17 and Gillick competent children  4.43 Treatment 4.44 Mental Health Act 1983: Code of Practice  4.44 I Conclusion 4.45 5 Restraint and Deprivation of Liberty A Introduction 5.1 B Restraint 5.8 Restraint permitted under the MCA  5.11 The statutory defence  5.11 Limits to the statutory defence  5.14 Necessity 5.15 Proportionality and restraint  5.16 Restraint and Article 3 ECHR  5.18 Covert medication and deception  5.23 C Deprivation of liberty  5.24 Background: ‘the Bournewood gap’  5.24 What is a ‘deprivation of liberty’?  5.29 Cheshire West 5.29 The position prior to the Supreme Court decision in Cheshire West 5.30 The ECtHR definition  5.32 The decision in Cheshire West 5.35 The facts in MIG and MEG  5.35 The facts in P v Cheshire West 5.38 The reasoning in Cheshire West 5.40 Identifying a deprivation of liberty: ‘a gilded cage is still a cage’ 5.45 The acid test  5.52 The impact of the decision in Cheshire West 5.53 Identifying a potential deprivation of liberty in the hospital context 5.55 Place and duration of the patient’s stay  5.59 Deprivation of liberty for serious medical treatment: NHS Trust v FG 5.61 Admission to an intensive care unit: R (Ferreira) v HM Senior Coroner for Inner South London 5.67 Ferreira in the Court of Appeal  5.68 Children and deprivation of liberty  5.70 Children under 16  5.70 Minors of 16–17 years  5.72

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Contents Pointers for practitioners considering unclear cases  5.74 Is there a deprivation of liberty?  5.74 Contingency declarations  5.79 D Authorising a deprivation of liberty  5.80 Procedure 5.84 MCA/Inherent jurisdiction?  5.85 Review 5.86 DOLS authorisation  5.88 Is the patient ineligible to be detained under the MCA?  5.93 E The Mental Capacity (Amendment) Act 2019  5.105 Section 4B – Life-sustaining treatment or vital act  5.106 Schedule AA1 – the LPS regime  5.107 F Practical issues  5.115 G Conclusion 5.120 6 Going to Court A Introduction 6.1 B Should you go to court?  6.2 Practice Guidance whether an application is necessary  6.5 Summary of what constitutes a deprivation of liberty  6.8 Key considerations before an application is made to the Court of Protection for adult patients   6.9 DNAR: specific issue  6.10 Key considerations before a court application is made for child patients (when the High Court is asked to exercise its inherent jurisdiction) 6.11 C Identifying the right court for medical treatment cases  6.13 Courts with jurisdiction to deal with medical treatment cases  6.13 The jurisdiction of the Court of Protection  6.14 Cases in which the Court of Protection lacks jurisdiction/cases which need to go to the High Court  6.15 16 to 17 year olds: overlap of the jurisdiction of the Court of Protection and the High Court  6.16 Different age cut-offs for different types of case  6.17 Summary 6.18 D Procedural points common to the Court of Protection and the High Court 6.19 Public law issues  6.19 The timing of proceedings  6.20 How urgent is it?  6.22 Who should bring proceedings?  6.23 What does the party bringing the proceedings want?  6.25 Participation of P (the patient)  6.26 Does the patient need to be a party to proceedings?  6.27 The patient’s views on participation, and meeting the judge  6.28 The Official Solicitor and CAFCASS   6.29 Documentation 6.31 Bundles 6.31 Orders and position statements  6.32

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Contents Hearings 6.33 Typing up the order   6.34 E The Court of Protection  6.35 Location and judges  6.36 Sources of procedural rules and guidance  6.37 The court’s general approach  6.38 The court’s powers to make medical treatment decisions  6.39 Privacy and publicity – general issues  6.40 Court of Protection proceedings  6.41 Publication of judgments  6.42 Points to consider before starting proceedings  6.43 Pre-issue steps  6.43 Litigation friend  6.44 Is permission required?  6.47 Who should be named as respondents and who should be notified of the proceedings?  6.48 Level of judge  6.49 Starting proceedings – non-urgent  6.50 How are proceedings started?  6.50 Starting proceedings – urgent  6.52 First hearing and subsequent directions hearings  6.58 Final hearings  6.59 Costs 6.60 Costs of Official Solicitor  6.61 Appeals 6.62 F The High Court’s jurisdiction in relation to minors  6.63 The High Court generally  6.63 The High Court’s jurisdiction  6.63 Regional hearings  6.64 Procedure and rules  6.65 What cases should be brought to court?  6.66 General issues  6.66 Parental issues  6.68 Local authority issues  6.69 Imposing treatment despite competent refusal  6.70 Who should be the respondents?  6.75 Body responsible for treatment or care  6.75 The child?  6.76 Parents? 6.77 Local authority  6.78 Starting proceedings – non-urgent  6.79 Starting proceedings – urgent  6.81 Privacy and publicity  6.82 First hearing and subsequent directions hearings  6.83 What to expect at a final hearing  6.84 Costs 6.86 Appeals 6.87 G The High Court’s inherent jurisdiction – in relation to ‘vulnerable adults’ 6.88 H Conclusion 6.89

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Contents 7 Access to Healthcare – Choice A Introduction 7.1 B General principles  7.2 Private medical treatment  7.2 Clinical alternatives  7.3 Second opinions  7.4 The clinician’s veto  7.5 Consideration of resources available to other patients  7.7 Organ donation and transplant  7.8 C The NHS Constitution  7.9 D NHS primary care  7.10 The right to choose a GP practice  7.10 The right to express a preference for a particular GP  7.11 Face-to-face consultations  7.12 E Referral to NHS secondary care  7.13 Eligibility 7.13 Choice as to nature of secondary care subsequently provided  7.15 Choices by the CCG  7.16 The personal health budget  7.17 F The Human Rights Act 1998  7.20 Article 8  7.21 Article 3  7.23 Article 2  7.26 Article 14  7.28 G Discrimination 7.29 Discrimination in the provision of services  7.30 Direct and indirect discrimination  7.31 Reasonable adjustments for disability  7.34 A clinician’s personal beliefs  7.35 The Public Sector Equality Duty  7.36 H Conclusion 7.37 8 Access to Healthcare – Funding A Introduction 8.1 B The National Health Service  8.2 The system in January 2022  8.3 The proposed changes  8.4 C Statutory duties to provide healthcare in England  8.5 The Secretary of State  8.5 NHS England and clinical commissioning groups  8.6 Reasonable requirements in England and Wales  8.7 Which CCG is responsible?  8.8 Services for people from other countries and other parts of the UK 8.10 Charges for healthcare  8.11 Access to the NHS  8.14 The NHS Constitution  8.16 The role of NICE in approving drugs and other treatments  8.17 Individual decision-making by NHS England and CCGs  8.18 Local Authorities, social care and public health  8.19

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Contents D

Court decisions about access to healthcare  8.23 Will a court require doctors or NHS bodies to provide treatment?  8.23 What is the applicable jurisdiction?  8.24 Will a court require that money be spent on a particular treatment? 8.26 Human rights  8.27 Policy and guidance challenges  8.28 Equality law  8.29 Exceptionality 8.30 Clinically effective  8.34 Obtaining and interpreting evidence  8.35 E Conclusion 8.36 Part 2  Specific problems 9 Abortion A Statutory framework  9.1 Offences Against the Person Act 1861  9.2 Infant Life (Preservation) Act 1929  9.3 Abortion Act 1967  9.4 Human Fertilisation and Embryology Act 1990  9.5 B Particular issues of compliance wih the Abortion Act 1967 conditions 9.6 Conscientious objection  9.6 Multiple foetuses  9.7 Does the procedure have to be successful to be lawful?  9.8 Does the procedure have to be performed by a medical practitioner? 9.9 Certification of medical opinion  9.10 The grounds  9.11 Risk of injury to the mother greater than if pregnancy terminated: s 1(1)(a)  9.11 Termination is necessary to prevent grave permanent injury: s 1(1)(b)  9.15 Risk to life of pregnant woman greater than if the pregnancy were terminated: s 1(1)(c)  9.16 Substantial risk of the child being seriously handicapped from physical or mental abnormalities: s 1(1)(d)  9.17 The place of treatment  9.18 C The patient’s consent  9.19 Capacitous adults  9.20 Children 9.21 Incapacitous adults  9.22 Determining capacity: termination of pregnancy  9.23 Best interests: termination of pregnancy  9.24 Use of force: non-consensual incapacitous patients  9.28 Procedure and evidence  9.29 Making an application  9.29 Timing of the application  9.30 Important considerations for the court  9.31 D Conclusion 9.34 xix

Contents 10 Sterilisation and Contraception A General 10.1 B The capacitous patient  10.2 General rule  10.2 Informed consent  10.3 The role of partner/spouse  10.4 Procedure 10.5 C Adults 10.6 Capacitous adults  10.6 Adults lacking capacity to consent  10.7 Capacity 10.7 Best interests   10.8 General application of ‘best interests’ principle in sterilisation and contraception cases  10.9 The prospect of attaining or recovering capacity for a relevant decision 10.10 The risk of sexual contact  10.11 The availability of other methods of contraception  10.12 The need for counselling and education  10.13 The risks of pregnancy  10.14 Freedom of association and reduction of intrusion by statutory services 10.15 The effect on the standard of care  10.16 Male patients  10.17 The immediacy of the risks  10.18 Covert treatment  10.19 Procedure 10.20 D Children 10.24 General principle  10.24 Children with no learning disabilities  10.24 Children with learning disabilities  10.25 Best interests  10.26 Procedure 10.27 E Conclusion 10.28 11 Assisted Reproduction A Introduction 11.1 B The components of the regulatory regime  11.2 HFEA 1990  11.3 HFEA 2008  11.4 The European Union Tissues and Cells Directives  11.5 The post-‘Brexit’ position  11.6 SAA 1985  11.7 Directions 11.8 Code of Practice  11.9 Chair’s Letters  11.10 Chief Executive’s Letters  11.12 Guidance Notes/Policies/Manuals  11.13 C Licensing regime  11.14 Licences generally (HFEA 1990, s 11 and Sch 2)  11.14 Licence conditions (HFEA 1990, ss 12–15C)  11.15 xx

Contents D Consent 11.16 Procedure for giving consent  11.17 Import and export of gametes and embryos  11.19 Adults lacking capacity  11.22 Storage periods  11.23 Extension of storage periods  11.24 Evans – one-party withdrawal of consent pre-embryo transfer  11.25 Consent: other key cases  11.26 E Conscientious objection  11.31 F Birth mother  11.32 G The welfare clause  11.33 H Posthumous gamete use  11.34 I Preimplantation genetic screening  11.35 J Surrogacy 11.41 Counselling and the welfare clause  11.43 Parental Orders  11.46 Reform 11.53 K Conclusion 11.54 12 Pregnancy and Childbirth A Introduction 12.1 B The legal background  12.2 Patient and foetal rights in obstetrics  12.2 The caesarean section cases  12.4 The mentally competent adult patient: Re S (adult: refusal of treatment)  12.5 A solution? Re MB 12.7 Re MB: Capacity  12.8 Re MB: Reasonable force  12.9 Re MB: Interests of foetus  12.10 Re MB: Procedure  12.11 The solution imposed – St George’s Healthcare NHS Trust v S 12.12 C The Court of Appeal and Court of Protection guidelines  12.13 Court of Appeal Guidelines  12.13 Court of Appeal Guidelines with the MCA in force  12.14 Court of Protection Guidelines: NHS Trust 1 and NHS Trust 2 v FG 12.16 Court of Protection guidelines for obstetric cases: procedure and evidence 12.17 Notifying the patient  12.19 The timing of applications and delay  12.20 Planning in advance  12.21 Contingent declarations  12.22 Advance decisions  12.24 Management of pregnancy in women who are comatose or in a permanent vegetative state  12.25 Forcible transfer to hospital for delivery  12.26 D A suggested procedure for obstetric units  12.27 Assessment of capacity  12.28 Advice to patients about nature of possible treatment  12.29 xxi

Contents Discussion with patient about possible loss of capacity  12.30 Liaison between teams  12.31 Advance decisions  12.32 Psychiatric referral and assessment where capacity in doubt  12.33 Contingency planning for court application  12.34 Compliance with court guidelines  12.37 Continual advice to patient  12.38 E Procedure for patients  12.39 F Conclusion 12.40 13 Feeding A Introduction 13.1 NICE ‘Clinical Knowledge Summary for Eating Disorders’  13.2 B Children 13.3 General principles  13.3 Children under the age of 16  13.3 Children aged 16 and 17  13.4 Effect of disorder on the approach to Gillick competence  13.5 Exercise of court’s jurisdiction: general approach  13.6 Deprivation of liberty  13.7 Mental Health Act 1983  13.8 Informal admission for treatment of a mental disorder  13.9 The scope of parental authority outside the MHA  13.10 Inherent jurisdiction  13.13 Mental Capacity Act 2005  13.14 Procedure 13.15 C Adults 13.16 Capacitous adults – general rule  13.16 Capacitous adults detained under the Mental Health Act 1983  13.17 Adults lacking the capacity to consent  13.21 Treatment under the MHA  13.21 Where treatment cannot be provided under the MHA  13.22 Under the High Court’s inherent jurisdiction – Re Dr A 13.23 Under the MCA  13.24 Procedure – is an application necessary?  13.29 Procedure: Mental Health Act/Mental Capacity Act  13.30 Preparation 13.31 Procedure by the patient – injunction  13.32 D Conclusion 13.33 14 Religious Observance and Objections to Treatment A Introduction 14.1 B Capacitous adults  14.2 General principle  14.2 Power to treat under s 63 of the Mental Health Act 1983  14.3 Steps to be taken  14.4 Confirmation that the patient has the mental capacity to make the decision in question  14.5 Ability to understand the information relevant to the decision  14.6 Ability to use or weigh the information as part of the decisionmaking process  14.7 xxii

Contents Advice 14.8 Undue influence  14.9 Scope of a decision to refuse treatment  14.10 The role of relatives and close friends  14.11 Recording a decision taken against medical advice  14.12 C Incapacitous adults  14.13 General principle  14.13 Advance decisions  14.14 Reported oral advance decisions  14.15 The effect of uncertainty  14.16 Written declarations  14.17 Religious observance in incapacitous patients  14.18 Religious Ps – assumptions should not be made as to beliefs  14.19 D Children 14.20 General principle  14.20 Best interests  14.21 Religious objections to withdrawal of treatment from a child  14.22 Raqeeb 14.23 Fixsler 14.24 High Court proceedings  14.25 Court of Appeal and ECHR  14.27 Where should life support be withdrawn?  14.28 Conclusion on Fixsler 14.29 Ceiling of care cases  14.30 The ‘Gillick competent’ child  14.31 Re X (No 2) – Rolling orders  14.32 E Procedural issues  14.33 Anticipation 14.33 Notice and consultation  14.34 Evidence 14.35 Change of circumstance  14.36 F Conclusion 14.37 15 Withdrawal and Withholding of Treatment A Introduction 15.1 Prolonged disorders of consciousness (coma/VS/MCS)  15.2 B Vs: Legal principles  15.8 The Bland decision  15.9 Extending Bland to other cases  15.12 The problem with ‘act’ and ‘omission’  15.15 Continuing treatment as an assault  15.16 European Convention on Human Rights  15.17 European Convention on Human Rights: the Lambert decision  15.23 MCS: legal principles  15.29 Withdrawal of treatment in MCS  15.30 C Diagnosis of PVS and MCS  15.40 Current approach to diagnosis  15.44 ‘Permanent’ VS  15.49 Diagnosis of a minimally conscious state  15.51 Summary 15.52 D Role of the family  15.53 xxiii

Contents E

Is an application to court required?  15.55 When court approval is required to withhold nutrition and hydration 15.56 Advance decisions/prior consent  15.58 F Application to court  15.59 Confidentiality 15.60 Evidence 15.61 G Emergency cases  15.68 Critique of Frenchay approach  15.69 H Doctors who disagree in principle  15.70 I Children 15.71 Welfare of the child  15.72 Decision making in the absence of pain  15.75 Dignity 15.76 The procedural position in applications relating to children  15.81 Social media  15.82 Medical experts  15.83 Funding 15.84 J Mediation 15.85 K Conlusion 15.86 16 A B C D E F G

The Right to Die? Introduction 16.1 The present context  16.4 ECHR challenges  16.5 Potential legislative change  16.12 End of life care  16.17 The law as it stands  16.19 The future  16.22

17 Treating Suicidal Patients A Introduction 17.1 B Basic definition  17.2 What is suicide?  17.2 An act  17.3 An intention to act  17.4 An understanding of the likely consequences  17.5 C Suicide Act 1961  17.6 D Refining the definition of suicide: failure to treat or feed?  17.7 E General principles: autonomy  17.10 F Patient autonomy versus liability for failing to act  17.15 G European Convention on Human Rights: duty to preserve life  17.24 H European Convention on Human Rights: the balance to be struck 17.31 I Practical problems  17.33 J Compulsorily detained patients  17.37 K Guidance on approach to treatment  17.47 L Conclusion 17.48

xxiv

Contents 18 The End of Life A The definition of ‘death’  18.1 B The diagnosis of death  18.13 Brain stem death  18.14 Death following cessation of cardio-respiratory function  18.15 Certification and notification  18.18 The ‘process of dying’  18.19 C After death  18.27 D Application of ‘work and skill’ exception  18.30 E Right of possession and disposal  18.36 F The use and storage of human bodies and tissues  18.40 G Conclusion 18.41 19 A B C

Human Organ and Tissue Donation Introduction 19.1 The common law  19.2 The Human Tissue Act 2004  19.3 Donations by living persons  19.8 Types of living organ donation  19.9 Activities authorised by the Act  19.11 Consent 19.12 The Act  19.12 Appropriate consent and the Codes  19.13 Incapacitous adults  19.14 Children 19.15 Best interests  19.16 Approval by the Human Tissue Authority  19.17 Types of donation by living donors  19.18 Consent – children  19.19 Consent – adults  19.20 Preservation of organs after death  19.21 Preparatory steps taken before death  19.22 D Conclusion 19.23 Appendix 1 Mental Capacity Act 2005  703 Appendix 2 Consent form 1 (sample)  722 Appendix 3 Overview of current deprivation of liberty safeguards  726 Appendix 4 Applications Relating to Medical Treatment: Guidance authorised by the Honourable Mr Justice Hayden, the Vice President of the Court of Protection   727 Appendix 5 Practice Note: The Official Solicitor to the Senior Courts: Appointment as Litigation Friend in Personal Welfare Proceedings in the Court of Protection (including Serious Medical Treatment Cases) and Appointment as Advocate to the Court   733 Appendix 6 Court of Protection Guidance: FG 739 Index 745

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xxvi

Table of Statutes [References are to paragraph numbers]

A Abortion Act 1967����������   2.25, 9.4, 9.5, 9.6, 9.7, 9.8, 9.9, 9.10, 9.17, 9.18, 9.22, 9.30, 12.3, 12.10 s 1����������������������   9.2, 9.7, 9.22, 9.24, 9.28, 9.33, 12.3 s 1(1)�������������������������������������������  9.4 s 1(1)(a)��������������������   9.5, 9.11, 9.12, 9.15, 9.17, 9.24 s 1(1)(b)���������������������   9.6, 9.15, 9.24 s 1(1)(c)����������������������������   9.16, 9.24 s 1(1)(d)���������������������   4.33, 9.7, 9.17 s 1(2)�����������������������������������������  9.13 s 1(3), (3A), (4)�������������������������  9.18 s 4(1), (2)�������������������������������������  9.6 s 5(2)������������������������������������   9.2, 9.7 Administration of Justice Act 1960 s 12��������������������������������������������  6.41 s 12(1)(a)(i)�������������������������������  6.82 s 12(1)(b)�����������������������������������  6.41 s 12(4)���������������������������������������  6.41 Adoption and Children Act 2002 s 1��������������������������������������������  11.48 Anatomy Act 1984����������������������  18.40 C Care Act 2014����   6.46, 8.19, 8.36, 13.1 s 22��������������������������������������������  8.19 s 72��������������������������������������������  8.36 Children Act 1989��������   4.4, 4.13, 5.35, 6.16, 6.65, 6.82, 8.24 s 1����������������������������������������������  13.6 s 2–4������������������������������������������  4.16 s 5����������������������������������������������  4.19 s 8������������������   4.16, 4.18, 4.30, 4.41, 6.13, 6.15, 6.16, 6.63, 10.24, 13.15, 15.81 s 9����������������������������������������������  6.63 s 10(2)(b)��������������������������   4.41, 6.63 s 20��������������������������������������������  13.1 s 25����������������������   13.1, 13.11, 13.13 s 31��������������������������������������������  13.1 s 31(2)���������������������������������������  4.26

Children Act 1989 – contd s 33(3)���������������������   4.19, 4.34, 4.35 s 33(3)(a)�����������������������������������  4.19 s 33(3)(b)���������������   4.19, 4.35, 14.20 s 97��������������������������������������������  6.41 s 100������������������������������������������  4.19 s 100(3)�������������������������������������  6.69 s 105(1)�������������������������������������  6.63 Sch 1 para 16�����������������������������������  6.63 Civil Partnership Act 2004����������  11.41 Congenital Disabilities (Civil Liability) Act 1976�����   12.2, 12.10 Coronavirus Act 2020��������   9.18, 18.18 Coroners and Justice Act 2009����  18.18 s 1(2)���������������������������������������  15.60 s 4(1)(b)�����������������������������������  15.60 s 7(2)(a)�������������������������������������  5.67 s 15��������������������������������������������  4.35 s 18–21������������������������������������  18.18 s 48��������������������������������������������  5.67 Courts Act 2003 s 75(3)������������������������������   6.65, 6.88 Criminal Justice and Court Services Act 2000 s 11��������������������������������������������  6.29 Criminal Law Act 1967 s 3(1)�������������������������������������������  6.3 E Equality Act 2010���������������   7.10, 7.28, 7.29, 8.29 s 4����������������������������������������������  8.29 s 6(1)�����������������������������������������  7.34 s 15��������������������������������������������  7.31 s 17��������������������������������������������  7.31 s 20��������������������������������������������  7.34 s 21(1)���������������������������������������  7.30 s 29��������������������������������������������  7.36 s 29(1), (2)���������������������������������  7.30 s 149���������������������������������   8.13, 8.29 s 149(1)�������������������������������������  7.36 Sch 1 Pt 1����������������������������������������  7.34

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Table of Statutes F Family Law Reform Act 1969�������  4.3, 4.4, 4.5 s 8��������������������   4.3, 4.10, 6.11, 6.70, 9.21, 13.4, 14.32 s 8(3)�����������������������������������������  13.4 G Gender Recognition Act 2004���������  1.9 H Health Act 2009������������������������������  7.9 s 1(2)�������������������������������������������  7.9 Health and Social Care Act 2001 s 49��������������������������������������������  8.19 Health and Social Care Act 2012����  8.4 ��������������������������������������������������������� Pt 8 (ss 232–249)����������������������  8.17 s 234, 237����������������������������������  8.17 Human Fertilisation and Embryology Act 1990������   1.16, 9.5, 11.1, 11.2, 11.3, 11.4, 11.5, 11.25, 11.46, 12.3 s 1(4)���������������������������������������  11.14 s 2��������������������������������������������  11.14 s 2A�����������������������������������������  11.14 s 2B(4)(a), (b)����������������������������  11.6 s 3����������������������������������������������  11.1 s 3(1)���������������������������������������  11.14 s 3(1A)������������������������������������  11.14 s 3(B)���������������������������������������  11.14 s 3A�������������������������������������������  11.1 s 4�����������������������������������   11.1, 11.14 s 4(1)(a), (b)����������������������������  11.14 s 4(1A)������������������������������������  11.14 s 4A�������������������������������������������  11.1 s 4A(1)������������������������������������  11.14 s 4A(2)������������������������������������  11.14 s 11������������������������������������������  11.14 s 12����������������������   1.16, 11.15, 11.19 s 12(1)(c)���������������������������������  11.14 s 13�������������������������������   11.15, 11.19 s 13(5)������������������  11.2, 11.33, 11.33 s 14�������������������������������   11.15, 11.19 s 14(1)(c), (d)��������������������������  11.23 s 14(3), (4), (4A)���������������������  11.23 s 15������������������������������������������  11.15 s 15A–15C������������������������������  11.15 s 17������������������������������������������  11.15 s 18���������������������������������   11.2, 11.15 s 18(2)��������������������������   11.10, 11.12 s 18(2)(b)���������������������������������  11.15 s 18(2)(c)�����������������������������������  11.8 s 18A������������������������������   11.2, 11.15 s 18A(3)����  11.8, 11.10, 11.12, 11.15 s 18A(5)�����������������������   11.10, 11.12

Human Fertilisation and Embryology Act 1990 – contd s 19(6)���������������������������������������  11.2 s 19C���������  11.8, 11.10, 11.12, 11.15 s 23���������������������������������   11.8, 11.29 s 24������������������������������������������  11.27 s 24(4)������������������  11.9, 11.19, 11.21 s 24(4A)–(4F)��������������������������  11.19 s 24(4AD)��������������������������������  11.20 s 25��������������������������������������������  11.9 s 25(2)�������������������������������������  11.33 s 26��������������������������������������������  11.9 s 27������������������������������������������  11.32 s 30������������������������������������������  11.48 s 30(7)�������������������������������������  11.48 s 35, 36������������������������������������  11.29 s 37�����������������������������������   9.4, 11.29 s 37(1)(a)���������������������������������  11.29 s 37(5)�����������������������������������������  9.7 s 38(1)�������������������������������������  11.31 s 38(2)�������������������������������������  11.31 s 39������������������������������������������  11.34 s 40������������������������������������������  11.34 s 41������������������������������������������  11.14 s 41(1)�������������������������������������  11.14 s 41(2)�������������������������������������  11.14 s 41(2)(a), (aa)�������������������������  11.14 s 45(1)���������������������������������������  11.2 s 54��������������������������������������������  11.7 Sch 2����������������������������������������  11.14 para 1ZA(1)�������������������������  11.35 para 1ZA(2), (3)������������������  11.36 para 1ZB(1), (3), (4)������������  11.35 Sch 3�������������������   1.16, 11.14, 11.18, 11.19, 11.22, 11.23, 11.27 para 1(1) ������������������   11.16, 11.22 para 1(2)�������������������   11.22, 11.27 para 1(3)������������������������������  11.16 para 2�����������������������������������  11.16 para 3�����������������������������������  11.17 para 4������������������������   11.18, 11.25 para 4A���������������������   11.18, 11.25 para 5, 6�������������������������������  11.17 para 8�����������������������������������  11.17 Sch 3ZA����������������������������������  11.17 Human Fertilisation and Embryology Act 2008��������������  11.1, 11.2, 11.4, 11.25, 11.29, 11.46, 11.51 Pt 1 (ss 1–32)����������������������������  11.4 s 26��������������������������������������������  11.2 Pt 2 (ss 33–58)��������������������������  11.4 s 37������������������������������������������  11.30 Pt 3 (ss 59–69)��������������������������  11.4 s 54���������������������  11.47, 11.48, 11.49 s 54(1)(a), (b)��������������������������  11.46 s 54(2)�������������������������������������  11.47

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Table of Statutes Human Fertilisation and Embryology Act 2008 – contd s 54(3)��������������������������   11.47, 11.50 s 54(4)�������������������������������������  11.47 s 54(4)(a)���������������������������������  11.51 s 54(5)�������������������������������������  11.47 s 54(6)��������������������������   11.47, 11.52 s 54(7)�������������������������������������  11.47 s 54(8)��������������������������   11.47, 11.48 s 54(10)�����������������������������������  11.46 s 54A����������������������������   11.47, 11.48 s 54A(2)–(8)����������������������������  11.46 Human Organ Transplant Act 1989������������������������������  18.40 Human Rights Act 1998������   1.24, 2.40, 4.1, 4.12, 4.17, 5.57, 5.72, 8.27, 9.22, 10.1, 10.13, 14.2, 14.32, 15.5, 15.17 s 3��������������������������������������������  11.50 s 4����������������������������������������������  16.5 s 6��������������������������   5.63, 5.67, 10.17 s 6(1)�����������������������������������������  7.20 s 7����������������������������������������������  8.25 s 8����������������������������������������������  2.40 s 12(2)���������������������������������������  6.40 Sch 1����������������������������������������  10.17 Human Tissue Act 1961��������������  18.40 Human Tissue Act 2004����   3.26, 18.29, 18.40, 19.1, 19.2, 19.3, 19.15, 19.17, 19.21 s 1�����������������������������������   19.6, 19.18 s 1(1)�����������������������������������������  19.5 s 1(1)(d), (f)�����������������������������  19.11 s 1(2), (3)�����������������������������������  19.5 s 2��������������������������������������������  19.12 s 2(2), (3)���������������������������������  19.15 s 2(7)���������������������������������������  19.19 s 3���������������������������������   19.12, 19.20 s 3(3), (4)���������������������������������  19.20 s 3(6)����������������������������   19.19, 19.20 s 3(7), (8)���������������������������������  19.20 s 4���������������������������������   19.12, 19.20 s 5(1)�����������������������������������������  19.5 s 32������������������������������������������  19.11 s 33�����������������������������������   19.4, 19.8 s 34��������������������������������������������  19.4 s 43������������������������������������������  19.21 s 53������������������������������������������  18.40 s 53(1)���������������������������������������  11.1 s 54(1)�������������������������������������  19.15 s 54(9)��������������������������   19.12, 19.19 Sch 1������������������������������������������  19.5 para 7�����������������������������������  19.11 Sch 4 para 2�����������������������������������  19.19

Human Tissue (Authorisation) (Scotland) Act 2019��������������  19.1 Human Tissue (Scotland) Act 2006��������������������������������  19.1 Human Transplantation (Wales) Act 2013��������������������������������  19.3 s 4, 5������������������������������������������  19.1 I Immigration Act 2014 s 39��������������������������������������������  8.10 Infant Life (Preservation) Act 1929�������������������   9.3, 9.4, 9.5, 9.8, 12.2 s 1(1), (2)�������������������������������������  9.3 M Marriage (Same Sex Couples) Act 2013������������������������������  11.41 Matrimonial and Family Proceedings Act 1984 s 32�����������������������������������   6.65, 6.88 Medical Act 1983������������   5.3, 9.9, 9.22 s 2��������������������������������������������  12.12 s 3����������������������������������������������  9.27 Mental Capacity Act 2005����   1.1, 1.20, 2.1, 2.2, 2.3, 2.4, 2.10, 2.14, 3.29, 3.43, 3.45, 4.8, 4.16, 5.2, 5.3, 5.4, 5.12, 5.22, 5.23, 5.57, 5.58, 5.65, 5.85, 5.91, 5.93, 5.94, 5.96, 5.97, 5.103, 5.120, 6.18, 8.24, 9.22, 9.28, 11.22, 12.1, 13.1, 13.4, 13.7, 13.12, 13.14, 13.17, 13.23, 13.25, 13.30, 15.3, 17.12, 17.14 s 1���������������������������   2.16, 2.17, 3.19, 2.37, 2.43, 3.1, 3.9, 3.12, 4.1, 4.4, 4.8, 4.16, 12.26, 14.5, 18.20 s 1(2)�����������������   2.5, 2.17, 3.25, 4.4, 6.11, 17.35 s 1(3)�������������   2.11, 2.17, 2.22, 2.43, 10.7, 10.13 s 1(4)�������������������������   2.16, 2.21, 5.3 s 1(5)���   3.13, 5.13, 6.38, 10.8, 12.15 s 1(6)������������   2.22, 3.34, 10.8, 10.15 s 2�������������   2.6, 2.16, 2.17, 4.4, 9.23, 9.30, 9.31, 10.7, 12.26 s 2(1)�������������������   2.6, 2.7, 2.8, 2.17, 2.29, 4.13, 6.11, 6.17 s 2(2)���������������������������   2.6, 2.7, 2.22 s 2(3)������������������������������������   2.6, 2.7 s 2(4)������������������������������������   2.6, 2.7 s 2(5)����������������   2.1, 4.4, 6.14, 13.14 s 2(6)�������������������������������������������  4.4

xxix

Table of Statutes Mental Capacity Act 2005 – contd s 3����������������������   2.6, 2.7, 2.16, 2.17, 4.4, 5.10, 9.23, 10.7, 12.26, 13.23, 14.5 s 3(1)��������������������������   2.6, 2.7, 2.17, 4.13, 6.11 s 3(1)(a), (b)������������������������������  10.7 s 3(1)(c)����������������������������   2.14, 10.7 s 3(2)����������������������������������   2.6, 2.11 s 3(3)����������������������������������   2.6, 2.12 s 3(4)���������������������������   2.6, 2.9, 10.7 s 4����������������   3.13, 3.16, 10.8, 12.24, 12.26, 13.31, 14.15, 15.6, 15.29, 15.32, 15.45, 15.52, 15.56 s 4(2)������������   3.13, 3.21, 10.7, 15.32 s 4(3)�����������������������������������������  10.7 s 4(4)������������   3.13, 6.28, 10.8, 12.21 s 4(6)�������������   3.13, 3.21, 9.26, 10.8, 14.11, 15.6, 15.32, 15.33, 15.54 s 4(6)(a)�������������������   2.32, 2.40, 4.23 s 4(7)����������������������   3.13, 3.23, 5.65, 6.9, 12.17, 14.11, 15.33, 18.19 s 4(7)(b)�����������������   7.21, 9.26, 15.53 s 4A�������������������   5.3, 5.7, 5.79, 5.80, 5.83, 10.20, 13.14 s 4A(1)�����������������������������   5.14, 5.81 s 4A(3)������������������   5.28, 6.17, 12.22 s 4A(4)������������������   5.28, 6.17, 12.22 s 4A(5)���������������������������   5.28, 12.22 s 4B�������������������   5.3, 5.7, 5.14, 5.28, 5.65, 5.66, 5.81, 5.82, 5.83, 5.106, 10.20, 10.22, 12.22 s 4B(9)�������������������������������������  5.106 s 5��������������������   1.33, 1.34, 1.36, 2.4, 2.18, 3.2, 3.10, 3.11, 3.23, 3.32, 5.7, 5.11, 5.14, 5.82, 5.92, 5.99, 6.2, 6.5, 6.6, 6.8, 9.28, 10.20, 12.18, 13.22, 13.29, 14.9, 15.55, 17.35 s 5(1)���������������������������������������  14.13 s 5(3), (4), (6)����������������������������  3.10 s 6����������������� 3.11, 5.4, 5.7, 5.11, 5.14, 5.63, 5.92, 5.99, 6.2, 6.5, 6.6, 9.28, 10.20, 13.29 s 6(2)�����������������������������������������  5.11 s 6(3)�����������������������������������������  5.11 s 6(4)������������������������������������   5.7, 5.8 s 6(7)���������������������������������������  5.119 s 8����������������������������������������������  4.13 s 9(1)(a)���������������������������������������  3.9 s 9(2)(c)������������������������������   4.4, 6.17 s 11��������������������������������������������  5.11

Mental Capacity Act 2005 – contd s 15���������������������� 2.21, 2.23, 5.79, 6.7, 6.39, 6.59, 9.33, 12.22, 15.59 s 15(1)����������������������������   6.14, 12.22 s 15(1)(a)��������������������������   6.25, 6.59 s 15(1)(c)�����������   2.23, 3.8, 3.33, 5.3, 6.9, 6.25, 6.59, 12.22 s 16������������������   1.1, 2.23, 3.32, 5.79, 6.14, 6.17, 6.39, 6.59, 9.33, 11.22, 13.14, 15.57, 15.59 s 16(1)����������������������������   2.23, 12.22 s 16(2)����������   3.33, 5.11, 5.92, 12.22 s 16(2)(a)�����������   5.3, 5.7, 5.14, 5.28, 5.62, 5.81, 6.17, 6.25, 6.39, 6.59, 11.27, 12.18, 12.22 s 16(2)(b)����������������������������   3.9, 5.81 s 16(5)������������������������������   5.11, 5.92 s 16(8)�����������������������������������������  6.9 s 16A������������������������������   13.9, 13.30 s 16A(1)����������������   5.93, 6.15, 13.23 s 17�����������������������������������   1.1, 15.59 s 18(2)��������������������������������   4.4, 6.17 s 18(3)�����������������������   4.4, 6.14, 6.17 s 20��������������������������������������������  5.11 s 21A�������������   6.38, 6.39, 6.47, 6.50, 15.57, 15.59 s 21ZA�������������������������������������  5.112 s 23(2)(b)�������������������������������������  6.9 s 24����������������   1.36, 2.33, 2.36, 3.31, 6.9, 10.20, 12.24, 15.58 s 24(1)������������   2.34, 4.4, 6.17, 14.31 s 24(2)–(4)���������������������������������  2.34 s 24(5)����������������������������   2.34, 14.12 s 24(6)�������������������������������������  14.12 s 25����������������   1.36, 2.33, 2.35, 2.38, 3.31, 6.9, 10.20, 12.24, 15.58 s 25(2)�������������������������������������  15.58 s 25(3)���������������������������������������  2.35 s 25(4)�������������������   2.35, 2.39, 15.58 s 25(4)(c)�����������������������������������  2.39 s 25(5)������������������������������   2.35, 2.36 s 25(5)(a)���������������������������������  15.58 s 25(6)�������������������   2.35, 2.36, 15.58 s 26����������������   1.36, 2.33, 2.38, 3.31, 10.20, 12.24, 15.58 s 26(2)���������������������������������������  2.40 s 26(3)����������������������������   2.35, 15.58 s 26(4)���������������������������������������  2.36 s 26(5)����������������������������   2.36, 14.10 s 27������������������������������������������  10.10 s 27(1)(h), (i)���������������������������  11.22 s 27(2)(i)����������������������������������  11.22 s 35��������������������������������������������  6.51 s 37(2)�����������������������������������������  6.9

xxx

Table of Statutes Mental Capacity Act 2005 – contd s 37(3)��������������������������������   3.22, 6.9 s 37(4)�����������������������������������������  6.9 s 37(6)�����������������������������������������  6.5 s 42(4)�����������������������������������������  2.6 s 44������������������������������   2.1, 4.4, 6.17 s 45��������������������������������������������  6.14 s 45(1)���������������������������������������  6.35 s 45(3)������������������������������   6.33, 6.36 s 46��������������������������������������������  6.36 s 46(3)���������������������������������������  6.36 s 46(4)���������������������������������������  6.36 s 47(1)���������������������������������������  6.35 s 48��������������������������   2.18, 2.21, 6.39 s 49��������������������������   2.19, 6.38, 6.58 s 50��������������������������������������������  6.47 s 50(3)���������������������������������������  6.47 s 50(1)���������������������������������������  6.47 s 50(1A)������������������������������������  6.47 s 51��������������������������������������������  6.37 s 52��������������������������������������������  6.37 s 64(5)������������������������������   5.30, 5.57 s 64(6)���������������������������������������  5.57 Sch AA1���������������   5.3, 5.106, 5.107, 5.112, 5.114 para 6, 7�������������������������������  5.109 para 13���������������������������������  5.110 para 16������������������������   5.112, 6.17 para 24(2)����������������������������  5.111 para 26���������������������������������  5.111 para 29���������������������������������  5.113 para 32���������������������������������  5.113 para 38���������������������������������  5.112 para 39���������������������������������  5.111 para 40���������������������������������  5.111 Sch A1���������������   5.3, 5.7, 5.14, 5.15, 5.28, 5.57, 5.65, 5.70, 5.74, 5.80, 5.81, 5.84, 5.86, 5.87, 5.88, 5.107, 6.2, 6.17, 10.22, 12.18, 12.22, 13.14, 13.31 para 12(3)����������������������������  5.102 para 13��������������������������   4.4, 13.14 para 50���������������������������������  13.14 Sch 1A�������������   5.3, 5.28, 5.88, 5.90, 5.94, 5.98, 5.100, 5.107, 6.13, 6.15, 12.18, 13.9, 13.23, 13.30 para 2����������������������������   5.94, 5.96 para 5�������������������   5.94, 5.95, 5.96 Sch 3������������������������������������������  6.47 Mental Capacity (Amendment) Act 2019���������������   5.3, 5.30, 5.54, 5.105, 13.12 s 1(4)�������������������������������������������  5.3 s 2��������������������������������������������  5.106 s 3��������������������������������������������  5.112

Mental Capacity (Amendment) Act 2019 – contd Sch 1����������������������������������������  5.107 Sch 2 para 2���������������������������������������  5.3 Mental Health Act 1983����������   2.2, 3.3, 3.5, 5.5, 5.25, 5.60, 5.65, 5.82, 5.93, 5.94, 5.97, 5.99, 5.120, 7.13, 13.1, 13.7, 13.8, 13.10, 13.22, 13.23, 17.14, 17.47 Pt II (ss 2–34)�������������������   9.10, 13.9 s 2���������������������������   5.27, 5.95, 5.98, 5.99, 5.102, 5.103 s 2(2)(a)�����������������������������������  5.102 s 3������������������   5.27, 5.95, 5.98, 5.99, 5.102, 5.103, 7.17, 12.15, 12.16, 13.25, 13.30, 17.26, 17.37, 17.38, 17.40, 17.41 s 3(2)���������������������������������������  5.103 s 4����������������������������������������������  5.95 s 11(5)���������������������������������������  9.10 s 13�������������������������������   13.30, 13.31 s 17������������������������������������   5.6, 5.95, 5.104, 12.16 s 17(3)�����������������������������������������  5.6 s 33(1)���������������������������������������  4.43 s 37��������������������������������������������  7.17 s 45A�����������������������������������������  7.17 s 47��������������������������������������������  7.17 s 48����������������������   7.17, 13.19, 17.43 Pt IV (ss 56–64)��������������������������  6.9 s 57, 58��������������   13.17, 13.21, 17.37 s 58A����������������������������   13.17, 13.21 s 63���������������   2.37, 3.4, 3.6, 3.7, 3.8, 3.44, 5.5, 5.93, 5.104, 6.13, 6.15, 12.18, 13.17, 13.18, 13.19, 13.20, 13.21, 13.23, 13.29, 13.30, 13.31, 14.3, 17.22, 17.37, 17.38, 17.39, 17.40, 17.41, 17.42, 17.43, 17.44, 17.45, 17.46, 17.47 Pt IVA (ss 64A–64K)������������������  6.9 s 117�������������������������������������   8.8, 8.9 s 118������������������������������������������  4.44 s 131������������������������   5.24, 5.99, 13.9 s 131(2), (3)�������������������������������  4.43 s 131(4)���������������������   4.1, 4.43, 13.9 s 131(5)�������������������������������������  4.43 s 135�������������������������������   3.11, 17.35 s 145���������������������   3.7, 13.17, 13.23, 13.30, 17.46 s 145(1)�������������   13.17, 17.39, 17.41 s 145(4)�����������   3.4, 3.8, 5.96, 13.17, 13.19, 13.21, 14.3, 17.41, 17.43

xxxi

Table of Statutes Mental Health Act 2007��������   2.1, 2.37, 3.1, 13.17, 13.21, 17.41 Sch A1�����������������������������������������  2.1 N National Health Service Act 1977���  1.7 s 1(1)�������������������������������������������  7.8 National Health Service Act 2006���������������   7.8, 7.17, 7.36, 8.3, 8.5, 8.6, 8.10, 8.19, 8.29 s 1��������������������������������   7.8, 8.6, 8.12 s 1(1)���������������������������   7.8, 8.5, 8.10 s 1(4)�����������������������������������������  8.11 s 1A���������������������������������������������  8.5 s 1B������������������������������������   8.5, 8.16 s 1C������������������   7.36, 8.5, 8.13, 8.29 s 1H�������������������������������������������  8.22 s 1H(3)����������������������������������������  8.6 s 2������������������������������������������������  8.5 s 2B�������������������������������������������  8.22 s 3���������������������������������������   7.19, 8.7 s 3(1)��������������������   7.8, 7.28, 8.6, 8.8 s 3(1A), (1B)�������������������������������  8.8 s 3B���������������������������������������������  8.6 s 4������������������������������������������������  8.6 s 9������������������������������������������������  8.6 s 13A�������������������������������������������  8.3 s 13C����������������������������������   7.8, 8.16 s 13G��������������������������������   7.36, 8.29 s 14P�����������������������������������   7.8, 8.16 s 14T���������������������������������   7.36, 8.29 s 14Z7�����������������������������������   8.8, 8.9 s 14Z8������������������������������������������  8.8 s 175������������������������������������������  8.12 s 175(1)�������������������������������������  8.11 s 223H(1)����������������������������������  8.26 National Health Service (Wales) Act 2006�����   8.5, 8.7, 8.10 s 1(1)�����������������������������������������  8.10 s 3(1)�������������������������������������������  8.7 O Offences against the Person Act 1861�����������   9.2, 9.4, 9.8, 9.18 s 58��������������������������   9.2, 9.18, 12.10 s 59��������������������������������������������  9.18 Organ Donation (Deemed Consent) Act 2019���������������������   19.1, 19.20

P Police and Criminal Evidence Act 1984 s 17���������������������������������   3.11, 17.35 Prisoners (Temporary Discharge for Ill-health) Act 1913������������������������������  13.16 Public Health (Control of Disease) Act 1984 s 46������������������������������������������  18.38 S Senior Courts Act 1981 s 16��������������������������������������������  6.87 s 19����������������������������������������������  3.1 s 19(2)(b)�������������������������������������  3.1 s 90(1)���������������������������������������  6.29 s 116�����������������������������   18.37, 18.38 Sch 1������������������������������������������  6.88 para 3(b)(ii)������������������   6.63, 6.65 Suicide Act 1961������   13.16, 16.4, 16.5, 16.11, 17.6 s 1����������������������������������������������  17.6 s 2���������������������������   16.5, 16.6, 16.7, 16.9, 16.11, 16.19, 17.6, 17.8 s 2(1)�����������������������������������������  16.9 s 2(4)��������������������������������   16.7, 17.6 Sexual Offences Act 2003 s 30–33������������������������������������  10.10 Surrogacy Arrangements Act 1985��������������  11.1, 11.4, 11.7, 11.41, 11.48 s 1(2A)��������������������������������������  11.7 s 2(1)�����������������������������������������  11.7 s 2(2)�����������������������������������������  11.7 s 2(2A), (2B)��������������������   11.1, 11.7 s 2(5A)�����������������������������   11.1, 11.7 s 2(8A), (8B)�����������������������������  11.1 s 3����������������������������������������������  11.7 s 4����������������������������������������������  11.7 T Theft Act 1968����������������������������  18.28 s 4��������������������������������������������  18.32 U Unfair Contract Terms Act 1977 s 2(1)���������������������������������������  14.12

xxxii

Table of Statutory Instruments [References are to paragraph numbers]

A Abortion (Amendment) (England) Regulations 2002, SI 2002/887 reg 3(1)(a)(ii)����������������������������  9.10 reg 3(1)(d)���������������������������������  9.10 Abortion (Northern Ireland) (No 2) Regulations 2020, SI 2020/503�����������������������������  9.4 Abortion Regulations 1991, SI 1991/499 reg 3(1)(a)(ii)����������������������������  9.10 reg 4(1)��������������������������������������  9.10 Sch 1������������������������������������������  9.10 Sch 2������������������������������������������  9.10 C Care and Support (Direct Payments) Regulations 2014, SI 2014/2871�������������������������  7.17 Civil Procedure Rules 1998, SI 1998/3132����������������   6.37, 6.38 Pt 1 �������������������������������������������  5.84 r 1.6���������������������������������������  6.58 Pt 2��������������������������������������������  5.84 r 2.1(2)��������������������������   6.65, 6.88 Pt 8 ����������������������������������   5.84, 6.88 r 8.1(2)(a)������������������������������  6.88 Pt 39 ��������������������������������   5.84, 6.88 r 39.2�������������������������������������  6.88 Pt 44 �����������������������������������������  6.86 r 44.2(2)���������������������������������  6.86 Pt 45 r 45.8�������������������������������������  6.86 Pt 46������������������������������������������  6.86 Pt 47 �����������������������������������������  6.86 Court of Protection Rules 2007, SI 2007/1744�������������������������  5.84 Pt 3 r 3(2)����������������������������������������  6.101 Pt 9 PD 9E��������������������������������������  6.5

Court of Protection Rules 2017, SI 2017/1035����������������   5.84, 6.37 Pt 1 r 1.1���������������������������������������  6.48 r 1.1(1)�����������������������������������  6.38 r 1.1(3)�����������������������������������  6.38 r 1.1(3)(b)������������������������������  6.38 r 1.2���������������������   6.26, 6.46, 6.58 r 1.2(2)�����������������������������������  6.27 r 1.2(2)(b), (c)�����������������������  6.46 r 1.3���������������������������������������  6.38 r 1.4���������������������������������������  6.38 PD 1A������������������������������������  6.46 para 3��������������������������������  6.46 para 7��������������������������������  6.46 para 11������������������������������  6.46 para 12������������������������������  6.46 Pt 2 r 2.1���������������������������������������  6.46 r 2.5���������������������   6.37, 6.38, 6.58 PD 2A������������������������������������  6.36 Pt 3 r 3.1���������������������������������������  6.38 r 3.1(2)(d)������������������������������  6.41 r 3.1(2)(f)�������������������������������  6.48 r 3.2���������������������������������������  6.38 r 3.3���������������������������������������  6.38 r 3.4(2)�����������������������������������  6.38 r 3.5���������������������������������������  6.38 r 3.5(a)�����������������������������������  6.38 r 3.6���������������������������������������  6.38 PD 3A������������������������������������  6.43 para 2(a)�������������������   6.36, 6.49 para 3�����������������������   6.36, 6.49 PD 3B������������������������������������  6.43 para 2.4(1)(a)��������������������  6.49 Pt 4 r 4.1���������������������������������������  6.31 r 4.2������������������������������   6.31, 6.41 r 4.3���������������������������������������  6.41 r 4.3(1)(a)–(c)������������������������  6.41

xxxiii

Table of Statutory Instruments Court of Protection Rules 2017, SI 2017/1035 – contd r 4.3(2)�����������������������������������  6.41 PD 4A para 1������������������������������  15.60 para 27������������������������������  6.41 para 28������������������������������  6.41 PD 4B������������������������������������  6.31 para 4.1–6.2����������������������  6.31 PD 4C������������������������������������  6.41 para 2.5�����������������������������  6.41 Pt 5 r 5.2���������������������������������������  6.38 Pt 7��������������������������������������������  6.47 r 7.11�������������������������������������  6.48 Pt 8���������������������������������   6.47, 13.30 r 8.1���������������������������������������  6.47 r 8.2���������������������������������������  6.47 r 8.2(e), (f)�����������������������������  6.47 r 8.3���������������������������������������  6.47 r 8.4���������������������������������������  6.47 r 8.5���������������������������������������  6.47 r 8.6���������������������������������������  6.47 PD 8A������������������������������������  6.41 Pt 9 r 9.1(2)�����������������������������������  6.50 r 9.3���������������������������������������  6.50 r 9.4���������������������������������������  6.51 r 9.6���������������������������������������  6.51 r 9.9������������������������������   6.48, 6.51 r 9.10�������������������������������������  6.48 r 9.13(1)(b)�������������������   6.48, 6.51 r 9.13(4)������������������������   6.27, 6.48 PD 9A���������������������������   6.41, 6.50 para 9��������������������������������  6.48 para 14������������������������������  6.50 PD 9B���������������������������   6.41, 6.48 para 5��������������������������������  6.48 PD 9E�����������������������   12.17, 15.56 Pt 10 r 10.10(1)�������������������������������  6.39 PD 10A����������������������������������  6.50 para 6��������������������������������  6.55 PD 10B�������������������������   6.21, 6.52 para 5��������������������������������  6.81 para 7, 8����������������������������  6.53 para 9, 11, 12��������������������  6.54 Pt 11 PD 11A����������������������������������  5.87 Pt 12 PD 12E����������������������������������  6.81 para 1.2�����������������������������  6.81 para 4.2�����������������������������  6.81 Pt 14����������������������   6.58, 6.59, 10.20 r 14.3(2)���������������������������������  6.38 r 14.24��������������������������   2.19, 6.58

Court of Protection Rules 2017, SI 2017/1035 – contd r 14.25��������������������������   2.19, 6.58 PD 14A�������������������������   6.58, 6.59 PD 14B����������������������������������  6.58 PD 14D����������������������������������  6.58 PD 14E����������������������������������  6.58 para 1��������������������������������  2.19 Pt 15�������������������������������   6.58, 10.20 r 15����������������������������������������  2.19 PD 15A����������������������������������  6.58 Pt 16 r 16.1–16.8����������������������������  6.58 Pt 17������������������������������������������  6.44 r 17.1����������������������������   6.44, 6.45 r 17.1(1)(a), (b)�������������������  16.16 r 17.3(1)(a), (c)����������������������  6.44 r 17.4(2)(b)����������������������������  6.44 r 17.10(2)(b)��������������������������  6.46 PD 17A����������������������������������  6.44 para 1��������������������������������  2.19 Pt 19 r 19.3�������������������������������������  6.60 r 19.5�������������������������������������  6.60 r 19.13�����������������������������������  6.61 r 19.19�����������������������������������  6.61 PD 19A����������������������������������  6.60 PD 19B����������������������������������  6.60 Pt 20������������������������������������������  6.62 r 20.7�������������������������������������  6.62 PD 20A����������������������������������  6.62 Pt 26 r 26����������������������������������������  6.38 F Family Procedure Rules 2010, SI 2010/2955���������������   6.37, 6.38, 6.65, 11.51 Pt 3A�����������������������������������������  6.58 Pt 5��������������������������������������������  6.52 r 5.3���������������������������������������  6.79 PD 5A������������������������������������  6.79 Pt 12������������������������������������������  6.52 PD 12D����������������������������������  6.63 PD 12E����������������������������������  6.52 PD 12I�����������������������������������  6.82 Pt 13����������������������������������������  11.51 Pt 16 r 16.2�����������������������������������  11.51 r 16.6(3)(b)(i), (ii)��������   6.16, 6.76 r 16.4�������������������������������������  6.76 PD 16A����������������������������������  6.76 Pt 27 r 27.10�����������������������������������  6.82 r 27.11�����������������������������������  6.82 r 27.11(3)�������������������������������  6.82

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Table of Statutory Instruments Family Procedure Rules 2010, SI 2010/2955 – contd PD 27A para 4.2��������������������   6.31, 6.76 para 4.3�����������������������������  6.76 para 4.3(a)�������������������������  6.31 para 7.2(f)�������������������������  6.76 Pt 28 r 28.1�������������������������������������  6.86 PD 28A����������������������������������  6.86 Pt 36 PD 36J�����������������������������������  6.82 H Health and Social Care Act 2008 (Regulated Activities) Regulations 2014, SI 2014/2936�������������������������  8.16 Human Fertilisation and Embryology Act 2008 (Remedial) Order 2018 (Draft)���������������������������������  11.48 Human Fertilisation and Embryology (Amendment) (EU Exit) Regulations 2019, SI 2019/482�����������������  11.6, 11.11 Human Fertilisation and Embryology (Amendment) (EU Exit) Regulations 2020, SI 2020/1307���������������  11.6, 11.11 Human Fertilisation and Embryology (Amendment) Regulations 2018, SI 2018/334 reg 5(4)(b)�������������������������������  11.19 Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015, SI 2015/572���������������������������  11.2 Human Fertilisation and Embryology (Parental Orders) Regulations 2018, SI 2018/1412�����������������������  11.48 Human Fertilisation and Embryology (Statutory Storage Period for Embryos and Gametes) (Coronavirus) Regulations 2020, SI 2020/566���������������   11.2, 11.10, 11.23 reg 8����������������������������������������  11.24 Human Fertilisation and Embryology (Statutory Storage Period for Embryos and Gametes) Regulations 2009, SI 2009/1582�����������������������  11.24 reg 3, 3A����������������������������������  11.24

Human Tissue Act 2004 (Persons who Lack Capacity to Consent and Transplants) Regulations 2006, SI 2006/1659�������������������������  3.26 reg 3����������������������������������������  19.12 reg 3(1)������������������������������������  19.14 reg 3(2)(a)�������������������������������  19.14 reg 5����������������������������������������  19.12 Pt 3 (regs 9–14)��������������   19.8, 19.11 reg 9������������������������������������������  19.4 reg 10�����������������������������   19.4, 19.11 reg 11������������������������������   19.8, 19.17 reg 11(8), (9)���������������������������  19.17 reg 12–14��������������������������������  19.17 Human Tissue (Permitted Material: Exceptions) (England) Regulations 2020, SI 2020/521���������������  19.20 Human Tissue (Quality and Safety for Human Application) (Amendment) Regulations 2018, SI 2018/335���������������������������  11.5 Human Tissue (Quality and Safety for Human Application) Regulations 2007, SI 2007/1523���������������  11.5 L Local Authorities (Public Health Functions and Entry to Premises by Local Healthwatch Representatives) Regulations 2013, SI 2013/351�����������������  8.22 Local Health Boards (Directed Functions) (Wales) Regulations 2009, SI 2009/1511 reg 2(2)����������������������������������������  8.9 reg 3��������������������������������������������  8.9 reg 4��������������������������������������������  8.4 Local Health Boards (Establishment and Dissolution) (Wales) Order 2009, SI 2009/788�������������������  8.4 M Mental Capacity Act 2005 (Transfer of Proceedings) Order 2007, SI 2007/1899�������������������������  6.16 Mental Capacity Act 2005 (Transitional and Consequential Provisions) Order 2007, SI 2007/1898 art 3�����������������������������������������  14.12 N National Health Service (Charges to Overseas Visitors) (Amendment) Regulations 2017, SI 2017/756�����������������  8.11

xxxv

Table of Statutory Instruments National Health Service (Charges to Overseas Visitors) Regulations 1989, SI 1989/306�����������������  8.11 National Health Service (Charges to Overseas Visitors) Regulations 2015, SI 2015/238��������   8.11, 8.13 reg 3(1)��������������������������������������  8.11 reg 7(3)��������������������������������������  8.11 reg 18����������������������������������������  8.10 National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012, SI 2012/2996�����������   8.6, 8.8, 8.22 reg 20(1)������������������������������������  8.20 reg 21����������������������������������������  7.17 reg 21(7)������������������������������������  8.20 Pt 7 (regs 33–37)�����������������������  8.18 reg 34�������������������������������   8.18, 8.28 reg 34(2)������������������������������������  8.17 Pt 8 (regs 38–43)��������������   7.13, 7.15 reg 38����������������������������������������  7.13 reg 39����������������������������������������  7.14 reg 39(1)������������������������������������  7.13 reg 39(2)������������������������������������  7.13 reg 39(2)(b)�������������������������������  7.13 reg 39(5)������������������������������������  7.13 reg 39(6)������������������������������������  7.14 reg 40����������������������������������������  7.13 reg 42����������������������������������������  7.13 Pt 9 (regs 44–55)�������������������������  8.6 reg 45������������������������������������������  8.6 reg 48(1)������������������������������������  7.15 reg 49����������������������������������������  7.15 Sch 1 para 2(b)����������������������������������  8.8 para 3���������������������������������������  8.8 National Health Service (Direct Payments) Regulations 2013, SI 2013/1617 reg 3(1), (2)�������������������������������  7.17 reg 4������������������������������������������  7.17 reg 5������������������������������������������  7.17 Schedule������������������������������������  7.17

National Health Service (General Medical Services Contracts) Regulations 2015, SI 2015/1862�������������������������  7.10 reg 17����������������������������������������  7.12 reg 22(1)������������������������������������  7.11 Sch 3 para 18(1)������������������������������  7.10 para 21(1)������������������������������  7.10 para 23�����������������������������������  7.10 para 24�����������������������������������  7.10 para 24(3)������������������������������  7.10 National Institute for Health and Care Excellence (Constitution and Functions) and the Health and Social Care Information Centre (Functions) Regulations 2013, SI 2013/259 reg 2, 5��������������������������������������  8.17 reg 7(6)��������������������������������������  8.17 reg 8(6)��������������������������������������  8.17 Non-Contentious Probate Rules 1987, SI 1987/2024 r 22������������������������������������������  18.37 Notification of Deaths Regulations 2019, SI 2019/1112�������������  18.18 P Prescription Only Medicines Act (Human Use) Amendment (No 3) Order 2000, SI 2000/3231�������������������������  9.18 S Special Education Needs and Disability (First-tier Tribunal Recommendation Power) (Pilot) (Amendment) Regulations 2016, SI 2016/2���������������������  8.36 Special Education Needs and Disability (First-tier Tribunal Recommendation Power) (Pilot) Regulations 2015, SI 2015/358���������������������������  8.36

xxxvi

Table of Cases [References are to paragraph numbers]

A A (a child) (medical treatment: removal of artificial ventilation), Re [2015] EWHC 443 (Fam), [2016] 1 FLR 241, [2015] Inquest LR 11����������������������������������������������������������������������������   4.35, 15.8, 18.11 A (A Child) (Surrogacy: s.54 Criteria), Re [2020] EWHC 1426 (Fam), [2021] 2 All ER 204, [2020] 6 WLUK 312������������������������������������  11.50 A (A Child) (Withdrawal of Medical Treatment), Re [2016] EWCA Civ 759, [2016] 7 WLUK 303, [2016] Med LR 427�����������������������  4.22 A (a child), Re [2014] EWHC 920 (Fam), [2015] 1 FLR 503, (2014) 139 BMLR 165����������������������������������������������������������������������������������   4.37, 13.15 A (Abduction: Child’s Objections to Return), Re [2014] EWCA Civ 554, [2014] 1 WLR 4326, [2014] 5 WLUK 43����������������������������������������������������  2.23 A (capacity; refusal of contraception), Re [2011] EWHC 1549 (Fam), [2011] Fam 61, [2011] 2 WLR 878���������������������������������������������   5.16, 9.23, 10.7 A (Children) (Conjoined Twins: Medical Treatment) (No 1), Re [2001] Fam 147, [2001] 2 WLR 480, [2000] 4 All ER 961�������  4.1, 4.11, 4.17, 4.24, 4.33, 15.18, 16.18 A (Covid-19 Vaccination), Re [2021] EWCOP 47, [2021] 5 WLUK 600����������������������������������������������������������������������������������������   3.41, 6.28 A (Human Fertilisation & Embryology Act 2008: assisted reproduction: parent), Re; Re Human Fertilisation & Embryology Act 2008; Re A (legal parenthood: written consents) [2015] EWHC 2602, [2016] 1 WLR 1325, [2016] 1 All ER 273����������������������������  11.29, 11.51, 11.54 A (medical treatment: male sterilisation), Re, sub nom A (male sterilisation), Re [2000] 1 FCR 193, 53 BMLR 66, [2000] 02 LS Gaz R 30������������������������������������������������������������������������������������   3.14, 3.15 A (Mental Patient: Sterilisation), Re [1999] 12 WLUK 657, [2000] 1 FLR 549, [2000] 1 FCR 193������������������������������������������   3.14, 3.15, 4.40, 10.9, 10.13, 10.17, 10.18, 19.16 A Clinical Commissioning Group v AF [2020] EWCOP 16, [2020] 3 WLUK 415�����������������������������������������������������������������������������������  15.50 A Clinical Commissioning Group v P [2019] EWCOP 18, [2019] 5 WLUK 452, [2019] COPLR 235��������������������������������������������������   15.13, 15.56 A County Council v AB [2016] EWCOP 41, [2016] 5 WLUK 695, [2016] COPLR 576���������������������������������������������������������������������������������������  6.28 A County Council v K [2005] EWHC 144 (Fam), [2005] 3 WLUK 291, [2005] 1 FLR 851��������������������������������������������������������������������������������������������  4.7 A Healthcare v CC [2020] EWHC 574 (Fam), [2020] 3 WLUK 151, [2020] COPLR 389 ������������������������������������������������   2.37, 3.4, 3.6, 3.8, 5.5, 6.13, 6.15, 13.30, 14.3, 17.43 A Hospital NHS Trust v LP [2019] EWHC 2989 (Fam), [2019] 7 WLUK 839�����������������������������������������������������������������������������������������������  14.21 A Hospital v SW & A PCT [2007] EWHC 425 (Fam), [2007] LS Law Medical 273���������������������������������������������������������������   6.61, 15.10, 15.16

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Table of Cases A LBC v X (Wardship: Parental Responsibility: Deprivation of Liberty) [2019] 12 WLUK 450, [2020] 1 FLR 1280������������������������������������������������  13.12 A Local Authority v A Mother [2021] EWFC B65��������������������������������������   4.31, 4.34 A Metropolitan BC v DB. See Wolverhampton Metropolitan Borough Council v DB (a minor) A PCT v LDV, CC & B Healthcare Group [2013] EWHC 272 (Fam), [2013] 2 WLUK 453�������������������������������������������������������������������������������������  5.96 A Teaching Hospitals NHS Trust v DV (A Child) [2021] EWHC 1037 (Fam), [2021] 4 WLUK 257, (2021) 180 BMLR 169����������������������������������������������������������������   4.23, 6.76, 14.1, 14.21 A v A Health Authority [2002] EWHC 18 (Fam), [2002] Fam 213, [2002] 3 WLR 24 �����������������������������������������������������������������������������������������  6.19 A v C [2016] EWFC 42, [2016] 7 WLUK 222, [2017] 2 FLR 101��������������������  11.51 A v East Kent Hospitals University NHS Foundation Trust [2015] EWHC 1038 (QB), [2015] 3 WLUK 927, [2015] Med LR 262�������������������  1.23 A v Leeds Teaching Hospitals NHS Trust & Cardiff & Vale NHS Trust [2004] EWHC 644 (QB), [2005] QB 506�����������������������������������������  19.21 A v P [2011] EWHC 1738 (Fam), [2012] Fam 188, [2012] 3 WLR 369�����������  11.30 A, Re (1987) 533 A 2d 611 ��������������������������������������������������������������������������������  12.10 A, Re [1992] 1 WLUK 757, [1992] 3 Med LR 303����������������   15.8, 15.9, 18.6, 18.12 A, Re; C, Re [2010] EWHC 978 (Fam), [2010] 5 WLUK 22, [2010] 2 FLR 1363 ���������������������������������������������������������������������������������������  5.57 AA (a child), Re [2014] EWHC 4861 (Fam), [2014] 8 WLUK 133��������������������  4.35 AA (Compulsorily Detained Patient: Elective Caesarean), Re [2012] EWHC 4378 (COP), [2012] 8 WLUK 283, [2014] 2 FLR 237�������������������������������������������������������   12.14, 12.15, 12.19, 12.20 AB (A Child) (Care Proceedings: Medical Treatment), Re [2018] EWFC 3, [2018] 4 WLR 20, [2018] 1 WLUK 131���������������������  4.19 AB (A Child) (Deprivation of Liberty: Consent), Re [2015] EWHC 3125 (Fam), [2016] 1 WLR 1160, [2015] 7 WLUK 866�������������������  4.1 AB (Surrogacy: Consent), Re [2016] EWHC 2643 (Fam), [2016] 10 WLUK 551, [2017] 2 FLR 217��������������������������������������������������������������  11.52 AB (Termination of Pregnancy) [2019] EWCA Civ 1215, [2019] 1 WLR 5597, [2019] 7 WLUK 130�����������������������������������������������������   9.22, 9.25 AB v CD [2021] EWHC 741 (Fam), [2021] 3 WLUK 437, [2021] Med LR 365����������������������������������������������������������   4.14, 4.17, 6.11, 6.12, 6.30, 6.73, 13.15 AB v CD, 2020 BCC A 11 (Court of Appeal for British Columbia)��������������������  4.13 AB, Re [2016] EWCOP 66, [2016] 12 WLUK 489, [2018] COPLR 269���   3.35, 3.36 ABC v St. George’s Healthcare NHS Trust [2017] EWCA Civ 336, [2017] 5 WLUK 360, [2017] PIQR P15�������������������������������������������������������  1.20 ABC v St. George’s Healthcare NHS Trust [2020] EWHC 455 (QB), [2020] 2 WLUK 400, [2020] PIQR P13�������������������������������������������������������  1.20 AC v Manitoba (Director of Child and Family Services) 2009 SCC 30, [2009] 2 SCR 181����������������������������������������������������������������   4.13, 14.32 AEL, Re. See Havering LBC v AEL A-F (Children) (Care Proceedings: Deprivation of Liberty), Re [2018] EWHC 138 (Fam), [2019] Fam 45, [2018] 3 WLR 1905��������������  4.1 AG, Re. See G, Re A-G’s Reference (No 3 of 1994) [1998] AC 245, [1997] 3 All ER 936, [1997] 3 WLR 421�����������������������������������������������������������������������������   12.3, 12.10 A-G’s Reference (No 6 of 1980) [1981] QB 715, [1981] 3 WLR 125, [1981] 2 All ER 1057��������������������������������������������������������������������������������������  1.9 AGK, Re (unreported, 2019)�����������������������������������������������������������������������   4.15, 4.23 AH, Re [2021] EWCA 1768�������������������������������������������������������������������������������  14.19 AH, Re [2021] EWCA Civ 1768, [2021] 11 WLUK 339����������������������������   6.28, 6.59 AK (Adult Patient) (Medical Treatment: Consent), Re [2000] 8 WLUK 112, [2001] 1 FLR 129, [2001] 2 FCR 35�������������������������������������  2.15

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Table of Cases AM (Zimbabwe) v Secretary of State for the Home Department [2020] UKSC 17, [2021] AC 633, [2020] 2 WLR 1152�������������������������������  7.25 AM v South London & Maudsley NHS Foundation Trust [2013] UKUT 365 (AAC), [2014] MHLR 181������������������   5.5, 5.63, 5.99, 5.100, 5.101 AMDC v AG [2020] EWCOP 58, [2020] 4 WLR 166, [2020] 11 WLUK 201�����������������������������������������������������������������������������������������������  2.19 AMDC v AG [2021] EWCOP 5, [2021] 1 WLUK 237����������������������������������������  2.19 AVS v NHS Foundation Trust [2011] EWCA Civ 7, [2011] 2 FLR 1, [2011] Fam Law 363������������������������������������������������������������   2.26, 3.33 Abbas v Kenney [1995] 7 WLUK 357, [1996] 7 Med LR 47, (1996) 31 BMLR 157������������������������������������������������������������������������������������  1.11 Aftanache v Romania [2020] 5 WLUK 614, (2021) 72 EHRR 14��������������   5.60, 5.77 Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, [2014] AC 591, [2013] 3 WLR 1299, [2014] 1 All ER 573������������������������������������������   2.26, 2.36; 3.1, 3.14, 3.17, 3.18, 3.23, 3.29, 3.30, 3.32, 4.22, 4.28, 7.5, 10.8, 15.6, 15.28, 15.33, 15.45, 15.46, 15.75 Airedale NHS Trust v Bland [1993] AC 789, [1993] 2 WLR 316, [1993] 1 All ER 821 ����������������   3.2, 3.30, 4.33, 4.35, 13.16, 13.17, 15.2, 15.3, 15.4, 15.5, 15.6, 15.9, 15.11, 15.12, 15.15, 15.16, 15.21, 15.29, 15.40, 15.47, 15.52, 15.53, 15.57, 15.61, 15.69, 15.76, 15.77, 15.80, 15.86, 16.17, 17.7, 17.9, 17.35, 18.2, 18.8, 18.11, 18.20 Akdoğdu v Turkey No 46747/99, 18 October 2005���������������������������������������������  7.26 Al Hamwi v Johnston & North West London Hospitals NHS Trust [2005] EWHC 206 (QB), [2005] 2 WLUK 499, [2005] Lloyd’s Rep Med. 309�����������������������������������������������������������������������������������  1.14 Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWCA Civ 805, [2018] 4 WLUK 188, [2018] 2 FLR 1269����������������   4.26, 15.1 Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWCA Civ 984, [2018] 4 WLUK 432, [2018] Med LR 309�����������������������  4.26 Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam), [2018] 2 WLUK 416, [2018] 2 FLR 1223�����������������������������������������������������   4.24, 4.25, 4.26, 4.28, 4.34, 4.36, 4.39, 15.1, 15.71, 15.75, 15.83 Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 818 (Fam), [2018] 4 WLUK 93�������������������������������������������������������  4.26 Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 953 (Fam), [2018] 4 WLUK 401, [2018] 2 FLR 1246��������������������  4.26 Alfie Evans, Re. See Alder Hey Children’s NHS Foundation Trust v Evans������������������   An NHS Trust v JP [2019] EWCOP 23, [2019] 6 WLUK 495, [2019] COPLR 298���������������������������������������������������������������������   6.9, 12.9, 12.19 Anderson v Spencer [2018] EWCA Civ 100, [2019] Fam 66, [2018] 3 WLR 972��������������������������������������������������������������������������������������  19.19 Andronicou v Cyprus (25052/94) [1997] 10 WLUK 195, (1998) 25 EHRR 491, 3 BHRC 389�����������������������������������������������������������  17.31 Appleton v Garrett [1996] PIQR P1, [1997] 8 Med LR 75, (1997) 34 BMLR 23��������������������������������������������������������������������������������������  2.40 Associated Provincial Picture Houses Ltd v Wednesbury Corporation [1948] 1 KB 223, [1947] 2 All ER 680, (1947) 63 TLR 623�������������������������  1.7 Association X v United Kingdom (1978) 14 DR 31�������������������������������������������  15.19 Auckland Area HB v AG [1993] 1 NZLR 235����������������������������������������   15.21, 15.22 Austin v United Kingdom (39692/09) [2012] 3 WLUK 484, (2012) 55 EHRR 14, 32 BHRC 618����������������������������������������������������������������   5.42, 5.68

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Table of Cases Avon and Wiltshire Mental Health Partnership v WA [2020] EWCOP 37, [2020] 7 WLUK 271����������   3.21, 5.118, 13.24, 13.27, 14.3 B B (a child) (care proceedings: appeal) [2013] UKSC 33, [2013] 1 WLR 1911, [2013] 3 All ER 929����������������������������������������������������  3.18 B (a child) (medical treatment), Re [2008] EWHC 1996 (Fam), [2009] 1 FLR 1264, [2009] LS Law Medical 214����������   6.21, 6.69 B (a child), Re [2009] EWHC 3269 (Fam), [2009] 11 WLUK 204, [2010] 1 FLR 946, [2010] Fam Law 139������������������������������������������������������  4.37 B (a minor) (wardship: medical treatment), Re [1981] 1 WLR 1421, [1990] 3 All ER 927, [1981] 8 WLUK 30 ����������������������   4.21, 4.34, 4.36, 15.72 B (a minor) (wardship: sterilisation), Re [1988] AC 199, [1987] 2 WLR 1213, [1987] 2 All ER 206�������������������   10.8, 10.9, 10.11, 10.12, 10.13, 10.22 B (Adult: Refusal of Medical Treatment), Re [2002] All ER 449������������������������  4.11 B (child: termination of pregnancy), Re [1991] FCR 889, [1991] 2 FLR 426, [1991] Fam Law 379�����������������������������������������������������������������  9.27 B and G (Minors) (Custody) [1985] FLR 134������������������������������������������������������  14.1 B NHS Trust v J [2006] EWHC 3152 (Fam), (2007) 94 BMLR 15, [2006] All ER (D) 290 (Nov)�������������������������������������������������������������   3.28, 15.13 B v A (Wasted Costs Order) [2012] EWHC 3127 (Fam), [2012] 12 WLUK 223, [2013] 2 FLR 958����������������������������������������������������������������  6.54 B v A Local Authority [2019] EWCA Civ 913, [2020] Fam 105, [2019] 3 WLR 685������������������������������������������������������������������������������������������  2.9 B v A NHS Hospital Trust [2002] EWHC 429 (Fam), [2002] 2 All ER 449, [2002] 3 WLUK 687, [2002] Lloyd’s Rep Med 265���������������������������������������������������������������������   2.2, 2.28, 3.3, 7.4, 7.5 B v Croydon Health Authority [1995] Fam 133, [1995] 2 WLR 294, [1995] 1 All ER 683, (1994) 22 BMLR 13����������������������������������������������������������   3.6, 5.5, 13.16, 13.17, 13.22, 14.3, 17.38, 17.41, 17.44 B v D [2017] EWCOP 15, [2017] 9 WLUK 35, [2017] COPLR 347������������������  3.28 BB v AM [2010] EWHC 1916 (Fam), [2010] 7 WLUK 700�������������������������������  5.98 BJ (incapacitated adult), Re [2009] EWHC 3310 (Fam), [2010] 1 FLR 1373, (2010) 13 CCL Rep 65���������������������������������������������������   5.86, 5.87 Baby Boy Doe, Re (1994) 632 NE 2d 32�����������������������������������������������������������  12.10 Bagguley v E [2019] EWCOP 49, [2020] Fam 267, [2020] 2 WLR 236�����������  19.19 Baker v Cambridgeshire and Peterborough NHS Foundation Trust [2015] EWHC 609 (QB), [2015] 3 WLUK 285��������������������������������  17.17 Bank Mellat v HM Treasury [2013] UKSC 39, [2014] AC 700, [2013] 3 WLR 179����������������������������������������������������������������������������������������  4.17 Barking, Havering and Redbridge University Hospitals NHS Trust v X (A Child) [2020] EWHC 1630 (Fam), [2020] 6 WLUK 656�����������������������������������������������������������������������������������  14.32 Barnet LBC v AL [2017] EWHC 125 (Fam), [2017] 4 WLR 53, [2017] 1 WLUK 594�������������������������������������������������������������������������������������  4.19 Barnsley Hospital NHS Foundation Trust v MSP [2020] EWCOP 26, [2020] 5 WLUK 491����������������������   2.36, 6.25, 14.14, 15.33, 15.59 Barr v Matthews (1999) 52 BMLR 217������������������������������������������������������������������  9.6 Barts NHS Foundation Trust v Raqeeb. See Raqeeb v Barts NHS Foundation Trust Bayley v George Eliot Hospital NHS Trust [2017] EWHC 3398 (QB), [2017] 12 WLUK 670 ������������������������������������������������������������������������  1.10 Bell v Tavistock and Portman NHS Foundation Trust [2020] EWHC 3274 (Admin), [2021] PTSR 593, [2020] 12 WLUK 4����������������������������������������������������������������������������   4.6, 4.7, 4.10, 4.14

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Table of Cases Bell v Tavistock and Portman NHS Foundation Trust [2021] EWCA Civ 1363, [2022] 1 All ER 416, [2022] PTSR 544������������������������  14.31 Bellinger v Bellinger (Lord Chancellor intervening) [2003] UKHL 21, [2003] 2 AC 467, [2003] 2 All ER 593�����������������������������������������  1.9 Birch v University College London Hospital NHS Foundation Trust [2008] EWHC 2237 (QB), [2008] 9 WLUK 479, (2008) 104 BMLR 168�������������������������������������������������������������������������   1.20, 1.27 Birmingham City Council v D (a child) [2016] EWCOP 8, [2016] PTSR 1129, [2016] 1 WLUK 390 �����������������������������������������   5.72, 13.10 Birmingham Women’s and Children’s NHS Foundation Trust v JB [2020] EWHC 2595 (Fam), [2020] 8 WLUK 306, [2021] 1 FLR 1328��������������������������������������������������������������������������������������  15.36 Black v Forsey [1988] SLT 57��������������������������������������������������������������������������������  6.3 Bolam v Friern Barnet Hospital Management Committee [1957] 1 WLR 582, [1957] 2 All ER 118, [1957] 2 WLUK 94�����������   1.20, 3.28, 15.10, 15.11, 15.16, 15.57 Bournewood case see HL v UK Bracking v Secretary of State for Work & Pensions [2013] EWCA Civ 1345, [2014] Eq LR 60, (2013) 16 CCL Rep 479�������������������������   7.36, 8.29 Briggs (Incapacitated Person), Re [2017] EWCA Civ 1169, [2018] Fam 63, [2018] 2 WLR 152���������������������������   15.12, 15.55, 15.57, 15.59 Briggs v Briggs (No 2) [2016] EWCOP 53, [2017] 4 WLR 37, [2016] 12 WLUK 528�������������������������������������������   3.30, 15.6, 15.44, 15.45, 15.46 Brightwater Care Group v Rossiter [2009] WASC 229����������������   13.16, 17.12, 17.16 Briody v St Helens and Knowsley AHA [2001] EWCA Civ 1010, [2002] QB 856, [2002] 2 WLR 394 ������������������������������������������  11.41 Bronda v Italy (Application 22430/93) (1998) 33 EHRR 4, [1998] ECHR 22430/93 [1998] EHRLR 756�������������������������������������������  4.25 Bruggeman & Scheuten v Federal Republic of Germany (1978) 10 DR E Com HR 100���������������������������������������������������������������������  12.10 Buchanan v Milton [1999] 5 WLUK 443, [1999] 2 FLR 844, (2000) 53 B.MLR 176���������������������������������������������������������������������������������  18.37 Buck v Bell, 247 US 200��������������������������������������������������������������������������������������  10.1 Bures v Czech Republic (Application 37679/08) [2013] MHLR 126������������������  5.20 Burke v GMC. See R (on the application of Burke) v General Medical Council & Disability Rights Commission Burrows v HM Coroner for Preston [2008] EWHC 1387 (Admin), [2008] 5 WLUK 332, [2008] 2 FLR 1225 ��������������������������������������   18.28, 18.37 Burton v Islington Health Authority [1993] QB 204, [1992] 3 WLR 637, [1992] 3 All ER 833������������������������������������������������������   12.3, 12.10 C C (a child) (HIV testing), Re [2000] Fam 48, [2000] 2 WLR 270, [1999] 3 FCR 289�����������������������������������������������������������������������������������������  4.25 C (a child) (Parental Order), Re [2013] EWHC 2408 (Fam), [2013] 7 WLUK 665, [2014] 1 FLR 757����������������������������������������������������  11.48 C (a minor) (detention for medical treatment), Re [1997] 3 WLUK 94, [1997] 2 FLR 180, [1997] 3 FCR 49�����������   3.6, 6.11, 13.7, 13.13 C (a minor) (medical treatment), Re [1997] 11 WLUK 311, [1998] 1 FLR 384, [1998] 1 FCR 1�����������������������������������������������������   4.21, 4.24 C (a minor) (Ward: Surrogacy), Re [1985] 1 WLUK 841, [1985] Fam Law 191, (1985) 135 NLJ 106��������������������������������������������������  11.7 C (A Minor) (Wardship: Medical Treatment) (No 1), Re [1990] Fam 26, [1989] 3 WLR 240, [1989] 2 All ER 782����������������������������   4.21, 18.22 C (adult patient: restriction of publicity after death) [1996] 2 FLR 251, [1996] 1 FCR 605, [1996] Fam Law 610�����������������������������������������������������  6.41

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Table of Cases C (adult: refusal of medical treatment), Re [1994] 1 All ER 819, [1994] 1 WLR 290, 15 BMLR 77, [1993] NLJR 1642���������������������   4.11, 17.44 C (baby: withdrawal of medical treatment); Bolton NHS Foundation Trust v C [2015] EWHC 2920 (Fam), [2015] 10 WLUK 465, (2016) 150 BMLR 161�����������������������������������������������������������������������   4.34, 18.23 C (Children) (Child in Care: Choice of Forename), Re [2016] EWCA Civ 374, [2017] Fam 137, [2016] 3 WLR 1557����������������������   4.19, 4.35 C (Looked After Child: Covid-19 Vaccination), Re [2021] EWHC 2993 (Fam), [2021] 11 WLUK 84, [2022] 1 FCR 502��������������������  4.19 C (welfare of child: immunisation), Re sub nom C (a Child) (immunisation: parental rights), Re, F (a child) (immunisation: parental rights), Re [2003] EWCA Civ 1148, [2003] 7 WLUK 897, [2003] 2 FLR 1095�������������������������������������������������������   4.18, 4.24 C v Local Authority [2011] EWHC 1539 (Admin), (2011) 14 CCL Rep 471, [2011] Med LR 415�����������������������������������������������������������������������  10.8 C v S [1988] QB 135, [1987] 2 WLR 1108, [1987] 1 All ER 1230, [1987] 2 FLR 505������������������������   2.24, 4.33, 9.20, 12.2, 12.10, 18.32 CA (Natural Delivery or Caesarean Section), Re [2016] EWCOP 51, [2016] 12 WLUK 203, (2017) 154 BMLR 142�����������������������  12.9 CB v Medway Council [2019] EWCOP 5, [2019] 3 WLUK 72, [2019] COPLR 180���������������������������������������������������������������������������������������  6.38 CC v KK & STCC [2012] EWHC 2136 (COP), [2012] 7 WLUK 861����������������  2.14 CH v A Metropolitan Council [2017] EWCOP 12, [2017] 7 WLUK 730, [2017] COPLR 341����������������������������������������������������   2.11, 10.13 CK (A Child), Re [2020] EWHC 3476 (Fam), [2020] 12 WLUK 460�����   4.16, 13.15 CM v EJ’s exor (dec’d) [2013] EWHC 1680 (Fam), [2013] 2 FLR 1410, [2013] Med LR 321���������������������������������������������������������������  19.19 CR, Re. See NHS Tameside & Glossop CCG v CR CS (termination of pregnancy), Re [2016] EWCOP 10, [2016] 1 WLUK 424, [2017] 1 FLR 635���������������������������������������   9.23, 9.24, 9.26, 9.28 Cambra v Jones [2014] EWHC 913 (Fam), [2015] 1 FLR 263, [2014] Fam Law 959�������������������������������������������������������������������������������������  4.12 Cambridge University Hospitals NHS Foundation Trust v AH [2021] EWCOP 51, [2021] 9 WLUK 55, [2021] COPLR 519����������   4.40, 14.20 Cambridge University Hospitals NHS Foundation Trust v BF [2016] EWCOP 26, [2016] 5 WLUK 405, [2016] COPLR 411�������������������  10.9 Cambridge University Hospitals NHS Foundation Trust v GW [2021] EWHC 2105 (Fam), [2021] 7 WLUK 534���������������������   3.11, 4.10, 4.23, 5.119, 6.16, 13.15 Carter v Canada (A-G) 2015 SCC 5, [2015] 1 SCR 331�����������������������������   4.13, 16.9 Charles Gard, Re [2017] EWCA Civ 410������������������������   4.20, 4.24, 4.25, 4.26, 4.32, 7.5, 15.1, 15.71, 15.73, 15.83 Chatterton v Gerson [1981] QB 432, [1980] 3 WLR 1003, [1981] 1 All ER 257 ������������������������������������������������������������   1.4, 1.10, 1.19, 1.31 Cheshire and Wirral Partnership NHS Foundation Trust v Z [2016] EWCOP 56, [2016] 12 WLUK 684, [2017] COPLR 165����������������   13.26, 13.30 Cheshire Centre for Independent Living v HMRC [2019] UKFTT 354, [2019] 6 WLUK 31���������������������������������������������������������������  17.18 Cheshire West and Chester Council v P (Costs) [2011] EWCA Civ 1333, [2011] 11 WLUK 507, [2012] 1 Costs LR 150����������������������������  5.39 Cheshire West and Chester Council v P [2011] EWCA Civ 1257, [2012] PTSR 1447, [2011] 11 WLUK 245������������������������������������������   5.39, 5.40 Chester v Afshar [2004] UKHL 41, [2005] 1 AC 134, [2004] 3 WLR 927����������������������������������������������������������������������������������������������������  1.20 Chesterfield Royal Hospital NHS Foundation Trust v TS [2021] EWCOP 41, [2021] 6 WLUK 284����������������������������������������������������������������  6.58 Ciarlariello v Schacter [1993] 2 SCR 199������������������������������������������������������������  2.31

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Table of Cases Clark v Hurst [1992] (4) SA 630�������������������������������������������������������������������������  15.21 Clift v Schwabe, 136 ER 175, (1846) 3 CB 437, [1846] 6 WLUK 95�����������������  17.2 Commissioner for the Police of the Metropolis v ZH [2012] EWHC 604 (QB), [2012] 3 WLUK 434, [2012] Eq LR 425�����������������   5.15, 6.3 Commissioner for the Police of the Metropolis v ZH [2013] EWCA Civ 69, [2013] 1 WLR 3021, [2013] 3 All ER 113��������   3.11, 5.60, 5.64 Connolly v Croydon Health Services NHS Trust [2015] EWHC 1339 (QB), [2015] 5 WLUK 403����������������������������������������������   1.4, 1.11 Conroy, Re (1985) 486A.2d 1209�����������������������������������������������������������������������  15.77 Corr v IBC Vehicles Ltd [2008] UKHL 13, [2008] 1 AC 884, [2008] 2 WLR 499��������������������������������������������������������������������������������������  17.20 Cossey v United Kingdom (10843/84) (1990) 13 EHRR 622, [1990] 9 WLUK 103, [1991] 2 FLR 492, [1993] 2 FCR 97���������������������������  1.9 Costello-Roberts v United Kingdom (Application 13134/87) [1993] 3 WLUK 388, [1994] 1 FCR 65, (1995) 19 EHRR 112�������������������������������  4.12 County Council, a v MB, JB & a Residential Home [2010] EWHC 2508 (COP)��������������������������������������������������������������������������������������  5.83 Crouse Irving Memorial Hospital v Paddock 485 NYS 2d 443 (1985)��������������  12.10 Cumbria NHS Clinical Commissioning Group v S [2016] EWCOP 32, [2016] 5 WLUK 357, (2017) 153 BMLR 168����������������������������������������������������������������������������   15.16, 15.42, 15.53 Curran v Bosze (1990) 566 NE 2d 1319�������������������������������������������������������������  19.16 Cwm Taf University Health Board v F [2015] EWHC 2533 (Fam), [2015] 5 WLUK 395���������������������������������������������������   15.7, 15.61, 15.65 D D (a child) (deprivation of liberty: parental responsibility); Trust A v X (a child) [2015] EWHC 922 (Fam), [2016] 1 FLR 142, [2015] 3 FCR 60�����������������������   4.1, 5.50, 5.71, 13.10, 13.11, 13.12 D (A Child), Re [2019] UKSC 42, [2019] 1 WLR 5403, [2020] 2 All ER 399�����������������������������������������������������   4.1, 4.4, 4.13, 5.50, 5.71, 5.72, 5.76, 6.17, 13.14 D (a minor) (wardship: sterilisation) [1976] Fam 185, [1976] 2 WLR 279, [1976] 1 All ER 326�����������������������   4.17, 4.21, 10.9, 10.10, 10.11, 10.12, 10.22 D (adult: medical treatment), Re [1988] 1 FCR 498, [1998] 1 FLR 411, (unreported, 9 November 2000)����������������������������������������������  15.62 D (medical treatment: mentally disabled patient), Re [1997] 11 WLUK 451, [1998] 2 FLR 22, [1998] 2 FCR 178�����������������������������������  5.17 D (Practice: Declaration of Parentage), Re [2017] EWHC 1782 (Fam), [2017] 4 WLR 128, [2017] 7 WLUK 250 ��������������������������������������  11.51 D v United Kingdom (Application No 30240/96) [1997] 5 WLUK 64, (1997) 24 EHRR 423, 2 BHRC 273��������������������������������������������������   7.23, 15.21 D, Re (2010) EWHC 2535 (COP)������������������������������������������������������������������������  5.14 D, Re (9 November 2000, unreported)����������������������������������������������������   15.62, 15.69 DA v DJ [2017] EWCOP 3904, [2017] 11 WLUK 901, [2020] COPLR 454������������������������������������������������������������������������������   2.21, 6.39 DD, Re [2014] EWCOP 11, [2015] 1 FLR 1430, (2014) 140 BMLR 118�������������������������������������������������������������������������������������������  12.14 DN v Northumberland Tyne & Wear NHS Foundation Trust [2011] UKUT 327 (AAC), [2011] MHLR 249�������������������������������������������  5.102 DP v Hillingdon LBC [2020] EWCOP 45, [2020] 9 WLUK 328, [2020] COPLR 769������������������������������������������������������������������������������   2.21, 6.39 DP, Re [2014] EWHC 7 (COP), [2014] 6 WLUK 725�����������������������������������������  4.41 DPP v Kebeline [1993] 3 WLR 972���������������������������������������������������������������������  16.5 DS v JS & An NHS Trust, [2002] EWHC 2734 (Fam), [2003] 1 FLR 879���������  3.28

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Table of Cases Davis (Deceased), Re [1968] 1 QB 72, [1967] 2 WLR 1089, [1967] 1 All ER 688��������������������������������������������������������������������������������������  17.2 De L v H 2009] EWHC 3074 (Fam), [2009] 12 WLUK 107, [2010] 1 FLR 1229����������������������������������������������������������������������������������������  4.12 Decision of Verieraltungsgericht Bremmen of 9 November 1959: Fawcett No 1287/61������������������������������������������������������������������������������������  15.19 Dehler v Ottawa Civic Hospital (1980) 25 OR (2d) 748, (1979) 29 OR (2d) 677���������������������������������������������������������������������������������������������  12.2 Devon Partnership NHS Trust v Secretary of State for Health and Social Care [2021] EWHC 101 (Admin), [2021] 1 WLR 2945, [2021] 1 WLUK 238��������������������������������������������������������������  9.10 Dobson v North Tyneside Health Authority (1997) Med LR 110, [1997] 1 WLR 596, (1998) Med LR 6(2) 247����������������������   18.31, 18.32, 18.36 Dodsbo v Sweden [2006] 1 WLUK 266, (2007) 45 EHRR 22��������������������������  18.37 Doodeward v Spence (1908) 6 CLR 406, 15 ALR 105, 95 R (NSW) 107 (Australia HC)��������������������������������������������������   18.30, 18.31, 18.32, 18.34, 18.35, 19.21 Doogan v Greater Glasgow & Clyde Health Board [2014] UKSC 68, [2015] AC 640, [2015] 2 WLR 126����������������������������������������������  9.6 Dubská v Czech Republic (28859/11) [2014] 12 WLUK 431, (2015) 61 EHRR 22��������������������������������������������������������������������������������������  7.27 Duce v Worcestershire Acute Hospitals NHS Trust [2018] EWCA Civ 1307, [2018] 6 WLUK 96, [2018] PIQR P18����������������������������  1.21 E E (a child), Re [2018] EWCA Civ 550, [2019] 1 WLR 594, [2018] 3 WLUK 120�������������������������������������������������������������������������������������  4.35 E (a minor) (medical treatment), Re [1991] FCR 771, [1991] 2 FLR 585, [1992] Fam Law 15, 7 BMLR 117������������������������   10.9, 10.22, 13.6 E (a minor), Re [1992] 2 FCR 219, [1993] 1 FLR 386, [1993] Fam Law 116������������������������������������������������������������   4.8, 4.10, 4.24, 14.1, 14.20 E (Children: Blood Transfusion), Re [2021] EWCA Civ 1888, [2022] 2 WLR 395, [2021] 12 WLUK 169�������������������������������������������   4.5, 4.23 E v London Borough of Hammersmith and Fulham and W [2021] EWCOP 7, [2021] 1 WLUK 304, [2021] COPLR 189������������������������   2.18, 3.39 E v Somerset Partnership NHS Trust [2016] 1 WLUK 78���������������������������������  17.17 East Lancashire Hospitals NHS Trust v GH [2021] EWCOP 18, [2021] 3 WLUK 87����������������������������������������������������������������������������   2.22, 12.26 Elberte v Latvia (Application No 61243/08) (2015) 61 EHRR 7, 38 BHRC 101, [2015] Inquest Law Reports 162���������������������������������   18.2, 19.2 EOA, Re. See Greenwich RLBC v EOA Evans v Alder Hey Children’s NHS Foundation Trust [2018] 3 WLUK 483������������������������������������������������������������������������������������   15.71, 15.74 Evans v Amicus Healthcare Ltd [2004] EWCA Civ 727, [2005] Fam 1, [2004] 3 WLR 681�������������������������������������������������������  11.2, 11.18, 11.30 Evans v UK [2006] All ER D 82 (Mar)����������������������������������������������������������������  10.7 Evans v United Kingdom (Application No. 6339/05) [2007] 1 FLR 1990, [2007] 2 FCR 5, (2008) 46 EHRR 34������������������������������������  11.25 F F (A Child) (International Relocation Case), Re [2015] EWCA Civ 882, [2015] 8 WLUK 74, [2017] 1 FLR 979��������������������������������   3.16, 4.40 F (in utero), Re [1988] Fam 122, [1988] 2 All ER 193����������������������������������������  12.2 F (Mental Capacity: Interim Jurisdiction), Re [2009] 6 WLUK 748, [2010] 2 FLR 28, (2009) 12 CCL Rep 530���������������������������������������������������  6.39

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Table of Cases F (mental patient: sterilisation), Re [1990] 2 AC 1, [1989] 2 WLR 1025, [1989] 2 All ER 545������������������������������   3.1, 4.1, 10.8, 9.22, 10.9, 10.11, 10.12, 10.13, 10.15, 10.22, 12.1, 12.3 F v F (MMR vaccine) [2013] EWHC 2683 (Fam), [2013] 9 WLUK 83, [2014] 1 FLR 1328 �����������������������������������������������������������������  4.18 F, Re [2009] EWHC B30 (Fam)������������������������������������������������������������������   2.18, 2.21 FG, Re see NHS Trust v FG FM (a child) v Ipswich Hospital NHS Trust [2015] EWCA 775 (QB), [2015] 3 WLUK 853�������������������������������������������������������������������������������������  1.23 Fernandes v Portugal (56080/13) [2017] 12 WLUK 517, (2018) 66 EHRR 28, (2018) 163 BMLR 182����������������������������������������������������������������  7.26 Fixsler v Manchester University NHS Foundation Trust [2021] EWCA Civ 1018, [2021] 4 WLR 123, [2021] 7 WLUK 114���������������������������������������������   3.14, 4.26, 4.28, 14.24, 14.27 Forge Care Homes v Cardiff & Vale University Health Board [2016] EWCA Civ 26, (2016) 19 CCL Rep 62, (2016) 149 BMLR 98�����������������������������������������������������������������������������������������������  8.19 Fox v Riverside Mental Health NHS Trust [1993] 10 WLUK 259, [1994] 1 FLR 614, [1994] 2 FCR 577�������������������������������������������������   3.6, 13.22 Freeman v Home Office (No 2) [1984] QB 524, [1984] 1 All ER 1036����������������  1.4 Frenchay Healthcare NHS Trust v S [1994] 1 WLR 601, [1994] 2 All ER 403, [1994] 1 FLR 485, [1994] 3 FCR 121, [1994] Fam Law 320��������������������������������   15.9, 15.10, 15.68, 15.69 G G (Children) (Abduction: Children’s Objections), Re [2010] EWCA Civ 1232, [2010] 9 WLUK 376, [2011] 1 FLR 1645�����������������������  4.12 G (Children) (Religious Upbringing: Education), Re [2012] EWCA Civ 1233, [2012] 10 WLUK 154, [2013] 1 FLR 677�������������   14.1, 14.21, 14.31 G (Human Fertilisation and Embryology Act 2008), Re [2016] EWHC 729 (Fam), [2016] 4 WLR 65, [2016] 4 WLUK 57������������   11.16, 11.29 G, Re [2016] EWCOP 37, [2016] 7 WLUK 117����������������������������������   3.34, 5.23, 6.9 GF, Re [1991] 4 WLUK 24, [1992] 1 FLR 293, [1991] FCR 786�������������������������������������������������������������   7.19, 10.9, 10.21, 10.22 G-U (a minor) (wardship), Re [1984] FLR 811, [1984] 1 WLUK 195, [1984] Fam Law 248�������������������������������������������������������������  9.21 G v Higson [2020] WL 03513668 (19 March 2020)������������������������������������������  17.17 Garcia v Switzerland (Application No 10148/82) (decision 14 March 1985)������  4.25 Gard v United Kingdom (Admissibility) (39793/17) [2017] 6 WLUK 575, [2017] 2 FLR 773, (2017) 157 BMLR 59, (2017) 65 EHRR SE9 �������������������������������������������������������   4.25, 4.26, 4.36, 15.1, 15.23, 15.56, 15.71 Geys v Société Générale, London Branch [2012] UKSC 63, [2013] 1 AC 523, [2013] 2 WLR 50���������������������������������������������������������������  1.6 Gillick v West Norfolk & Wisbech AHA [1986] AC 112, [1985] 3 WLR 830, [1985] 3 All ER 402�������������������������������   4.5, 4.4, 4.5, 4.6, 4.7, 4.8, 4.10, 4.11, 4.12, 4.13, 4.14, 4.15, 4.16, 4.17, 4.19, 4.23, 4.24, 4.25, 4.43, 4.45, 6.11, 6.26, 9.20, 13.3, 13.5, 13.9, 13.10, 13.11, 13.12, 13.15, 14.20, 14.21, 14.31, 14.32, 17.14, 19.4, 19.12, 19.15, 19.19 Glass v United Kingdom (61827/00) [2004] 3 WLUK 240, [2004] 1 FLR 1019, [2004] 1 FCR 553, (2004) 39 EHRR 15�������������   1.24, 4.25

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Table of Cases Gold v Haringey Health Authority [1988] QB 481, [1987] 3 WLR 649, [1987] 2 All ER 888��������������������������������������������������������������������������������������  1.20 Gonzales v Carhart (2007) 550 US 124����������������������������������������������������������������  9.34 Goodwin v United Kingdom (28957/95) (2002) EHRR 18, [2002] 7 WLUK 347, [2002] IRLR 664, [2002] 2 FLR 487��������������������������������������  1.9 Great Ormond Street Hospital for Children NHS Foundation Trust v MBC [2021] EWHC 2574 (Fam), [2021] 9 WLUK 329, (2021) 182 BMLR 72�����������������������������������������������������������������   4.31, 4.34, 6.77, 14.30, 15.84 Great Ormond Street Hospital for Children NHS Foundation Trust v MK. See CK (A Child), Re Great Ormond Street Hospital for Children NHS Foundation Trust v MX [2020] EWHC 1958 (Fam), [2020] 7 WLUK 369, [2020] Med LR 509������������������������������������������������������������������������������������  14.21 Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWHC 972 (Fam), [2017] 4 WLUK 260����������������������������������������������������������������������   3.28, 4.20, 4.36, 6.77 Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWHC 1909 (Fam), [2017] 4 WLR 131, [2018] 1 All ER 623�������������������������������������������������������������������������   15.82, 15.85 Great Western Hospitals NHS Foundation Trust, v AA [2014] EWHC 166 (Fam), [2014] 2 FLR 1206, [2015] 1 FCR 273�����������������������  12.14 Greenwich RLBC v EOA [2021] EWCOP 20, [2021] 1 WLUK 514, [2021] COPLR 564���������������������������������������������������������������������������������������  3.39 Guy’s and St Thomas’ Children’s NHS Foundation Trust v Knight [2020] EWHC 3555 (Fam), [2021] 1 WLR 2705, [2020] 12 WLUK 398���������������������������������������������������������������������������������������������  18.21 Guy’s and St Thomas’ Children’s NHS Foundation Trust v Knight [2021] EWHC 25 (Fam), [2021] 1 WLUK 21������������������   4.27, 4.30, 4.34, 4.38, 4.39, 15.6, 15.49, 15.78 Guys and St Thomas’ NHS Foundation Trust v R [2020] EWCOP 4, [2020] 4 WLR 96, [2020] 4 All ER 312�����������������������������   2.23, 4.13, 5.79, 6.9, 6.14, 6.15, 6.21, 12.13, 12.20, 12.21, 12.22, 12.23, 12.24, 12.25, 12.32, 12.40 Guys and St Thomas’ NHS Foundation Trust v X [2019] EWCOP 35, [2019] 7 WLUK 673�����������������������������������������������������������������������������������  12.21 H H (A Child) (Parental Responsibility: Vaccination), Re [2020] EWCA Civ 664, [2021] Fam 133, [2020] 3 WLR 1049����������������������   4.19, 4.24 H (A Child) (Surrogacy Breakdown), Re [2017] EWCA Civ 1798, [2017] 11 WLUK 420, [2018] 1 FCR 335 ��������������������������������������   11.52, 11.53 H (H) v Deputy Prosecutor of the Italian Republic, Genoa [2012] UKSC 25������  4.12 H v Norway (1992) 73 DR 155���������������������������������������������������������������������������  12.10 H v S (Surrogacy Agreement) [2015] EWFC 36������������������������������������������������  11.52 H West & Sons Ltd v Shephard [1964] AC 326, [1963] 2 WLR 1359, [1963] 2 All ER 625��������������������������������������������������������������������������������������  4.38 HE v A Hospital NHS Trust [2003] EWHC 1017 (Fam), [2003] 5 WLUK 168, [2003] 2 FLR 408���������������������������������������������������������   1.35, 2.34 HL v United Kingdom (Application 45508/99) (2005) 40 EHRR 32, (2004) 40 EHRR 761, [2004] All ER (D) 39 (Oct)������������������������������   5.24, 5.30 Harrow Clinical Commissioning Group v IPJ [2018] EWCOP 44, [2019] 4 WLUK 531, [2019] COPLR 333���������������������������������������������������  7.18 Hart v Brown 289 A 2d 386 (1072)��������������������������������������������������������������������  19.16 Hartstone v Gardner [2008] 3 WLUK 336, [2008] 2 FLR 1681, [2013] Inquest LR 1������������������������������������������������������������������������������������  18.37

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Table of Cases Haughian v Paine [1987] 4 WWR 97, 37 DLR (4th) 624 (Sask CA)�������������������  1.27 Havering LBC v AEL [2021] EWCOP 9, [2021] 1 WLUK 375, [2021] COPLR 364���������������������������������������������������������������������   5.53, 5.57, 5.83 Health Authority v DE see NHS Trust v DE Hendricks v Netherlands (1982) 5 EHRR 223�����������������������������������������������������  4.25 Herczegfalvy v Austria (A/242-B) [1992] 9 WLUK 129, (1993) 15 EHRR 437�������������������������������������������������������������������������������   3.8, 5.19, 5.20, 13.19, 15.21 Heart of England NHS Foundation Trust v JB (by her litigation friend, the Official Solicitor) [2014] EWHC 342 (COP), [2014] 2 WLUK 529, (2014) 137 BMLR 232�������������������������������������������������   2.10, 2.16 Hillingdon LBC v Neary [2011] EWHC 1377 (COP), [2011] 4 All ER 584, [2011] 6 WLUK 166��������������������������������������������������������������  6.60 Hoffman v Austria (1993) 17 EHRR 293, [1994] 1 FCR 193������������������������������  4.25 Hospital Trust v V [2017] EWCOP 20, [2017] 10 WLUK 502, [2018] COPLR 56 ��������������������������������������������������������������������������������������  10.16 Hristozov v Bulgaria (47039/11 and 358/12)�������������������������������������������������������  7.27 Human Fertilisation and Embryology Act 2008 (Case AL), Re [2018] EWHC 1300 (Fam), [2018] 5 WLUK 504��������������������������������  11.29 Hunter v Hanley, 1955 SC 200, 1955 SLT 213, [1955-95] PNLR 1��������������������  1.20 I I (Human Fertilisation and Embryology Act 2008), Re [2016] EWHC 791 (Fam), [2016] 4 WLUK 207, [2017] 1 FLR 998 �������������������  11.29 IH (Observance of Muslim Practice), Re [2017] EWCOP 9, [2017] 6 WLUK 176, [2017] COPLR 281�������������������������������������������������������������  14.18 Imperial College Healthcare NHS Trust v MB [2019] EWCOP 29, [2019] 5 WLUK 673�������������������������������������������������������������������������������������  3.45 Imperial College Healthcare NHS Trust v MB [2019] EWCOP 30, [2019] 7 WLUK 320����������������������������������������������������������������������������   2.15, 3.13 ITW v Z; Re M (statutory will) [2009] EWHC 2525 (Fam), [2011] 1 WLR 344, [2011] 3 All ER 682��������������������������������������������������������   3.21, 10.8 J J (a minor) (child in care: medical treatment), Re [1993] Fam 15, [1992] 3 WLR 507, [1992] 4 All ER 614�����������������������������   1.6, 1.7, 1.16, 2.27, 2.31, 6.71, 7.5, 7.7, 8.23, 15.70 J (a minor) (prohibited steps order: circumcision), Re [1999] 11 WLUK 841, [2000] 1 FLR 571, [2000] 1 FCR 307����������������������   4.18, 14.20 J (a minor) (prohibited steps order: circumcision), Re [1999] 5 WLUK 55, [1999] 2 FLR 678, [1999] 2 FCR 345������������������������������������  6.68 J (a minor) (wardship: medical treatment), Re [1991] Fam 33, [1991] 2 WLR 140, [1990] 3 All ER 930, [1990] 2 Med LR 67����������������������������������������������������������������������   4.16, 4.21, 9.6, 18.23 J (an adult) (deprivation of liberty: safeguards), Re [2015] EWCOP 5, [2015] Fam 291, [2015] 3 WLR 683�������������������������   5.3, 5.81, 5.87 J (specific issue orders: child’s religious upbringing & circumcision). See J (a minor) (prohibited steps order: circumcision), Re J v Foundation Trust [2009] EWHC 2972 (Fam), [2010] Fam 70, [2010] 3 WLR 840�����������������������������������������������������������������������������   5.99, 5.100 J v G (Parental Orders) [2013] EWHC 1432 (Fam), [2013] 3 WLUK 695, [2014] 1 FLR 297�������������������������������������������������������   11.7, 11.46 JA (A Minor) (Medical Treatment: Child Diagnosed with HIV), Re [2014] EWHC 1135 (Fam), [2014] 4 WLUK 495, [2015] 2 FLR 1030������������������������������������������������������������������������������������������   4.5, 14.31

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Table of Cases JB (A Child) (Surrogacy: Immigration), Re [2016] EWHC 760 (Fam), [2016] 4 WLUK 103�����������������������������������������������������������������������������������  11.51 JB (Capacity: Sexual Relations), Re [2020] EWCA Civ 735, [2021] Fam 37, [2020] 3 WLR 1014 ���������������������������������������������������������������������  10.10 JE v DE [2006] EWHC 3459 (Fam), [2006] 12 WLUK 635, [2007] 2 FLR 1150���������������������������������������������������������������������������������������������������  5.32 JK v A Local Health Board [2019] EWHC 67 (Fam), [2019] 11 WLUK 242, [2020] COPLR 246������������������������������   2.37, 3.4, 3.6, 3.8, 6.13, 6.15, 13.19, 13.21, 14.3, 17.43 JM (a child), Re [2015] EWHC 2832 (Fam), [2015] Med LR 544, (2016) 149 BMLR 150������������������������������������������   4.41, 6.15, 6.63, 10.24, 13.15 JR, GR, RR & YR v Switzerland No 22398/93 Dec 5/4/95, DR 81���������������������  4.11 JS (A Child) (Disposal of Body: Prospective Orders), Re [2016] EWHC 2859 (Fam), [2017] 4 WLR 1, [2016] 11 WLUK 312���������������������  4.18 JS C & CH C v Wren [1987] 1 WLUK 202, [1987] 2 WWR 669������������������������  9.21 Jake (a child) (withholding of medical treatment), Re [2015] EWHC 2442 (Fam), [2016] 2 FCR 118, [2015] Med LR 518�������������   4.31, 4.34 Janaway v Salford Area Health Authority [1989] AC 537, [1988] 3 WLR 1350, [1988] 3 All ER 1079 ��������������������������������������������������������������  9.6 Jefferson v Griffin Spalding County Hospital Authority (1981) 274 SE 2d 457���������������������������������������������������������������������������������������������  12.10 Jehova’s Witnesses of Moscow v Russia (Application No 302/02) [2016] 6 WLUK 166, (2011) 53 EHRR 4�����������������������������������������������������  14.2 Jepson v Chief Constable of West Mercia Police Constabulary [2003] EWHC 3318 (QB), [2003] 12 WLUK 12 ����������������������������������������������������  9.17 Johansen v Norway (1996) 23 EHRR 33, [1996] ECHR 17383/90���������������������  4.25 Jones v Royal Wolverhampton Hospitals NHS Trust [2015] EWHC 2154 (QB), [2015] 6 WLUK 838��������������������������������������������   1.20, 1.23 Judicial Visits to P, Re [2022] EWCOP 5, [2022] 2 WLUK 149��������������������������  6.28 K K (A Child) (Medical Treatment: Declaration), Re [2006] EWHC 1007 (Fam), [2006] 5 WLUK 223, [2006] 2 FLR 883������������������  18.23 K (a child) (secure accommodation order: right to liberty), Re [2001] Fam 377, [2001] 2 WLR 1141, [2001] 1 FCR 249�������������������������������������  13.11 K (Forced Marriage: Passport Order), Re [2020] EWCA Civ 190, [2020] Fam 283, [2020] 2 WLR 1279����������������������������������������������������������������������  4.17 K, Re [2002] 2 WLR 1141������������������������������������������������������������������������������������  5.70 KD v London Borough of Havering see LD, Re KH (medical treatment: advanced care plan), Re; see NHS Trust v H Kalashnikov v Russia [2003] 36 EHRR 34����������������������������������������������������������  7.24 Keegan v Ireland [1994] 5 WLUK 327, [1994] 3 FCR 165, (1994) 18 EHRR 342 �����������������������������������������������������������������������������������������������  4.12 Keenan v United Kingdom (27229/95) [2001] 4 WLUK 67, (2001) 33 EHRR 38, 10 BHRC 319������������������������������������������������   17.21, 17.25, 17.26, 17.27, 17.29 King (A Child), Re [2014] EWHC 2964 (Fam), [2014] 9 WLUK 186, [2014] 2 FLR 855����������������������������������������������������������������   4.17, 4.26, 4.39 Kings College Hospital NHS Foundation Trust v C & V [2015] EWCOP 80, [2015] 11 WLUK 797, [2016] COPLR 50������������   2.14, 2.17, 2.22, 2.27, 2.29, 15.60, 17.12, 17.16, 17.47 King’s College Hospital NHS Foundation Trust v FG [2019] EWCOP 7, [2019] 1 WLUK 479��������������������������������������������������������������������������������   6.5, 6.9 Kings College Hospital NHS Foundation Trust v Thomas [2018] EWHC 127 (Fam), [2018] 1 WLUK 452, [2018] 2 FLR 1028�����������   4.26, 4.36

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Table of Cases Kirklees Council v (1) RE (2) SE (by his guardian, Steven Anderson) (3) Leeds Teaching Hospital NHS Trust [2014] EWHC 3182 (Fam), [2015] 1 FLR 1316, [2015] 2 FCR 438��������������������������������������������������������  4.19 Kokkinakis v Greece (A/260-A) [1993] ECHR 20, (1994) 17 EHRR 397����������  14.2 L L (A Child) (medical treatment: benefit), Re, sub nom Winston-Jones (a child) (medical treatment: parent’s consent), Re [2004] EWHC 2713 (Fam), [2005] 1 FLR 491, [2004] All ER (D) 313 (Oct)���������������������   4.21, 4.37 L (Children) (Specific Issues: Temporary Leave to Remove from the Jurisdiction: Circumcision), Re [2016] EWHC 849 (Fam), [2016] 4 WLUK 34, [2017] 1 FLR 1316������������������������������������������������������������������  4.18 L (Patient: Non Consensual Treatment), Re [1996] 12 WLUK 307, [1997] 2 FLR 837, [1997] 1 FCR 609����������������������������������������������������������  12.6 L (vulnerable adults with capacity: court’s jurisdiction), Re [2012] EWCA Civ 253, [2013] Fam 1, [2012] 3 WLR 1439���������������������������������������������������������������������   3.42, 3.43, 6.13, 17.35 L LBC v G [2007] EWHC 2640 (Fam), [2007] 11 WLUK 331, [2009] 1 FLR 414���������������������������������������������������������������������������������   6.58, 6.83 L v Human Fertilisation & Embryology Authority & Secretary of State for Health [2008] EWHC 2149 (Fam), [2009] Eu LR 107, [2008] 2 FLR 1999�����������������������������������������������������������������������������   9.21, 11.27 L, Re [2000] EWCA Civ 194��������������������������������������������������������������������������������  4.25 LC (medical treatment: sterilisation), Re [1993] 10 WLUK 345, [1997] 2 FLR 258, [1997] Fam Law 604��������������������������������   10.9, 10.11, 10.18 LD, Re [2009] 10 WLUK 485, [2010] 1 FLR 1393, (2009) 12 CCL Rep 671����  6.29 Lakey v Medway Foundation Trust [2009] EWHC 3574 (QB), [2009] 11 WLUK 492, [2009] Inquest LR 267������������������������������������������������������  18.37 Lambert v France (Application No 46043/14) (2016) 62 EHRR 2, 38 BHRC 709, (2015) 145 BMLR 28���������������������������   1.24, 7.27, 15.10, 15.23, 15.24, 15.25, 15.26, 15.44, 15.58 Law Hospitals NHS Trust v Lord Advocate (No 2) 1996 SLT 869, 1996 SCLR 566, [1996] 4 WLUK 223, [1996] 2 FLR 407������������������������  15.21 Leeds Teaching Hospitals NHS Trust v A [2003] EWHC 259 (QB), [2003] 1 FLR 1091, [2001] 1 FCR 599������������������������������������������������������  11.30 Leigh v Gladstone [1909] 26 TLR 139, [1909] 1 WLUK 8�������������������������������  13.16 Lim Poh Choo v Camden and Islington Area Health Authority [1980] AC 174, [1979] 3 WLR 44, [1979] 2 All ER 910�����������������������������������������  4.38 Little v Little (1979) 576 W 2d 493��������������������������������������������������������������������  19.16 Liverpool City Council v CMW [2021] 7 WLUK 644, [2021] EWCOP 50����������  2.8 Local Authority v A (Dispensing with Service) [2020] EWHC 2741 (Fam), [2020] 4 WLR 157, [2020] 10 WLUK 195���������������������������������������  6.77 Local Authority v AB, SB [2020] EWCOP 32�����������������������������������������������������  10.7 Local Authority v BF [2018] EWCA Civ 2962, [2018] 12 WLUK 584, [2019] COPLR 150���������������������������������������������������������������������������������������  5.85 Local Authority v E [2012] EWHC 1639 (COP), [2012] 6 WLUK 325, [2012] 2 FCR 523�����������������������������������������������������������   2.42, 5.17, 5.118, 8.25, 13.25, 13.30, 13.31 Local Authority v JB [2021] UKSC 52, [2021] 3 WLR 1381, [2021] 11 WLUK 315���������������������������������������������������������   2.6, 2.7, 2.8, 2.9, 2.14, 2.16, 9.23, 10.7, 10.10, 10.17 Local Authority v JB. See JB (Capacity: Sexual Relations), Re Local Authority v K (by the Official Solicitor) [2013] EWHC 242 (COP), [2014] 1 FCR 209, (2013) 130 BMLR 195�����������������   10.1, 10.9, 10.11, 10.12, 10.18, 10.20 Local Authority v M [2021] EWFC 10, [2021] 2 WLUK 358�����������������������������  7.34 Local Authority v M [2021] EWHC 2794 (Fam), [2021] 10 WLUK 222������  6.58, 6.86

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Table of Cases Local Authority v P [2018] EWCOP 10, [2018] 4 WLUK 278, [2019] COPLR 44����������������������������������������������������   3.36, 3.37, 3.38, 3.39, 5.23, 6.6, 6.7, 6.9, 10.1, 10.8, 10.19 Local Authority v P [2021] EWCOP 48, [2021] 6 WLUK 615����������������������������  6.59 Local Authority v PB [2011] COPLR Con Vol 166����������������������������������������������  8.24 Local Authority v RS (Capacity) [2020] EWCOP 29, [2020] 6 WLUK 375, [2020] COPLR 705���������������������������������������������������������������  2.17 Local Authority v X [2016] EWCOP 50, 2016] 11 WLUK 550, [2017] COPLR 8���������������������������������������������������������������������������������������������  6.7 Local Authority X v (1) MM (by her litigation friend the Official Solicitor) (2) KM [2007] EWHC 2003 (Fam), [2007] 8 WLUK 178, [2009] 1 FLR 443����������������������������������������������������   2.7, 2.8, 3.21 Local Authority, a v Mrs A (by the Official Solicitor) & Mr A [2014] EWCOP 13����������������������������������������������������������������������������������������������������  10.7 Local Health Board v AB [2015] EWCOP 31, [2015] 4 WLUK 663, [2015] COPLR 412����������������������������������������������������������������������������������   5.5, 5.6 London NHS Trust v CD [2021] EWCOP 23, [2021] 3 WLUK 412�����������������  15.36 M M (adult patient) (minimally conscious state: withdrawal of treatment), Re [2011] EWHC 2443 (Fam), [2012] 1 WLR 1653, [2012] 1 All ER 1313����������������������������������������   10.8, 15.29, 15.30, 15.32, 15.86 M (an adult) (capacity; consent to sexual relations), Re [2014] EWCA Civ 37, [2015] Fam 61, [2014] 3 WLR 409����������������������������   2.14, 9.23 M (child: refusal of medical treatment), Re [1999] 7 WLUK 336, [1999] 2 FCR 577, [1999] FLR 1097�����������������������������������������������������������  4.23 M (Children) (Abduction: Rights of Custody), Re [2007] UKHL 55, [2008] 1 AC 1288, [2007] 3 WLR 975���������������������������������������������������������  4.12 M (Declaration of Death of a Child), Re [2020] EWCA Civ 164, [2020] 4 WLR 52, [2020] Med LR 165������������������������������������   4.35, 15.8, 18.12 M (Human Fertilisation Embryology Act 2008), Re [2016] EWHC 1572 (Fam)��������������������������������������������������������������������������������������������������  11.29 M (Human Fertilisation Embryology Act 2008), Re [2016] EWHC 1572 (Fam), [2016] 6 WLUK 763, [2016] Fam Law 1089������������������������  11.29 M (wardship: sterilisation), Re [1988] 1 WLUK 259, [1988] 2 FLR 497, [1988] Fam Law 434���������������������������������������������������������������  10.23 M (Withdrawal of Treatment: Need for Proceedings), Re [2017] EWCOP 19, [2018] 1 WLR 465, [2018] 2 All ER 551�����������   15.9, 15.12, 15.55 M v ABM University Health Board [2018] UKUT 120 (AAC), [2018] 3 WLUK 772, [2018] MHLR 310��������������������������������������������   3.38, 5.23 M v H (Private Law Vaccination) [2020] EWFC 93, [2020] 12 WLUK 242, [2021] 2 FLR 899����������������������������������������������������������������  4.19 M v Mrs N & Bury Clinical Commissioning Group & a Care Provider [2015] EWCOP 76, [2016] COPLR 88, (2015) 18 CCL Rep 603����������������������������������������������������   2.18, 3.20, 3.30, 15.6, 15.12, 15.29, 15.35, 15.42, 15.44, 15.77 M v W [2019] EWHC 648 (Fam), [2019] Fam 414, [2019] 3 WLR 1���������������  11.29 MB (An Adult: Medical Treatment) [1997] 2 FLR 426, [1997] 8 Med LR 217������������������������������������������������������������������   4.33, 5.115, 6.33, 9.28 MB (An Adult: medical treatment), Re [1997] EWCA Civ 3093, [1997] 3 WLUK 641����������������������������������������   2.6, 2.22, 2.30, 3.14, 9.26, 12.7, 12.8, 12.10, 12.13, 12.14, 12.15, 12.17, 12.20 MD v Nottinghamshire Health Care NHS Trust [2010] UKUT 59 (AAC), [2010] 2 WLUK 713, [2010] MHLR 93�����������������������������������  13.17 MIG, Re; Surrey CC v CA [2010] EWHC 785 (Fam), [2011] MHLR 108, [2011] Fam Law 29���������������������   5.34, 5.35, 5.36, 5.37, 5.40, 5.43

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Table of Cases MR v SR [2016] EWCOP 54, [2016] 12 WLUK 436, [2017] 1 Costs LR 71������������������������������������������������������������������������������������  6.60 MS v Croatia (Application No 75450/12) [2015] 2 WLUK 629, [2015] MHLR 294����������������������������������������������������������������������������������������  5.20 Mabon v Mabon [2005] EWCA Civ 634, [2005] Fam 366, [2005] 3 WLR 460 ������������������������������������������������������������������������������   4.11, 4.12 MacFarlane v Tayside Health Board [2000] 2 AC 59, [1999] 3 WLR 1301, [1999] 4 All ER 961���������������������������������������������������������������  10.3 Madyun, Re (1986) 573 A 2d 1259���������������������������������������������������������������������  12.10 Maher v Pennine Acute Hospitals NHS Trust [2011] 6 WLUK 562, [2012] JPL Law 25��������������������������������������������������������������������������������������  14.12 Malette v Shulman [1990] 3 WLUK 445, [1991] 2 Med LR 162, (1990) 67 DLR 321���������������������������������������������������������������������������   2.40, 14.2, 17.47 Malik v St George’s University Hospitals NHS Foundation Trust [2021] EWHC 1913 (QB), [2021] 7 WLUK 134, (2021) 181 BMLR 135��������������  1.27 Manchester City Council v G [2011] EWCA Civ 939, [2011] 8 WLUK 31, [2011] CP Rep 45������������������������������������������������������������������������������������������  6.60 Manchester University NHS Foundation Trust v Fixsler [2021] EWHC 1426 (Fam), [2021] 4 WLR 95, [2021] 5 WLUK 447������   4.21, 4.22, 4.28, 4.34, 6.74, 14.24, 14.25, 14.26 Manchester University NHS Foundation Trust v Fixsler [2021] EWHC 2664 (Fam), [2021] 10 WLUK 60�������������������������������������������������  14.28 Manchester University NHS Foundation Trust v Namiq [2020] EWHC 180 (Fam), [2020] 1 WLUK 217, [2020] Inquest LR 1�������������������  6.82 Manchester University NHS Foundation Trust v William Verden and Amy McClennan [2022] EWCOP 4, [2022] 2 WLUK 139�������������������  4.41 Maric v Croatia (Application No 50132/12) [2014] 6 WLUK 367, (2015) 60 EHRR 2, 38 BHRC 569���������������������������������������������������������������  18.2 Mazhar v Birmingham Community Healthcare Foundation NHS Trust [2020] EWCA Civ 1377, [2021] 1 WLR 1207, [2021] 2 All ER 693 ���������  5.85 McCann v United Kingdom (A/324) [1995] 9 WLUK 163, (1996) 21 EHRR 97������������������������������������������������������������������������������������������������  17.31 McDonald v Kensington & Chelsea [2011] UKSC 33, [2011] 4 All ER 881, [2011] PTSR 1266����������������������������������������������������������������������������������������  7.22 McNabb v Department of Corrections, 163 Wn 2d 393 (2008) Washington State Supreme Court�����������������������������������������������������������������������������������  17.22 Medhurst v Medhurst 46 OR (2d) 263 (1984)������������������������������������������������������  12.2 Mental Health Trust v DD [2015] EWCOP 4, [2015] 2 WLUK 81�����������   10.1, 10.7, 10.8, 10.9, 10.12, 10.13, 10.15 Mental Health Trust v ER [2021] EWCOP 32, [2021] 4 WLUK 504, [2021] COPLR 353�������������������������������������������������������������������������������������  13.28 Molka v Poland (Application No 56550/00) (unreported,11 April 2006), ECtHR�����������������������������������������������������������������������������������������������������������  7.22 Montgomery v Lanarkshire Health Board [2015] UKSC 11, [2015] AC 1430, [2015] 2 WLR 768�����������������������������   1.4, 1.5, 1.10, 1.11, 1.14, 1.19, 1.20, 1.21, 1.22, 1.23, 1.24, 1.27, 1.38, 2.10, 2.22, 3.28, 9.20, 10.3, 11.31, 19.3 Moore v Regents University of California (1990) 793 P 2d 479������������������������  18.28 Mouisel v France (67263/01) [2002] 11 WLUK 419, (2004) 38 EHRR 34���������  5.21 Munjaz v United Kingdom (Application No 2913/06) [2012] 7 WLUK 517, [2012] MHLR 351���������������������������������������������������������   5.5, 6.15 N N (A Child), Re [2007] EWCA Civ 1053, [2007] 7 WLUK 720, [2008] 1 FLR 198����������������������������������������������������������������������������������������  11.52

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Table of Cases N (an adult) (Court of Protection: jurisdiction), Re [2015] EWCA Civ 411, [2016] Fam 87, [2015] 3 WLR 1585�������������������������������������   8.24, 8.25 N v ACCG [2017] UKSC 22, [2017] AC 549, [2017] 2 WLR 1011���������������������������������������������������������   3.33, 6.2, 6.6, 6.19, 6.59, 8.24 NH v Abertawe Bro Morgannwg University Local Health Board (27 June 2016)���������������������������������������������������������������������������������������������  17.17 NHS Cumbria CCG v Rushton [2018] EWCOP 41, [2018] 12 WLUK 706, [2019] COPLR 283����������������������������   2.38, 15.16, 15.48, 15.58 NHS Foundation Trust v AB [2019] EWCOP 45, [2019] 10 WLUK 315���������������������������������������������������������������������������������������������  10.16 NHS Foundation Trust v Expectant Mother [2021] EWCOP 33, [2021] 5 WLUK 258�����������������������������������������������������������������   12.4, 12.9, 12.26 NHS Foundation Trust v MB [2020] EWHC 882 (QB)���������������������������������������  7.23 NHS Foundation Trust v MC [2020] EWCOP 33, [2020] 6 WLUK 413, [2020] COPLR 731����������������������������������������������������   3.26, 19.16 NHS Foundation Trust v Ms X [2014] EWCOP 35, [2015] 2 FCR 418, [2015] COPLR 11���������������������������������������������������������   3.19, 6.28, 13.26, 13.27, 13.29, 13.30, 13.31, 15.59 NHS Foundation Trust v QZ [2017] EWCOP 11, [2017] 6 WLUK 45����������������  4.40 NHS Tameside & Glossop CCG v CR [2021] EWCOP 19, [2021] 3 WLUK 199������������������������������������������������������������������������������������������   3.39, 5.2 NHS Trust A v H [2001] 3 WLUK 838, [2001] 2 FLR 501, [2002] 1 FCR 713 ��������������������������������������������������������������������������������������  15.49 NHS Trust A v M [2001] Fam 348, [2001] 2 WLR 942, [2001] 1 All ER 801����������������������������������������������������������   4.35, 15.5, 15.8, 15.9, 15.17, 15.18, 15.19, 15.20, 15.21, 15.22, 15.28, 15.69 NHS Trust v A (A Child) [2007] EWHC 1696 (Fam), [2007] 7 WLUK 504, [2008] 1 FLR 70������������������������������������������������������������������  14.21 NHS Trust v A [2013] EWHC 2442 (COP), [2014] Fam 161, [2014] 2 WLR 607���������������������������������������������������   5.5, 5.6, 5.85, 12.18, 13.20, 14.3, 17.12, 17.41, 17.46 NHS Trust v A [2014] EWHC 1445 (Fam), [2014] 3 WLUK 623, [2014] Fam. Law 1229���������������������������������������������������������������������������   4.5, 9.23 NHS Trust v A [2015] EWCOP 71, [2016] COPLR 30, (2016) 148 BMLR 179�����������������������������������������������������������������������������������������������  5.6 NHS Trust v B [2014] EWHC 3486 (Fam), [2014] 8 WLUK 25����������������   4.24, 4.36 NHS Trust v Baby X [2012] EWHC 2188 (Fam), [2013] 1 FLR 225, (2012) 127 BMLR 188����������������������������������������������������������������������������������  3.18 NHS Trust v CD [2015] EWCOP 74, [2016] COPLR 1, (2016) 149 BMLR 137��������������������������������������������������������������������������������������   5.6, 5.78 NHS Trust v CX (Medical Treatment: Gillick Competence: Consent to Treatment) [2019] EWHC 3033 (Fam), [2019] 10 WLUK 577, (2020) 174 BMLR 119�����������������������������������������������������������������������   2.27, 14.31 NHS Trust v D (a minor) [2021] EWHC 2676 (Fam), [2021] 10 WLUK 70�������  4.41 NHS Trust v D (Out of Hours Application. See NHS Trust v D (a minor) NHS Trust v D [2003] EWHC 2793 (Fam), [2004] 1 FLR 1110, [2004] Lloyd’s Rep Med 107���������������������������������������������������������������������������   9.22, 9.29 NHS Trust v D [2012] EWHC 886 (COP), [2012] 4 WLUK 260, (2012) 162 NLJ 1421������������������������������������������������������������������   2.35, 6.45, 6.61 NHS Trust v D [2000] 7 WLUK 97, [2000] 2 FLR 677, [2000] 2 FCR 577����������������������������������������������������������������������������������������   15.21, 18.23 NHS Trust v DE [2013] EWHC 2562 (Fam), [2013] FCR 343, [2013] Med LR 446����������������������������������������������   10.1, 10.7, 10.9, 10.10, 10.17 NHS Trust v Dr A [2013] EWCOP 2442 (COP)��������������   3.7, 5.95, 6.13, 6.15, 12.22, 13.23, 13.29, 13.30, 13.31 NHS Trust v DV (A Child)�����������������������������������������������������������������������������������  4.15

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Table of Cases NHS Trust v FG [2014] EWCOP 30, [2015] 1 WLR 1984, [2014] COPLR 598��������������������������������������������������   3.36, 3.38, 5.14, 5.61, 5.62, 5.63, 5.64, 5.65, 5.66, 5.74, 5.75, 5.78, 5.104, 6.28, 12.7, 12.11, 12.12, 12.13, 12.16, 12.17, 12.19, 12.35, 12.37, 13.29 NHS Trust v H; Re KH (medical treatment: advanced care plan) [2013] 1 FLR 1471, [2013] Med LR 70, [2013] Fam Law 34����������������������  4.31 NHS Trust v K [2012] EWHC 2922 (COP), [2013] 1 FCR 190, (2013) 129 BMLR 61������������������������������������������������������������������������������������  3.36 NHS Trust v L [2012] EWHC 2741 (COP), [2012] 8 WLUK 345�����   5.17, 13.1, 13.25 NHS Trust v MB [2006] EWHC 507 (Fam), [2006] 3 WLUK 379, [2006] 2 FLR 319��������������������������������������   3.17, 4.21, 4.21, 4.22, 4.35, 4.40, 18.21, 18.22 NHS Trust v P [2013] EWHC 50 (COP)��������������������������������������������   2.16, 9.22, 9.23 NHS Trust v Parents & S [2021] EWHC 594 (Fam), [2021] 3 WLUK 246��������  4.31 NHS Trust v SR [2012] EWHC 3842 (Fam), [2013] 1 FLR 1297, [2013] 1 FCR 356�����������������������������������������������������������������������������������������  4.36 NHS Trust v W [2015] EWHC 2778 (Fam), [2015] 10 WLUK 31, (2016) 148 BMLR 169�������������������������������������������������������������������������   4.40, 4.42 NHS Trust v X [2005] EWCA Civ 1145, [2005] 9 WLUK 2, [2006] Lloyd’s Rep Med 29���������������������������������������������   3.26, 4.37, 4.45, 14.13 NHS Trust v X [2021] EWHC 65 (Fam), [2021] 4 WLR 11, [2021] 1 WLUK 137���������������������������������������������������������   3.21, 4.1, 4.2, 4.3, 4.11, 4.13, 4.23, 5.76, 6.11, 6.15, 6.30, 6.63, 6.70, 13.3, 13.12, 14.31, 14.32 NHS Trust v XB [2020] EWCOP 71, [2020] 12 WLUK 553, [2021] COPLR 505���������������������������������������������������������������������������������������  2.13 NHS Trust v Y [2017] EWHC 2866 (QB), [2017] 11 WLUK 278�����������������������  15.1 NHS Trust v Y [2018] UKSC 46, [2019] AC 978, [2018] 3 WLR 751 �������   3.2, 4.11, 4.37, 6.6, 6.72, 15.4, 15.9, 15.47, 15.55, 15.56, 15.57, 15.58, 15.81 NHS Trusts v C (Medical Treatment and Reporting Restrictions Order) [2016] EWCOP 17, [2016] 3 WLUK 25, (2016) 152 BMLR 193���������������  6.41 NHS v VT [2013] 11 WLUK 326, [2014] COPLR 44����������������������������   14.13, 15.75 NRA, Re see P, Re NZ, Re [2021] EWCOP 16, [2021] 2 WLUK 411, (2021) 179 BMLR 67���������  15.39 Nathanson v Barnet & Chase Farm Hospitals NHS Trust [2008] EWHC 460 (QB), [2008] 3 WLUK 400��������������������������������������������������������������������  1.14 Negus v Guy’s and St Thomas’ NHS Foundation Trust [2021] EWHC 643 (QB), [2021] 3 WLUK 324, [2021] Med LR 449���������������������  1.10 Neilson v Denmark [1988] 11 EHRR 175������������������������������������������������������������  5.70 Nevmerzhitsky v Ukraine (54825/00) [2005] 4 WLUK 40, (2006) 43 EHRR 32, 19 BHRC 177�����������������������������������������������������������������������  17.24 Newcastle upon Tyne Hospitals NHS Foundation Trust v LM [2014] EWHC 454 (COP), [2015] 1 FCR 373, (2014) 137 BMLR 226��������   2.36, 2.37, 14.10, 14.12, 17.12, 17.35 Nicklinson v United Kingdom (Admissibility) (Application 2478/15) [2015] 6 WLUK 707, [2015] 61 EHRR SE7�������������������������������������   16.9, 16.10 Nielsen v Denmark (1988) 11 EHRR 175������������������������������������������   4.25, 6.8, 13.11 Norfolk & Norwich Healthcare (NHS) Trust v W [1996] 2 FLR 613, [1997] 1 FCR 269, (1997) 34 BMLR 16���������������������������������������������   9.28, 12.6 North Somerset Council v LW [2014] EWCOP 3, 2014] 5 WLUK 692����   6.60, 6.61, 12.20, 12.35 North West London Clinical Commissioning Group v GU [2021] EWCOP 59, [2021] 11 WLUK 134 ������������   3.29, 6.20, 6.23, 15.4, 15.16, 15.79

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Table of Cases Northamptonshire Healthcare NHS Foundation Trust v AB [2020] EWCOP 40, [2020] 8 WLUK 184, [2020] Med LR 495�������������������   2.29, 13.27 Northamptonshire Healthcare NHS Foundation Trust v ML [2014] EWCOP 2, [2014] 5 WLUK 538, [2014] COPLR 439�������������������������������  5.103 Nottinghamshire Healthcare NHS Trust v J [2014] EWHC 1136 (COP), [2014] 4 WLUK 334����������������������������������������������������   14.3, 14.5, 14.10 Nottinghamshire Healthcare NHS Trust v RC [2014] EWCOP 1317, [2014] COPLR 468, [2014] Med LR 260����������������   2.37, 3.7, 6.15, 13.30, 14.3, 14.7, 17.12, 17.35, 17.41, 17.43, 17.47 O O (a minor) (medical treatment), Re [1993] 3 WLUK 225, [1993] 2 FLR 149, [1993] 1 FCR 925��������������������������������������������������������������������  14.20 O’Brien v Cunard SS Co (1891) 28 NE 266���������������������������������������������������������  1.18 O’Donoghue v United Kingdom (Application No 34848/07) [2011] 1 FLR 1307, [2011] 2 FCR 197, (2011) 53 EHRR 1������������������������������������  10.8 Open Door & Dublin Well Woman v Ireland (A/246) [1992] 10 WLUK 368, (1992) 15 EHRR 244��������������������������������������������������������  12.10 Orange v Chief Constable of West Yorkshire [2001] EWCA Civ 611, [2002] QB 347, [2001] 3 WLR 736�������������������������������������������������   17.19, 17.29 Organ Retention Group Litigation, Re (AB v Leeds Teaching Hospital NHS Trust) [2004] EWHC 644 (QB), [2005] QB 506���������   18.32, 18.35, 18.36 Osman v United Kingdom (Application No 23452/94) [1999] 1 FLR 193, (1998) 29 EHRR 245, 5 BHRC 293����������������������������������������  15.20 OT, Re [2009] EWHC 633 (Fam), [2009] 23 WLUK 542����������������   3.17, 4.35, 6.21, 6.81, 15.22 Oxford University NHS Trust v AB [2019] EWHC 3516 (Fam), [2019] 10 WLUK 695�����������������������������������������������������������������������������������  15.8 P P & Q v Surrey CC [2011] EWCA Civ 190, [2012] Fam 170, [2012] 2 WLR 1056��������������������������������������������������������������������������������������������������  5.37 P (a minor) (wardship: sterilisation), Re [1989] 1 WLUK 247, [1989] 1 FLR 182, [1989] Fam Law 102���������������������������������������������������������������  10.23 P (Circumcision: Child in Care), Re [2021] EWHC 1616 (Fam), [2021] 6 WLUK 147, [2021] 3 FCR 235����������������������������������   4.18, 4.19, 14.20 P (Discharge of Party), Re [2021] EWCA Civ 512, [2021] 1 WLR 3098, [2021] 4 WLUK 121��������������������������������������������������������������  6.48 P (medical treatment: best interests), Re [2003] EWC 2327 (Fam), [2004] 2 FLR 1117, [2004] Fam Law 716��������������������������������   4.10, 4.14, 14.31 P v Cheshire West and Chester Council; Cheshire West and Chester Council v P; Surrey CC v P [2014] UKSC 19, [2014] AC 896, [2014] 2 WLR 642 ��������������������������������������������������   5.29, 5.30, 5.34, 5.35, 5.38, 5.39, 5.40, 5.41, 5.42, 5.43, 5.44, 5.45, 5.46, 5.47, 5.48, 5.49, 5.50, 5.51, 5.52, 5.53, 5.55, 5.56, 5.57, 5.63, 5.64, 5.68, 5.70, 5.74, 5.75, 5.105, 5.120, 5.121, 6.8 P v United Kingdom (56547/00) [2002] 7 WLUK 448, [2002] 2 FLR 631, [2002] 3 FCR 1, (2002) 35 EHRR 31�����������������������������������������������������������  11.1 P, In the matter of [2009] EWHC 163 (Ch), [2010] Ch 33, [2010] 2 WLR 253����������������������������������������������������������������������������������������  3.13 PC & NC v City of York Council [2013] EWCA Civ 478, [2014] Fam 10, [2014] 2 WLR 1��������������������������������������������������������������������������������  2.7

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Table of Cases PCT v P, AH & Local Authority [2009] EW Misc 10 (EWCOP), [2009] COPLR Con Vol 956�������������������������������������������������������������������������  2.13 PD v SD [2015] EWHC 4103 (Fam), [2015] 8 WLUK 297, [2016] Fam Law 561 �������������������������������������������������������������������������������������������������  4.5 PH v Eastern Regional Integrated Health Authority 2010 NLTD 34 (Supreme Court of Newfoundland)��������������������������������������������������������������  4.13 PL v Sutton Clinical Commissioning Group [2017] EWCOP 22, [2017] 9 WLUK 125, [2018] COPLR 100�������������������������������������������������  15.46 PPX v Aulakh [2019] EWHC 717 (QB), [2019] 3 WLUK 512�������������������������  17.17 PQ v RS (Legal Parenthood: Written Consent) [2019] EWFC 65, [2019] 10 WLUK 503, [2020] 1 FCR 384���������������������������������������   11.16, 11.29 PS (Incapacitated or Vulnerable Adult), Re [2007] EWHC 623 (Fam), [2007] 3 WLUK 256, [2007] 2 FLR 1083����������������������������������������������������  6.11 PS v LP [2013] EWHC 1106 (COP), [2013] 2 WLUK 148, (2013) 16 CCL Rep. 357������������������������������������������������������������������������������������������  3.21 PW (Jehovah’s Witness: Validity of Advance Decision), Re [2021] EWCOP 52, [2021] 9 WLUK 212, [2022] COPLR 201������������������   14.10, 14.17 Paposhvili v Belgium (41738/10) [2016] 12 WLUK 304, [2017] Imm AR 867, [2017] INLR 497��������������������������������������������������������������������  7.25 Parfitt v Guy’s and St Thomas’ Children’s NHS Foundation Trust [2021] EWCA Civ 362, [2021] 3 WLUK 317, [2021] Med LR 323�������������������������������������������������   4.26, 4.27, 4.38, 4.39, 15.78, 18.21 Parkinson v St James and Seacroft University Hospital NHS Trust [2001] EWCA Civ 530, [2002] QB 266, [2001] 3 WLR 376�����������������������  10.3 Paton v British Pregnancy Advisory Service Trustees [1979] QB 276, [1978] 3 WLR 687, [1978] 2 All ER 987D����������������������   2.24, 4.33, 9.20, 9.26, 10.4, 12.2, 12.10, 18.32 Paton v United Kingdom (8416/78) [1980] 5 WLUK 109, (1981) 3 EHRR 408����������������������������������������������������������������������   2.24, 4.33, 9.20, 9.26, 10.4, 12.2, 12.10 Payne v Payne [2001] EWCA Civ 166, [2001] Fam 473, [2001] 2 WLR 1826 ����� 4.25 Pearce v United Bristol Healthcare NHS Trust [1998] 5 WLUK 361, [1999] ECC 167, [1999] PIQR P53, (1999) 48 BMLR 118 ���������������   1.19, 1.20 Pennine Acute Hospitals NHS Trust v TM [2021] EWCOP 8, [2021] 1 WLUK 354, [2021] COPLR 472��������������������������������������������������������   2.7, 2.11 Pentiacova v Moldova (2005) 4 EHRR 209���������������������������������������������������������  7.22 Pepper v Royal Free London NHS Foundation Trust [2020] EWHC 310 (QB), [2020] 2 WLUK 511���������������������������������������������������������������������������  1.10 Peters v Netherlands (1994) 77A DR 75�������������������������������������������   4.11, 4.25, 15.19 Portsmouth NHS Trust v Wyatt [2004] EWHC 2247 (Fam), [2004] 10 WLUK 149, [2005] 1 FLR 21������������������������������������������������   4.21, 4.22, 4.37 Practice Guidance (CP: Serious Medical Treatment) [2020] EWCOP 2, [2020] 1 WLR 641, [2020] 3 All ER 873�����������   3.2, 5.65, 6.5, 6.31, 6.36, 10.1, 10.20, 10.21, 13.29, 15.16, 15.55, 15.56, 15.59 Practice Note (Official Solicitor to the Senior Courts: appointment in Family Proceedings and Proceedings under the Inherent Jurisdiction in relation to Adults 1 March 2013) [2013] Fam Law 744���������������������������  6.77 Practice Note (Official Solicitor, CAFCASS and the National Assembly for Wales: Urgent and out of hours cases in the Family Division of the High Court) [2006] 7 WLUK 825, [2006] 2 FLR 354���������������������������������  6.81 Practice Note (Official Solicitor: declaratory proceedings: medical & welfare decisions for adults who lack capacity) [2001] 2 FLR 158�����������  10.24 Practice Note (Official Solicitor: declaratory proceedings: medical & welfare decisions for adults who lack capacity) [2006] 7 WLUK 826, [2006] 2 FLR 373���������������������������������������������������������������������������������������������������  10.24 Practice Note (Official Solicitor: sterilisation) [1996] 1 WLUK 14, [1996] 2 FLR 111, [1996] 3 FCR 94�����������������������������������������������������������  10.24

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Table of Cases Press Association v Newcastle Upon Tyne Hospitals Foundation Trust [2014] EWCOP 6, [2014] 6 WLUK 494, [2014] COPLR 502���������������������  6.41 Pretty v United Kingdom (Application 2346/02) [2002] 4 WLUK 606, [2002] 2 FLR 45, [2002] 2 FCR 97, (2002) 35 EHRR 1�����������   1.24, 4.11, 7.25, 15.22, 16.6 Prince v Massachusetts (1944) 321 US Reports 158���������������������������������   4.24, 14.20 R R (a minor) (medical treatment), Re (Camden London Borough Council v R (a minor)) [2993] 5 WLUK 222, [1993] 2 FCR 544, [1993] 2 FLR 757���������������������������������������������������������������������������������������������������  14.20 R (a minor) (wardship: consent to treatment), Re [1992] Fam 11, [1991] 3 WLR 592, [1991] 4 All ER 177����������������������������������   4.1, 4.3, 4.5, 4.11, 4.13, 4.20, 4.23, 6.70, 9.21, 13.3, 14.31 R v Bourne [1939] 1 KB 687, [1938] 3 All ER 615, [1938] 7 WLUK 38��������������  9.2 R v Bournewood Community and Mental Health NHS Trust ex p L [1998] UKHL 24�������������������������������������������������������������������������   5.26, 5.27, 5.30 R v Bournewood Community and Mental Health NHS Trust ex p L [1999] 1 AC 458, [1998] 3 WLR 107, [1998] 3 All ER 289��������������������������  6.3 R v Bristol Coroner,ex p Kerr [1974] QB 652, [1974] 2 WLR 816, [1974] 2 All ER 719������������������������������������������������������������������������������������   18.29, 18.39 R v Brown [1994] 1 AC 212, [1993] 2 All ER 75, [1993] 2 WLR 556��������   1.9, 2.25, 15.58 R v Cambridge Health Authority, ex p B [1995] 1 WLR 898, [1995] 2 All ER 129, [1995] 3 WLUK 163����������������������������������������������   1.8, 8.23, 8.26 R v Clarence (Charles James) (1888) 22 QBD 23, [1888] 11 WLUK 21������������  1.31 R v Cox [1992] 12 BMLR 38������������������������������������������������������������������   16.18, 16.22 R v Criminal Injuries Compensation Board [1995] 1 WLR 845, [1995] 1 All ER 870, [1994] 2 FLR 861������������������������������������������������������������������  8.26 R v Cundick (1822) Dow & Ry NP 13�����������������������������������������������������������������  19.5 R v DPP, ex p Kebeline [1993] 3 WLR 175, (1999) 11 Admin LR 785, [1999] Crim LR 994��������������������������������������������������������������������������������������  16.5 R v Dr Collins & Ashworth Hospital Authority, ex p Brady [2000] 3 WLUK 304, [2000] Lloyd’s Rep Med 355, (2001) 58 BMLR 173, [2000] MHLR 17���������������������������������������������������������   13.17, 17.22, 17.36, 17.41, 17.47, 17.48 R v Dudley & Stephens (1884-85) 14 QBD 273��������������������������������������������������  4.33 R v Emmett (The Times, 15 October 1999)������������������������������������������������������������  1.9 R v Gibbins & Proctor [1918] 4 WLUK 25, (1918) 13 Cr App R 134���������������  15.10 R v Gwynedd County Council, ex p B [1992] 3 All ER 317, [1991] 3 WLUK 419, [1991] 2 FLR 365����������������������������������������������������������������  18.37 R v Human Fertilisation & Embryology Authority, ex p Blood [1999] Fam 151, [1997] 2 WLR 806, [1997] 2 All ER 687��������������  11.14, 11.21, 11.27 R v Iby [2005] NSWCCA 178������������������������������������������������������������������������������  18.4 R v Kelly [1999] QB 621, [1998] 3 All ER 741, [1999] 2 WLR 384�����   18.28, 18.32, 18.34, 19.21 R v Kirklees Metropolitan Borough Council, ex p C (a minor) [1992] 1 WLUK 487, [1992] 2 FLR 117, [1992] 2 FCR 321���������������������������������  13.10 R v Leonard Arthur (1981) 12 BMLR 1���������������������������������������������������������������  4.34 R v Lynn (1788) 1 Leach 497, 2 Term Rep 733���������������������������������������������������  19.5 R v Malcherek; R v Steel [1981] 1 WLR 690, [1981] 2 All ER 422, [1981] 3 WLUK 102�������������������������������������������������������������������������������������  18.5 R v McCarthy (Brendan Patrick) [2019] EWCA Crim 2202, [2020] 4 WLR 45, [2019] 12 WLUK 109, [2020] 2 Cr App R (S) 5����������������   1.9, 2.25 R v McDonald [1999] N I 150, [1999] 3 WLUK 67����������������������������������������������  9.3 R v Melin (Ozan) [2019] EWCA Crim 557, [2019] QB 1063, [2019] 3 WLR 150����������������������������������������������������������������������������������������������������  1.31

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Table of Cases R v North & East Devon Health Authority, ex p Coughlan [2001] QB 213, [2000] 2 WLR 622, [2000] 3 All ER 850, [1999] Lloyd’s Rep Med 306��������������������������������������������������������   1.7, 7.8, 8.6, 8.7, 8.19 R v North Derbyshire Health Authority, ex p Fisher [1997] 7 WLUK 276, (1998) 10 Admin LR 27, (1997-98) 1 CCL Rep 150, [1997] 8 Med LR 327, (1997) 38 BMLR 76�����������������������������������������������������   1.8, 8.28 R v North West Lancashire HA, ex p A [2000] 1 WLR 977, [1999] 7 WLUK 676, [2000] 2 FCR 525�������������������������������������������������   1.7, 7.23, 8.30 R v Portsmouth Hospitals NHS Trust, ex p Glass [1999] 7 WLUK 449, [1999] 2 FLR 905, [1999] 3 FCR 145, (1999) 50 BMLR 269���������������������  6.19 R v Richardson [1999] QB 444, [1998] 3 WLR 1292, [1998] 3 WLUK 508 �����  1.31 R v Secretary of State for Social Services, ex p Hincks [1980] 3 WLUK 179, (1980) 1 BMLR 93������������������������������������������������������������������������������������������  1.8 R v Sharp (1857) Dears & Bell 160��������������������������������������������������������������������  18.28 R v Smith [1973] 1 WLR 1510, [1974] 1 All ER 376, [1973] 7 WLUK 108�������  9.10 R v Tabassum [2000] 5 WLUK 243, [2000] 2 Cr App R 328, [2000] Lloyd’s Rep Med 404, [2000] Crim LR 686�������������������������������������������������  1.31 R v United Kingdom (1983) 33 DR 270���������������������������������������������������������������  16.5 R v Wallace (Berlinah) [2018] EWCA Crim 690, [2018] 3 WLUK 739, [2018] 2 Cr App R 22����������������������������������������������������������������������������������  17.18 R v Wilson [1997] QB 47, [1996] 3 WLR 125, [1996] 2 Cr App Rep 241 (Crim Div)����������������������������������������������������������������������������������������������   1.9, 2.25 R v Woollin (Stephen Leslie) [1999] 1 AC 82, [1998] 3 WLR 382, [1998] 4 All ER 103�����������������������������������������������������������������������������������������������  15.18 R (on the application of A (A Child)) v Secretary of State for Health [2017] UKSC 41, [2017] 1 WLR 2492, [2017] 4 All ER 353, [2017] Med LR 347���������������������������������������������������������������   7.28, 8.5, 8.14, 9.4 R (on the application of AC) v Berkshire PCT [2011] EWCA Civ 247, [2011] 119 BMLR 135�������������������������������������������������������������������������   7.32, 8.29 R (on the application of Administrator of the Estate of Lily Denison) v Bradford CCG [2014] EWHC 2552 (Admin), [2014] 7 WLUK 850����������������������������������������������������������������������������   8.21, 8.35 R (on the application of AM) v General Medical Council Divisional Court [2015] EWHC 2096 (Admin), [2015] Med LR 453, (2015) 146 BMLR 91����������������������������������������������������������������������������������   16.10, 16.21 R (on the application of Assisted Reproduction and Gynaecology Centre) v Human Fertilisation and Embryology Authority [2002] EWCA Civ 20, [2002] 1 WLUK 662, [2003] 1 FCR 266�����������������������������������������  11.1 R (on the application of Axon) v Secretary of State for Health & Family Planning Association [2006] EWHC 37 (Admin), [2006] QB 539, [2006] 2 WLR 1130��������������������������������������   4.5, 4.11, 4.12, 4.25, 9.21 R (on the application of B) v Haddock (Responsible Medical Officer) [2006] EWCA Civ 961, [2006] 7 WLUK 279, [2006] HRLR 40 ��������������  17.41 R (on the application of BA) v The Secretary of State for Health and Social Care v NHS Blood and Transplant [2018] EWCA Civ 2696, [2019] 1 WLR 2979, [2018] 12 WLUK 91����������������������������������������������������  7.8 R (on the application of Bashir) v Independent Adjudicator [2011] EWHC 1108 (Admin), [2011] 5 WLUK 724, [2011] HRLR 30����������������������������������������  14.1 R (on the application of Bayer Plc) v NHS Darlington Clinical Commissioning Group [2020] EWCA Civ 449, [2020] PTSR 1153, [2020] 3 WLUK 342������������������������������������������������������������������������������������������ 7.16 R (on the application of British Pregnancy Advisory Service) v Secretary of State for Health and Social Care [2020] EWCA Civ 355, [2020] 1 WLR 3240, [2020] 4 All ER 1082�������������������������������������������������������������  9.12 R (on the application of Burke) v General Medical Council & Disability Rights Commission [2006] QB 273, [2005] QB 424, [2005] EWCA Civ 1003������������������������������������������   2.26, 2.27, 3.29, 4.37, 6.4, 7.2, 7.4, 8.23, 12.24, 15.22, 18.24, 18.25

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Table of Cases R (on the application of C) v Secretary of State for Justice [2008] EWCA Civ 882, [2009] QB 657, [2009] 2 WLR 1039��������������������������������  5.18 R (on the application of Christian Concern) v Secretary of State for Health and Social Care [2020] EWCA Civ 1239, [2021] 1 WLR 885, [2020] 9 WLUK 294������������������������������������������������   9.9, 9.10, 9.18 R (on the application of Condliff) v North Staffordshire PCT [2011] EWCA Civ 910, [2012] 1 All ER 689, [2012] PTSR 460������������   1.8, 7.22, 8.26 R (on the application of Conway) v Secretary of State for Justice [2018] EWCA Civ 1431, [2020] QB 1, [2018] 3 WLR 925�����������������������  16.11 R (on the application of Cotter) v National Institute for Health and Care Excellence (“NICE”) [2020] EWCA Civ 1037, [2020] 8 WLUK 34, [2020] Med LR 572 ���������������������������������������������������������������  8.17 R (on the application of Counsel General for Wales) v Secretary of State for Business, Energy and Industrial Strategy [2022] EWCA Civ 181, [2022] 2 WLUK 197����������������������������������������������������������  6.42 R (on the application of CSM) v Secretary of State for the Home Department [2021] EWHC 2175 (Admin), [2021] 4 WLR 110, [2021] 7 WLUK 519 ������������������������������������������������������������������������������������  7.23 R (on the application of Cushnie) v Secretary of State for Health [2014] EWHC 3626, [201] PTSR 384, [2015] ACD 35�������������������������������������������  8.13 R (on the application of D) v Haringey LBC; R (on the application of T) v Haringey LBC [2005] EWHC 2235, (2006) 9 CCL Rep 58, [2005] All ER (D) 256 (Oct)�����������������������������������������������������������������������������   8.7, 8.21 R (on the application of Dyer) v Welsh Ministers [2015] EWHC 3712 (Admin), (2016) 19 CCL Rep 84, [2106] Med LR 185�����������������   7.22, 8.4, 8.5, 8.7, 8.35 R (on the application of Faizovas) v Secretary of State for Justice [2008] EWHC 1197 (Admin), (2008) 103 BMLR 28, [2009] Prison LR 107���������  5.21 R (on the application of Ferreira) v HM Senior Coroner for Inner South London [2015] EWHC 2990 (Admin), [2016] 1 WLR 2385, [2015] 10 WLUK 759�����������������������������������������������������������������������������������������������  5.67 R (on the application of Ferreira) v HM Senior Coroner for Inner South London [2017] EWCA Civ 31, [2018] QB 487, [2017] 3 WLR 382������������������������������������������������������������������������   5.67, 5.68, 5.69, 5.76, 5.120, 6.8, 15.57 R (on the application of Graham) & R (on the application of Allen) v Secretary of State for Justice [2007] EWHC 2940 (Admin), [2007] 11 WLUK 622, [2008] Prison LR 316����������������������������������������������������������  5.21 R (on the application of Grogan) v Bexley NHS Care Trust [2006] EWHC 44, [2006] BLGR 491, (2006) 9 CCL Rep 188��������������������������������  8.19 R (on the application of Hall) v University College London Hospitals NHS Foundation Trust [2013] EWHC 198 (Admin), [2013] 2 WLUK 270, [2013] ACD 55����������������������������������������������������������������������  7.24 R (on the application of IM) v Human Fertilisation and Embryology Authority [2016] EWCA Civ 611, [2017] 4 WLR 130, [2017] 3 All E. 77������������������������������������������������������������������������������������������   11.2, 11.21 R (on the application of JF) v NHS Sheffield Clinical Commissioning Group [2014] EWHC 1345 (Admin), [2014] 5 WLUK 54, [2014] ACD 121�������������������������������������������������������������������������������������   7.19, 8.7 R (on the application of JP) v Croydon CCG [2020] Med LR 426����������������������  8.21 R (on the application of Juttla) v Hertfordshire Valleys Clinical Commissioning Group [2018] EWHC 267 (Admin), [2018] 2 WLUK 468, (2018) 21 CCL Rep 325�������������������������������������������������������������������������������������������  8.21 R (on the application of Kenward) v DPP [2015] EWHC 3508 (Admin), [2016] 1 Cr App R 16, [2016] ACD 42�������������������������������������������������������  16.10 R (on the application of Laporte) v CC of Gloucestershire Constabulary [2006] UKHL 55, [2007] 2 AC 105, [2007] 2 WLR 46���������������������������������  6.3

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Table of Cases R (on the application of Maughan) v HM Senior Coroner for Oxfordshire [2020] UKSC 46, [2021] AC 454, [2020] 3 WLR 1298�������������������������������  17.6 R (on the application of Middleton) v HM Coroner for Western Somerset [2004] UKHL 10, [2004] 2 AC 182, [2004] 2 WLR 800���������������������������  17.25 R (on the application of MP) v Secretary of State for Health and Social Care [2018] EWHC 3392 (Admin), [2018] 12 WLUK 102, (2019) 167 BMLR 102���������������������������������������������������������������������������������������������  8.13 R (on the application of MP) v Secretary of State for Health and Social Care [2020] EWCA Civ 1634, [2021] 4 All ER 326, [2021] PTSR 1122����������������������������������������������������������������������������������������������������  8.13 R (on the application of Munjaz) v Mersey Care NHS Trust [2003] EWCA Civ 1036, [2004] QB 395, [2003] 3 WLR 1505 �����������������������������  16.3 R (on the application of Munjaz) v Mersey Care NHS Trust [2005] UKHL 58, [2006] 2 AC 148, [2005] 3 WLR 793�����������������������������������������  16.3 R (on the application of National Aids Trust) v NHS Commissioning Board (NHS England) [2016] EWHC 2005 (Admin), [2016] PTSR 1093, [2016] 8 WLUK 7�������������������������������������������������������������   8.3, 8.22 R (on the application of Newby) v Secretary of State for Justice [2019] EWHC 3118 (Admin), [2019] 11 WLUK 248��������������������������������������������  16.11 R (on the application of Nicklinson) v Ministry of Justice [2012] EWHC 2381 (Admin), [2012] 8 WLUK 204, [2012] 3 FCR 233��������������������������������������  4.33 R (on the application of Nicklinson) v Ministry of Justice [2014] UKSC 38, [2015] AC 657, [2014] 3 WLR 200�����������������������   4.33, 16.9, 16.10, 16.14, 16.21 R (on the application of Otley) v Barking & Dagenham PCT [2007] EWHC 1927, (2007) 10 CCL Rep 628, 98 BMLR 182��������������������������������  8.35 R (on the application of Pretty) v DPP [2001] UKHL 61, [2002] 1 AC 800, [2001] 3 WLR 1598������������������������������������������������������������   16.6, 16.8 R (on the application of PS) v Responsible Medical Officer [2006] EWCA Civ 28, [2006] 1 WLR 810 [2003] EWHC 2335 (Admin)����������������  3.5 R (on the application of Purdy) v DPP [2009] UKHL 45, [2010] 1 AC 345, [2009] LS Law Med 479������������������������������������������   16.6, 16.7, 16.8, 16.9, 16.10 R (on the application of Quintaville) v Secretary of State for Health [2003] UKHL 13, [2003] 2 AC 687, [2003] 2 WLR 692��������������������   11.1, 11.2 R (on the application of Rogers) v Swindon NHS Primary Care Trust [2006] EWCA Civ 392, [2006] 1 WLR 2649, [2006] 4 WLUK 313, (2006) 89 BMLR 211�������������������������������������������������������������   1.7, 1.8, 7.26, 8.30 R (on the application of Rose) v Thanet CCG [2014] EWHC 1182 (Admin), (2014) 138 BMLR 101, [2014] ACD 120������������������   7.36, 8.16, 8.17, 8.28, 8.29 R (on the application of Ross) v West Sussex PCT [2008] EWHC 2252, (2008) 11 CCLR Rep 787, 106 BMLR 1���������������������������������������������   8.31, 8.35 R (on the application of S (A Child)) v NHS England [2016] EWHC 1395 (Admin), [2016] 6 WLUK 355, (2016) 19 CCL Rep 336���������������������   1.8, 8.32 R (on the application of Sacker) v HM Coroner for West Yorkshire [2004] UKHL 11, [2004] 1 WLR 796, [2004] 2 All ER 487����������������������������������  17.25 R (on the application of SB) v NHS England [2017] EWHC 2000 (Admin), [2018] PTSR 576, [2017] 8 WLUK 95����������������   1.8, 8.18, 8.33, 8.34 R (on the application of Secretary of State for Home Department) v Mental Health Review Tribunal [2002] EWCA Civ 1868, [2002] 12 WLUK 551, [2003] MHLR 202��������������������������������������������������������������  5.33 R (on the application of SG) v Secretary of State for Work and Pensions [2016] 1 WLR 1449��������������������������������������������������������������������������������������  4.25 R (on the application of SHU) v Secretary of State for Health and Social Care [2019] EWHC 3569 (Admin), [2020] 4 WLR 124, [2019] 12 WLUK 427�����������������������������������������������������������������������������������������������  8.13

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Table of Cases R (on the application of Smeaton) v Secretary of State for Health [2002] 2 FLR 146, [2002] EWHC 610 (Admin), (No 2) [2002] EWHC 886 (Admin), [2002] All ER (D) 147 (May)��������������������������������������������������������  9.18 R (on the application of St Helens BC) v Manchester PCT [2008] EWCA Civ 931, [2009] PTSR 105, (2008) 11 CCL Rep 774�����������������������������������  8.21 R (on the application of Takoushis) v HM Coroner for Inner North London [2005] EWCA Civ 1440, [2006] 1 WLR 461, [2005] 11 WLUK 807��������  17.25 R (on the application of Tracey) v Cambridge University Hospitals NHS Foundation Trust [2014] EWCA Civ 822, [2015] QB 543, [2014] 3 WLR 1054��������������������������������������������������   6.10, 7.4, 7.21, 7.22, 18.19 R (on the application of Tracey) v Cambridge University Hospitals NHS Foundation Trust [2014] EWCA Civ 33, [2014] 1 WLUK 521����������  3.24 R (on the application of von Brandenburg) v East London and the City Mental Health NHS Trust [2003] UKHL 58, [2004] 2 AC 280, [2003] 3 WLR 1265������������������������������������������������������������������������������������  13.31 R (on the application of Whapples) v Birmingham CrossCity Clinical Commissioning Group [2015] EWCA Civ 435, [2015] PTSR 1398, [2015] 4 WLUK 633�������������������������������������������������������������������������������������  8.20 R (on the application of Wilkinson) v RMO Broadmoor Hospital [2001] EWCA Civ 1545, [2002] 1 WLR 419, [2001] 10 WLUK 580���������������������  5.16 R (on the application of YA) v Secretary of State for Health [2009] EWCA Civ 225, [2010] 1 WLR 279, [2010] 1 All ER 87��������������������������������   8.12, 8.14 R (A Minor) (Residence: Religion), Re [1992] 9 WLUK 37, [1993] 2 FLR 163, [1993] 2 FCR 525����������������������������������������������������������������������  14.1 R (Adult: Medical Treatment), Re [1996] 4 WLUK 302, [1996] 2 FLR 99, [1996] 3 FCR 473������������������������������������������������������������������������  4.13 RB (A Child), Re. See B (a child), Re RB (A Child), Re [2009] EWHC B26 (Fam)���������������������������������������������   4.37, 18.23 RK v BCC [2011] EWCA Civ 1305, [2011] 11 WLUK 880��������������������������������  5.70 Rabone v Pennine Care NHS Foundation Trust [2012] UKSC 2, [2012] 2 AC 72, [2012] 2 WLR 381��������������������������������������   7.27, 17.19, 17.28, 17.29, 17.30, 17.31 Rance v Mid-Downs Health Authority [1991] 1 QB 587, [1991] 2 WLR 159, [1991] 1 All ER 801�������������������������������������������������������������������  9.3 Raninen v Finland (20972/92) [1997] 12 WLUK 317, (1998) 26 EHRR 563, [1998] HRCD 170����������������������������������������������������������������  5.21 Raqeeb v Barts NHS Foundation Trust [2019] EWHC 2531 (Admin), [2020] 3 All ER 663, [2019] 10 WLUK 53�������������������������   4.26, 4.27, 4.30, 4.34, 4.39, 6.26, 14.23, 15.14, 15.75, 15.77, 15.78, 18.21 Rasmussen v Fleming (1987) 154 Ariz 207, P 2d 674������������������������������������������  15.3 Redcar and Cleveland BC v PR [2019] EWHC 2305 (Fam), [2019] 9 WLUK 37, [2020] 1 FLR 827��������������������������������������������������������������������  5.85 Rees v Darlington Memorial Hospital NHS Trust [2003] UKHL 52, [2004] 1 AC 309, [2003] 3 WLR 1091���������������������������������������������������������  10.3 Reeves v Commissioner of Police of the Metropolis [2000] 1 AC 360, [1999] 3 WLR 363, [1999] 3 All ER 897����������������������������   17.16, 17.17, 17.21, 17.23, 17.30, 17.36 Reid v Secretary of State for Scotland [1999] 2 AC 512, [1999] 2 WLR 28, [1999] 1 All ER 481 ����������������������������������������������������������������  13.17 Richardson v Howie [2004] EWCA Civ 1127, [2005] PIQR Q3, (2004) 101 (37) LSG 36��������������������������������������������������������������������������������  2.40 Riverside Mental Health NHS Trust v Fox. See Fox v Riverside Mental Health NHS Trust Rochdale Healthcare NHS Trust v C [1996] 7 WLUK 40, [1997] 1 FCR 274������������������������������������������������������������������������������������������   12.6, 17.12 Rodriguez v British Columbia (1994) 107 DLR (4th) 342�����������������������������������  16.5

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Table of Cases Rogers v Whitaker (1992) 109 ALR 625, (1993) 4 Med LR 79 (Australia)��������  1.20 Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust v SE [2018] EWCOP 45, [2018] 11 WLUK 851�������������������������������  15.68 Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust v TG [2019] EWCOP 21, [2019] 2 WLUK 747�����������   3.29, 15.13, 15.48, 15.54, 15.80, 15.86 Royal College of Nursing of the United Kingdom v Department of Health & Social Security [1981] AC 800, [1981] 2 WLR 279, [1981] 1 All ER 545���������������������������������������������������������������������������������   9.8, 9.9 S S & S, W v Official Solicitor (or W) [1972] AC 24, [1970] 3 WLR 366, [1970] 3 All ER 107��������������������������������������������������������������������������������������  2.27 S (A Minor) (Consent to Medical Treatment) [1994] 2 FLR 106�������������������������  4.15 S (A Minor) (refusal of medical treatment), Re [1995] 1 FCR 604��������������������  14.20 S (Adult Patient) (Inherent Jurisdiction: Family Life), Re [2002] EWHC 2278 (Fam), [2002] 11 WLUK 112, [2003] 1 FLR 292�������������������  4.13 S (adult patient: sterilisation: patient’s best interests), Re [2001] Fam 15, [2000] 3 WLR 1288, [2000] 5 WLUK 530, [2000] 2 FLR 389�������������������������������������������������������������   3.14, 10.8, 9.22, 10.12, 10.21 S (adult sterilisation), Re [1998] 1 WLUK 471, [1998] 1 FLR 944, [1999] 1 FCR 277�������������������������������������������������������������������   10.9, 10.11, 10.18 S (adult: refusal of treatment), Re [1993] Fam 123, [1993] 1 Med L Rev 92, (1992) 142 NLJ 1638��������������������������������������������������������������   12.1, 12.5 S (Children) (Specific Issue Order: Religion: Circumcision), Re [2004] EWHC 1282 (Fam), [2004] 3 WLUK 822, [2005] 1 FLR 236��������������������  4.18 S (hospital patient: court’s jurisdiction), Re [1996] Fam 1, [1995] 3 WLR 78, [1995] 3 All ER 290��������������������������������������������������������   3.32, 15.59 S (hospital patient: foreign curator), Re [1996] Fam 23, [1995] 3 WLR 596, [1995] 4 All ER 30 ������������������������������������������������������������������  3.27 S (protected persons), Re [2010] 1 WLR 1082, [2009] LS Law Medical 97, [2009] WTLR 315�����������������������������������������������������������   2.18, 3.13 S (Transfer of Residence), Re [2010] EWHC 192 (Fam), [2010] 1 WLUK 3, [2010] 1 FLR 1785��������������������������������������������������������������������  4.12 SA (vulnerable adult with capacity: marriage), Re [2005] EWHC 2942 (Fam), [2005] 12 WLUK 514, [2006] 1 FLR 867�����������   3.42, 6.13, 6.88, 17.35 SB (a patient: capacity to consent to termination), Re [2013] EWHC 1417 (COP), [2013] 3 FCR 384, (2013) 133 BMLR 110����������   2.14, 2.21, 3.18, 6.27, 6.44, 9.22, 9.23, 9.26, 9.27, 10.4, 12.13, 15.59 SD v Kensington and Chelsea RLBC [2021] EWCOP 14, [2021] 2 WLUK 305, [2021] COPLR 294���������������������������������������������������������������  3.39 SE (Serious Medical Treatment. See Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust v SE SG (a patient), Re [1990] 12 WLUK 47, [1991] 2 FLR 329, [1991] FCR 753����  9.22 SH v Austria (57813/00) [2011] 11 WLUK 104, [2012] 2 FCR 291, 31 BHRC 443������������������������������������������������������������������������������������������������  11.1 SLS [2002] EWHC 6 (Fam)���������������������������������������������������������������������������������  4.13 SP v BP, 2020 ABQB 331 (Court of Queen’s Bench of Alberta)�������������������������  4.13 SS (an adult: medical treatment, late termination), Re [2001] 9 WLUK 366, [2002] 1 FLR 445, [2002] 1 FCR 73������������������   9.22, 9.27, 9.30 SS v Richmond upon Thames LBC [2021] EWCOP 31, [2021] 4 WLUK 407, [2021] COPLR 612������������������������������������   3.36, 3.40, 5.1, 15.37 SS, Re [2018] EWCOP 40, [2018] 10 WLUK 488 ��������������������������������������������  15.13 St George’s Healthcare NHS Trust v P & Q [2015] EWCOP 42, [2015] COPLR 561, [2015] Med LR 463�����������������������   7.6, 8.23, 14.13, 15.33, 15.42, 15.54, 15.86

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Table of Cases St George’s Healthcare NHS Trust v S, R v Collins, ex p S (No 2) [1999] Fam 26, [1998] 3 WLR 936�������������������������   2.27, 2.30, 2.42, 4.33, 9.26, 12.11, 12.12, 12.13, 12.17, 17.12 St Helens BC v PE & Manchester PCT [2006] EWHC 3460 (Fam), [2007] 2 FLR 1115, (2008) 11 CCL Rep 7�������������������������������������������������  13.15 Salford City Council v GJ [2008] EWHC 1097 (Fam), [2008] 5 WLUK 406, [2008] 2 FLR 1295����������������������������������������������������������������������������������������  5.86 Salford Royal NHS Foundation Trust v P [2017] EWCOP 23, [2017] 10 WLUK 687, [2018] COPLR 120�����������������������������������������������������������  15.46 Sandwell & West Birmingham Hospitals NHS Trust v CD [2014] EWCOP 23, [2014] COPLR 650, (2014) 17 CCL Rep 395��������������   6.52, 14.33 Savage v South Essex Partnership NHS Foundation Trust [2008] UKHL 74, [2009] 1 AC 681, [2009] 2 WLR 115�������   7.27, 17.19, 17.26, 17.27, 17.28, 17.30, 17.31, 17.32, 17.35, 17.48 Secretary of State for Home Department v Robb [1995] Fam 127, [1995] 1 FLR 412, [1995] 1 All ER 677�����������������������   13.16, 15.58, 17.3, 17.7, 17.8, 17.9, 17.23 Secretary of State for Home Department v Skripal [2018] EWCOP 6, [2018] 3 WLUK 559, [2018] COPLR 220���������������������������������������������������  3.26 Secretary of State for Justice v Local Authority [2021] EWCA Civ 1527, [2021] 3 WLR 1425, [2021] 10 WLUK 297����������������������������������������������  10.10 Seney v Crooks (1998) 166 DLR (4th) 337 (Alta CA)����������������������������������   1.27, 7.3 Sensky, British Medical Journal (8 July 1995)����������������������������������������   17.41, 17.42 Sentges v Netherlands (2003) 7 CCL Rep 400, ECtHR���������������������������������������  7.22 Sessay v South London & Maudsley NHS Foundation Trust & the Comr of the Police of the Metropolis [2011] EWHC 2617 (QB), [2012] QB 760, [2012] 2 WLR 1071��������������������������������������������������������������   3.11, 5.60 Shaw v Kovac [2017] EWCA Civ 1028, [2017] 1 WLR 4773, [2018] 2 All ER 71, [2017] 7 WLUK 382, [2017] PIQR Q4, [2017] Med LR 403, (2018) 162 BMLR 99������������������������������������������������������   1.4, 1.19 Sheffield Teaching Hospitals NHS Foundation Trust v TH [2014] EWCOP 4, [2014] 5 WLUK 817�������������������������������������������������������������������������������������  10.8 Sherwood Forest Hospitals NHS Foundation Trust v H [2020] EWCOP 5, [2020] 1 WLUK 356, [2020] COPLR 324���������������������������������������������������  3.45 Sidaway v Board of Governors of the Bethlem Royal Hospital & the Maudsley Hospital [1985] AC 871, [1985] 2 WLR 480, [1985] All ER 643��������������������������������������������   1.10, 1.19, 1.20, 1.26, 6.21, 12.3 Simms v Simms [2002] EWHC 2734 (Fam), [2003] Fam 83, [2003] 2 WLR 1465��������������������������������������������������������������������������������������������������  3.28 Smiley v Home Office [2004] EWHC 240 (QB), [2004] 2 WLUK 242, [2004] Inquest LR 256��������������������������������������������������������������������������������  17.19 South West Hertfordshire HA v KB [1994] 1 WLUK 594, [1994] 2 FCR 1051��������������������������������������������������������������������   3.6, 13.21, 13.22, 13.31 Southend-on-Sea BC v Meyers [2019] EWHC 399 (Fam), [2019] 2 WLUK 406, [2019] COPLR 202���������������������������������������������������������������  5.85 Southwark LBC v NP [2019] EWCOP 48, [2019] 4 WLR 141, [2019] 10 WLUK 379�����������������������������������������������������������������������������������������������  3.45 Southwark LBC v P [2021] EWCOP 46, [2021] 6 WLUK 576���������������������������  6.48 Spencer v Hillingdon Hospital NHS Trust [2015] EWHC 1058 (QB), [2015] 4 WLUK 354����������������������������������������������������������������������������   1.23, 1.27 Staffordshire County Council v SRK [2016] EWCOP 27, [2016] Fam 419, [2016] 3 WLR 867������������������������������������������������������������������������  5.81 Stewart-Brady (Deceased), Re [2017] EWHC 2543 (Ch), [2018] Ch 543, [2018] 3 WLR 337������������������������������������������������������������������������  18.38 Storck v Germany (Application No 61603/00) (2005) 43 EHRR 6, [2005] MHLR 211����������������������������������������������������������������������������������������  5.32

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Table of Cases Strunk v Strunk 445 SW 2d 145 (1969)��������������������������������������������������������������  19.16 Swindon & Marlborough NHS Trust v S [1994] 12 WLUK 14, (1995) 3 Med L Rev 84��������������������������������������������������������������������������������������������  6.23 T T (a child), Re [2021] UKSC 35, [2021] 3 WLR 643, [2021] 4 All ER 665��������������������������������������������������������������������������������������   5.73, 13.13 T (a minor) (wardship: medical treatment), Re [1997] 1 WLR 242, [1997] 1 All ER 906, [1996] 10 WLUK 408 ����������������������������   4.21, 4.24, 4.29, 14.21, 15.72 T (adult: refusal of treatment), Re, [1993] Fam 95, [1992] 3 WLR 782, [1992] 4 All E.R. 649�������������������������������������������������   1.4, 1.31, 1.32, 2.16, 6.21, 12.10, 14.9, 14.10, 14.12, 14.14, 14.16 T (Minors) (Custody: Religious Upbringing), Re (1981) 2 FLR 239�������������������  14.1 T v T [1988] Fam 52, [1988] 2 WLR 189, [1988] 1 All ER 613������   10.14, 10.3, 12.1 T v United Kingdom; V v United Kingdom (Application No 24724/94) [2000] 2 All ER 1024 (Note), (1999) 30 EHRR 121, 7 BHRC 659�����������  15.21 TC, Re (a minor) High Court (NI) [1994] 2 Med LR 376������������������������������������  18.7 TT (Surrogacy) [2011] EWHC 33 (Fam), [2011] Fam Law 362������������������������  11.52 Tameside & Glossop Acute Services NHS Trust v CH [1996] 1 FCR 753, [1996] 1 FLR 762, (1996) 146 NLJ 1385�������������   9.28, 12.6, 13.17 Tasmin v Barts Health NHS Trust [2015] EWHC 3135 (QB), [2015] 10 WLUK 832�����������������������������������������������������������������������������������������������  1.23 Taylor v Shropshire Health Authority (No 1) [1998] 5 WLUK 127, [1998] Lloyd’s Rep Med 395������������������������������������������������������������������������  1.16 Thefaut v Johnston [2017] EWHC 497 (QB), [2017] 3 WLUK 328, [2017] Med LR 319�����������������������������������������������������������������������������   1.21, 1.23 Thor v Superior Court (1993) 5 Cal 4th 725, Supreme Court of California�������  17.22 Tower Hamlets LBC v A [2020] EWCOP 21, [2020] 4 WLUK 262, [2020] COPLR 609�����������������������������������������������������������������������������������������  2.8 Tower Hamlets v PB [2020] EWCOP 34, [2020] 4 WLR 94, [2020] 7 WLUK 27���������������������������������������������������������������������������������������������������  2.16 Trust A & B v H (an adult patient) [2006] EWHC 1230 (Fam), [2006] 5 WLUK 706, [2006] 2 FLR 958���������������������������������������������������������   5.16, 10.8 Trust A v X see D (a child) (deprivation of liberty: parental responsibility), Re Trust I v G 10929/84 [1988] ECHR 23�������������������������������������������������������������������  6.8 Tysiac v Poland (Application 5410/03) [2007] 1 FCR 666, (2007) 45 EHRR 42, 22 BHRC 155�������������������������������������������������������������������������  1.23 U UR v Derby City Council and NHS Derby and Derbyshire Clinical Commissioning Group [2021] EWCOP 10, [2021] 1 WLUK 399, [2021] COPLR 314 �����������������������������������������������������������������������������   3.16, 3.27 United Lincolnshire Hospitals NHS Trust v CD [2019] EWCOP 24, [2020] 4 WLR 95, [2020] 2 All ER 630������������������������������������   2.23, 4.13, 6.21, 12.9, 12.22, 12.23 United Lincolnshire Hospitals NHS Trust v N [2014] EWCOP 16, [2014] 7 WLUK 781, [2014] COPLR 660��������������������������������������   15.34, 15.69 United Lincolnshire Hospitals NHS Foundation Trust v Q [2020] EWCOP 27, [2020] 5 WLUK 300 �����������������������������������������������������������������  6.9 University College London Hospitals NHS Foundation Trust v KG [2018] EWCOP 29, [2018] 10 WLUK 468, [2019] COPLR 70�������������������  3.28 University Hospital Birmingham NHS Foundation Trust v AI [2021] EWCOP 37, [2021] 5 WLUK 416 �������������������������������������������������������������  15.37

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Table of Cases University Hospital Coventry and Warwickshire NHS Trust v K [2020] EWCOP 31, [2020] 6 WLUK 290, [2020] COPLR 839��������������������   10.9, 10.21 University Hospital Lewisham NHS Trust v Hamuth [2006] EWHC 1609 (Ch), [2006] 1 WLUK 405, [2006] Inquest LR 141�����������������������������������  18.39 University Hospitals Bristol NHS Foundation Trust v ED [2020] EWCOP 18, [2020] 3 WLUK 530�������������������������������������������������������������������������������������  3.30 University Hospitals Derby and Burton NHS Foundation Trust v J [2019] EWCOP 16, [2019] 5 WLUK 110, [2019] COPLR 317������������   3.36, 5.23, 10.7, 10.9, 10.20 University Hospitals Dorset NHS Foundation Trust v K [2021] EWCOP 40, [2021] 6 WLUK 221��������������������������������������������������������������������������   3.45, 12.20 University Hospitals Plymouth NHS Trust v B (Urgent Medical Treatment) [2019] EWHC 1670 (Fam), [2019] 6 WLUK 452����������������������������������������  6.74 University Hospitals Plymouth NHS Trust v RS [2020] EWCOP 70, [2020] 12 WLUK 466����������������������������������������������������������������������   14.13, 14.19 Uyan v Turkey (Application No 7496/03) (unreported, 8 January 2009)�������������  5.21 V V v Associated Newspapers Ltd; Re C (dec’d) [2016] EWCOP 21���������   6.40, 15.60, 17.35 V v United Kingdom see T v United Kingdom Van Colle v Chief Constable of Hertfordshire [2008] UKHL 50, [2009] 1 AC 225, [2008] 3 WLR 593���������������������������������������������������������������������  17.29 Villar v Sir Walter Gilbey [1907] AC 139, [1904-7] All ER Rep 779����������������  12.10 Vo v France (53924/00) [2004] 7 WLUK 232, [2004] 2 FCR 577, (2005) 40 EHRR 12 ����������������������������������������������������������������������������������������   9.26, 12.2 VS (Adult: Mental Disorder) [1995] 3 Med L Rev 292�������������������������������������  17.40 W W (a minor) (medical treatment: court’s jurisdiction), Re [1993] Fam 64, [1992] 3 WLR 758, [1992] 2 FCR 785, [1992] 4 All ER 627���������������������������������������������������������   4.1, 4.2, 4.3, 4.10, 4.11, 4.13, 4.15, 6.70, 6.74, 9.21, 13.3, 13.5, 13.6, 13.7, 14.31, 17.12 W (a minor) (wardship: jurisdiction), Re [1985] AC 791, [1985] 2 WLR 892, [1985] 2 All ER 301�����������������������������������������������������������������  8.24 W (Abduction: Child’s Objections), Re [2010] EWCA Civ 634��������������������������  4.12 W (adult: refusal of treatment), Re [2002] EWHC 901 (Fam), [2002] 4 WLUK 441, [2002] MHLR 411���������������������������������������������   2.16, 2.27, 17.16 W (An Adult: Mental Patient) (Sterilisation), Re [1993] 1 WLUK 443, [1993] 1 FLR 381, [1993] 2 FCR 187�����������������������������������������������   10.9, 10.11 W (medical treatment: anorexia), Re [2016] EWCOP 13, [2016] 2 WLUK 728, (2016) 151 BMLR 220��������������������������������������   3.33, 5.17, 13.25 W Healthcare NHS Trust v H 2004] EWCA Civ 1324, [2005] 1 WLR 834, [2004] 9 WLUK 223����������������������������������������������������������������  3.23 W NHS Trust v P [2014] EWHC 119 (COP), [2014] 1 WLUK 735�������   5.116, 5.119 W Primary Care Trust v TB [2009] EWHC 1737 (Fam), [2010] 1 WLR 2662, [2010] 2 All ER 331���������������������������������������������������������������  5.97 W v Meah [1986] 1 All ER 935, [1985] 12 WLUK 106, (1985) 136 NLJ 165����  2.40 WBC v Z [2016] EWCOP 4, [2016] 1 WLUK 248����������������������������������������������  2.17 Wakefield MDC v DN [2019] EWHC 2306 (Fam), [2019] 9 WLUK 38, [2019] COPLR 525���������������������������   2.23, 4.13, 5.79, 5.85, 12.22 Wandsworth LBC v M [2017] EWHC 2435 (Fam), [2017] 10 WLUK 34, [2018] 1 FLR 919������������������������������������������������   2.18, 2.21, 6.39 Ward (A Child), Re [2010] EWHC 16 (Fam), [2010] 1 WLUK 47, [2010] 1 FLR 1497����������������������������������������������������������������������������������������  4.41

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Table of Cases Ward of Court, Re [1995] 2 IRLM 901��������������������������������������������������������������  15.21 Warren (Elizabeth) v Care Fertility (Northampton) Ltd & Human Fertilisation & Embryology Authority [2014] EWHC 602 (Fam), [2015] Fam 1, [2014] 3 WLR 1310�������������������������������������������������   11.28, 11.30 Washington v Glucksberg 521 US 702 (1997) SC���������������������������������������������  17.31 Westminster City Council v C [2008] EWCA Civ 198, [2009] Fam 11, [2009] 2 WLR 185��������������������������������������������������������������������������������������  10.10 Wheatley v Lodge [1971] 1 WLR 29, [1971] 1 All ER 173, [1970] 10 WLUK 97 ������������������������������������������������������������������������������������������������  1.14 Whittington Hospital NHS Trust v XX [2020] UKSC 14, [2021] AC 275, [2020] 2 WLR 972����������������������������������������������������  11.7, 11.41, 11.48 Widmer v Switzerland (Application No 20527/92) (unreported)�����������������������  15.19 Wigan MBC v W [2021] EWHC 1982 (Fam), [2021] 7 WLUK 188, (2021) 24 CCL Rep 435�����������������������������������������������������������������������   4.12, 5.73 Williams v Williams (1882) 20 Ch D 659, [1882] 3 WLUK 26��������������   18.30, 18.36 Winspear v City Hospitals Sunderland NHS Foundation Trust [2015] EWHC 3250 (QB), [2016] QB 691, [2016] 2 WLR 1089����������   3.24, 6.10, 7.21 Wintwerp v Netherlands [1979] ECHR 4���������������������������������������������������������������  6.3 Wise v Kaye [1962] 1 QB 638, [1962] 2 WLR 96, [1962] 1 All ER 257�������������  4.38 Wolverhampton Metropolitan Borough Council v DB (a minor) [1996] 11 WLUK 324, [1997] 1 FLR 767, [1997] 1 FCR 618�������������   4.15, 13.7, 13.13 Wyatt (a child) (medical treatment: parents’ consent). See Portsmouth NHS Trust v Wyatt Wyatt v (1) Portsmouth Hospital NHS Trust (2) Charlotte Wyatt (by her Guardian CAFCASS) [2005] EWCA Civ 1181, [2005] 1 WLR 3995, [2005] 10 WLUK 271�������������������������������������������������   4.37, 18.21 Wyatt v Dr Curtis & Central Nottinghamshire Health Authority [2003] EWCA Civ 1779, [2003] 10 WLUK 830������������������������������������������������������  1.20 Wyatt, Re, sub nom Portsmouth NHS Trust v Derek Wyatt [2005] EWHC 2293 (Fam), [2005] 4 All ER 1325, [2006] 1 FLR 652����   1.6, 1.7, 4.20, 7.5, 8.26 Wye Valley NHS Trust v Mr B [2015] EWCOP 60, [2015] COPLR 843, (2015) 18 CCL Rep 733���������������������������������������������������   2.18, 3.20, 10.8, 14.13 X X (A Child acting by her Children’s Guardian) v Y [2021] EWHC 2139, [2021] 7 WLUK 477�������������������������������������������������������������������������������������  4.12 X (a child) (capacity to consent to termination), Re [2014] EWHC 1871 (Fam), (2014) 139 BMLR 143, [2014] Fam Law 1227�������������   9.21, 9.22, 9.24, 9.27, 9.33 X (A Child) (Medical Treatment), Re [2020] EWHC 3003 (Fam), [2020] 10 WLUK 468, [2021] 2 FLR 88�������������������������������������������������������   4.23, 14.32 X (A Child) (No 2), Re. See NHS Trust v X X (a child) (surrogacy: time limit) [2014] EWHC 3135 (Fam), [2015] Fam 186, [2015] 2 WLR 745�����������������������������������������������������������   11.30, 11.49 X (A Child) v Dartford and Gravesend NHS Trust [2015] EWCA Civ 96, [2015] 1 WLR 3647, [2015] 2 WLUK 559��������������������������������������������������  6.40 X (adult sterilisation), Re [1998] 6 WLUK 367, [1998] 2 FLR 1124, [1999] 3 FCR 426�������������������������������������������������������������������   10.9, 10.11, 10.18 X (Children) (Parental Order: Foreign Surrogacy), Re [2008] EWHC 3030 (Fam), [2009] Fam 71, [2009] 2 WLR 1274�������������������������  11.48 X (Court of Protection Practice), Re; Re X (deprivation of liberty) [2015] EWCA Civ 599, [2016] 1 WLR 227, [2016] 1 All ER 533��������������������������  6.27 X (Deprivation of Liberty), Re [2014] EWCOP 25, [2015] 1 WLR 2454, [2015] 2 All ER 1154������������������������������������������������������������������������������������  5.87 X (Deprivation of Liberty), Re [2014] EWCOP 37, [2015] 1 WLR 2454, [2015] 2 All ER 1165������������������������������������������������������������������������������������  5.87

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Table of Cases X and Y v UK (Application No 7229/75) [1977] ECHR 3�����������������������������������  11.1 X Primary Care Trust v XB [2012] EWHC 1390 (Fam), (2012) 127 BMLR 122, [2012] WTLR 1621��������������������������������������������������   2.38, 2.41 X v Austria & the European Court of Justice fnn 1 & 2 of Nys, (1999) 7(2) Med L Rev 7 209���������������������������������������������������   1.23, 4.11, 15.19 X v Finland (34806/04) [2012] 7 WLUK 45, [2012] MHLR 318������������������������  4.11 X v Germany (1984) 7 EHRR 152���������������������������������������������������������������������  17.24 X v Germany (Application No 8741/79) (unreported, 10 March 1981)�������������  18.37 X v Netherlands (A/91) [1985] 3 WLUK 230, (1986) 8 EHRR 235���������������������������������������������������������������������   1.24, 4.11, 4.25, 15.19 X v UK [1981] ECHR 6������������������������������������������������������������������������������������������  6.3 X v Y v St Batholemew’s Hospital Centre for Reproductive Medicine [2015] EWFC 13, [2016] PTSR 1, [2016] 1 FLR 544����������������������   11.2, 11.29, 11.30, 11.54 X, Re (The Times, 4 June 1987)������������������������������������������������������������������   9.22, 9.28 XX v Whittington Hospital NHS Trust [2018] EWCA Civ 2832, [2021] AC 275, [2019] 3 WLR 107������������������������������������������������������������  11.53 Y Y (mental patient: bone marrow donation), Re [1997] Fam 110, [1997] 2 WLR 556, [1996] 2 FLR 787, [1997] 2 FCR 172�����������������   3.26, 4.33, 19.16 Y v A Healthcare NHS Trust [2018] EWCOP 18, [2018] 8 WLUK 10, [2019] 1 FLR 679�����������������������������������������������������������������������������   11.22, 11.27 YF v Turkey (24209/94) [2003] 7 WLUK 616, (2004) 39 EHRR 34 �����������������  4.11 YY (Children) (Conduct of Local Authority), Re [2021] EWHC 749 (Fam), [2021] 3 WLUK 667�������������������������������������������������������   4.19, 4.34, 4.35 Yearworth v North Bristol NHS Trust [2009] EWCA Civ 37, [2010] QB 1, [2009] 3 WLR 118�����������������������������������������������������   11.25, 18.28, 18.32, 18.35, 19.10, 19.21 York City Council v C [2013] EWCA Civ 478, [2014] Fam 10, [2014] 2 WLR 1��������������������������������������������������������������������������������������������������������  10.7 Yousef v Netherlands (33711/96) (2003) EHRR 345 [2002] 3 FCR 577, [2003] 1 FLR 210������������������������������������������������������������������������������������������  4.25 Z Z (A Child) (Surrogacy Agreements: Child Arrangements Orders), Re [2016] EWFC 34, [2016] 6 WLUK 772, [2017] 1 FLR 946, [2016] Fam. Law 1100��������������������������������������������������������������������������������  11.52 Z (A Child) (Surrogate Father: Parental Order) (No 2), Re [2016] EWHC 1191 (Fam), [2017] Fam 25, [2016] 3 WLR 1369�������������������������  11.47 Z (A Child: Deprivation of Liberty: Transition Plan), Re [2020] EWHC 3038 (Fam), [2020] 11 WLUK 133, [2021] 2 FLR 94���������������������  5.71 Z (a minor) (identification: restrictions on publications), Re [1997] Fam 1, [1996] 2 WLR 88, [1995] 4 All ER 961������������������������������������   4.9, 4.24 Z (Local Authority: Duty), Re [2004] EWHC 2817 (Fam), [2005] 1 WLR 959, [2005] 3 All ER 280����������������������������������������������������   17.11, 17.12 Z (medical treatment: hysterectomy), Re [1999] 11 WLUK 289, [2000] 1 FLR 523, [2000] 1 FCR 274��������������������������������������   10.9, 7.12, 10.12 ZH (Tanzania) v Secretary of State for the Home Department [2011] UKSC 4, [2011] 2 AC 166, [2011] 2 WLR 148��������������������������������������������  4.25 Z v University Hospitals Plymouth NHS Trust [2020] EWCA Civ 1772, [2020] 12 WLUK 435���������������������������������������������������������������������������������  14.13 Z v University Hospitals Plymouth NHS Trust [2020] EWCOP 69, [2020] 12 WLUK 458���������������������������������������������������������������������������������  15.83 ZH v The Commissioner of Police for the Metropolis. See Commissioner for the Police of the Metropolis v ZH

lxvi

Table of European Legislation [References are to paragraph numbers]

Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine (Oviedo, 4 Aril 1997) art 5�������������������������������������������  1.24 European Convention on Human Rights (Rome, 4 November 1950)������������������   6.6, 7.20, 13.29, 16.5, 17.21 art 2���������������   4.11, 4.35, 5.18, 5.57, 7.25, 7.26, 7.27, 7.28, 9.17, 9.26, 12.2, 13.25, 13.31, 14.3, 15.5, 15.17, 15.18, 15.19, 15.20, 15.21, 15.23, 15.24, 15.25, 15.26, 15.28, 15.56, 16.6, 16.8, 17.19, 17.24, 17.25, 17.26, 17.28, 17.31, 17.35 art 2(1)����������������   7.26, 15.18, 15.19, 15.20, 17.31 art 3�����������������   3.8, 4.11, 4.13, 5.16, 5.18, 5.19, 5.20, 5.21, 5.22, 5.64, 7.23, 7.24, 7.25, 10.22, 13.19, 13.25, 15.21, 15.28, 17.24, 18.2 art 5���������������   3.34, 4.11, 4.13, 4.45, 5.15, 5.24, 5.26, 5.33, 5.46, 5.57, 5.64, 5.67, 5.68, 5.70, 5.71, 5.72, 5.80, 5.85, 5.86, 5.87, 5.116, 5.120, 6.3, 6.17, 6.27, 12.18, 13.11, 13.12, 16.8 art 5(1)��������������������   5.25, 5.30, 5.42, 5.60, 5.68, 6.8 art 5(1)(e)���������������������������   5.68, 6.8 art 5(4)�������������������   5.25, 5.87, 13.10 art 6����������������   3.45, 6.27, 6.60, 6.82

European Convention on Human Rights (Rome, 4 November 1950) – contd art 8��������   1.34, 2.40, 3.7, 3.21, 3.34, 3.36, 3.37, 3.43, 3.45, 4.11, 4.12, 4.13, 4.14, 4.17, 4.19, 4.23, 4.25, 4.26, 4.44, 5.15, 5.22, 5.23, 5.64, 5.68, 6.7, 6.27, 6.60, 6.82, 7.4, 7.21, 7.22, 7.27, 7.28, 8.13, 9.22, 10.1, 10.8, 10.19, 10.22, 11.1, 11.21, 11.25, 11.28, 11.30, 11.49, 11.50, 11.54, 12.19, 13.23, 13.25, 14.2, 14.20, 14.28, 14.29, 14.30, 15.19, 15.21, 15.22, 15.25, 15.28, 15.74, 16.5, 16.6, 16.7, 16.8, 16.9, 16.11, 16.19, 16.21, 17.33, 18.2, 18.19, 18.37, 19.2 art 8(1)���   1.24, 4.11, 9.22, 11.1, 16.6 art 8(2)�����������   3.24, 4.11, 4.25, 5.22, 7.22, 9.22, 10.8, 11.1, 16.6, 16.8 art 9������   3.21, 4.11, 4.13, 4.30, 14.1, 14.2, 14.3, 14.18, 14.20, 14.22, 14.23, 14.28, 14.29, 14.30, 15.14 art 10��������������������������������   6.82, 16.5 art 12�����������������������   10.7, 10.8, 11.1 art 14�������������   4.13, 4.26, 7.26, 7.28, 8.13, 9.4, 11.50, 15.74 European Union Charter of Fundamental Rights (7 December 2000) art 10�����������������������������������������  14.2 Treaty for the Functioning of the European Union (25 March 1957) art 56�����������������������������������������  4.30 United Nations Convention on the Rights of the Child (New York, 20 November 1989)������   4.45, 7.21, 10.22, 15.74

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Table of European Legislation United Nations Convention on the Rights of the Child (New York, 20 November 1989) – contd art 3(1)������������������������������   4.11, 4.25 art 5�������������������������������������������  4.17 art 7�������������������������������������������  4.12 art 12��������������������������������   4.11, 4.12 art 12(1)����������������������������   4.12, 4.23 art 14�����������������������������������������  4.12 art 14(1)�������������������������������������  4.12 art 14(2)���������������������������������������  4.6 art 16�����������������������������������������  4.12 United Nations Convention on the Rights of Persons with Disabilities (2006) art 4�������������������������������������������  14.2 Universal Declaration of Human Rights (Paris, 10 December 1948) art 18�����������������������������������������  14.2 Directive 2004/23/EC on setting standards of quality and safety for the donation, procurement, testing, processing, preservation, storage and distribution of human tissues and cells [2004] OJ L102/48����������������  11.5

Directive 2006/17/EC implementing Directive 2004/23/EC as regards certain technical requirements for the donation, procurement and testing of human tissues and cells [2006] OJ L38/40������������������  11.5 Directive 2006/86/EC as regards traceability requirements, notification of serious adverse reactions and events and certain technical requirements for the coding, processing, preservation, storage and distribution of human tissues and cells [2006] OJ L294/32����������������  11.5 Directive 2015/566 as regards the procedures for verifying the equivalent standards of quality and safety of imported tissues and cells [2015] OJ L93/56������������������������������  11.5

lxviii

Table of International Legislation [References are to paragraph numbers]

AUSTRALIA AUSTRALIAN CAPITAL TERRITORY Transplantation and Anatomy Act 1979 s 45��������������������������������������������  18.4 NEW SOUTH WALES Human Tissue Act 1983����������������  18.4 NORTHERN TERRITORY Human Tissue Transplant Act 1979 s 23��������������������������������������������  18.4 QUEENSLAND Transplantation and Anatomy Act 1979 s 45��������������������������������������������  18.4

SOUTH AUSTRALIA Death (Definition) Act 1983 s 3����������������������������������������������  18.4 TASMANIA Human Tissue Act 1985 s 27A�����������������������������������������  18.4 VICTORIA Human Tissue Act 1982 s 41��������������������������������������������  18.4 CANADA Criminal Code�������������������������������  16.5 UNITED STATES Alabama Code § 13A-13-6������������������������������  14.21 Uniform Determination of Death Act 1981��������������������������������  18.3

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Part 1

General Principles

2

Chapter 1

Consent – General

A

B

C

D E F G

Framework 1.1 Introduction 1.1 Proposal to treat  1.3 Formulation of proposal  1.3 Risks of treatment  1.4 Considering alternative forms of treatment  1.5 Compelling a doctor to treat  1.6 Irrational decisions by care providers to refuse treatment  1.7 Resources 1.8 Treatment demanded by the patient  1.9 Communication of the proposal  1.10 Consent – state of mind  1.13 Intention 1.13 Comprehension 1.14 Communication of consent  1.15 Written consent  1.16 Oral consent  1.17 Conduct 1.18 Information about risks  1.19 No doctrine of informed consent in relation to trespass to the person  1.19 Duty of care − common law position  1.20 The test of materiality  1.21 Duty to respond to specific needs of patient  1.22 Application of Montgomery 1.23 Article 8  1.24 Delegation 1.25 Duty to answer questions  1.26 Information about alternative forms of treatment  1.27 Known comparative outcomes  1.28 Vitiating factors  1.30 Fraud 1.31 Duress and undue influence  1.32 Capacity 1.33 Scope of authority  1.34 Duration of authority  1.35 Withdrawal of authority  1.37 Conclusion 1.38 3

1.1  Consent – General

A FRAMEWORK Introduction 1.1 The legality of all medical treatment is founded on the existence of consent or some other lawful authority. The general principle is that no form of medical treatment can be given without either the consent of the capable patient, or, if the patient is under 16 or an incapable adult, either the consent of someone with the authority to give consent on the patient’s behalf or the authority of the court.1 The very structure of the last sentence reflects the convoluted nature of the law in this area, which is a result of its piecemeal, largely accidental development. 1 If the patient is a child, the court can consent on their behalf; if the patient is an incapacitous adult, the court can give consent under ss 16 and 17 of the Mental Capacity Act 2005 (‘MCA’). See Appendix 1: Mental Capacity Act 2005.

1.2 This chapter addresses those cases in which consent is or should be obtained. Although the provision of medical treatment and consent to it may form a legal contract, it need not do so. The process, however, is similar: there must be a proposal to treat (or ‘offer’ in contractual parlance); a communication of that proposal or offer; understanding of what is proposed; consent to or acceptance of it; and communication of the consent or acceptance by a patient possessing the relevant capacity. The ingredients necessary for a contract which will often be missing in the context of the National Health Service will be consideration for the offer of treatment, and intention to form legal relations in the contractual sense.

Proposal to treat Formulation of proposal 1.3 It is axiomatic that no treatment will be undertaken unless a medical practitioner proposes to provide it. This is not the place to examine the medical thought process that leads to a decision to offer treatment, but it will usually be necessary for the doctor to have examined the patient, undertaken any preliminary investigations and enquiries, including the taking of a history, and – on the basis of the material so obtained – come to a diagnosis, provisional or firm. From this they1 will deduce the appropriate form of treatment to offer. 1 Throughout this text, the pronouns ‘they’/‘them’ are used generically for ‘he’/’she’ and ‘him’/her’.

Risks of treatment 1.4

A doctor owes a duty of care:

‘… to take reasonable care to ensure that a patient is aware of material risks of injury that are inherent in treatment. This can be understood, within the traditional framework of negligence, as a duty of care to avoid exposing a person to a risk of injury which she would otherwise have avoided, but it is also the counterpart of the patient’s entitlement to decide whether or not to incur that risk.’1 4

Consent – General 1.5 However, a failure to give such a warning does not render the treatment unlawful in the sense of being an assault, so long as the patient is given a general understanding of the nature of the treatment being proposed.2 Any action would normally be in negligence,3 although where no consent has been elicited at all, ‘treating [a capacitous adult] without his consent or despite a refusal of consent will constitute the civil wrong of trespass to the person and may constitute a crime’.4 The position is of course different for a person who lacks capacity in relation to their treatment. Consent is not valid if it is obtained from a person who is incapacitous.5 Further, a doctor’s duty of care in negligence to inform is subject to the ‘therapeutic exception’ discussed below.6 1 Montgomery v Lanarkshire Health Board [2015] UKSC 11 at [82]. Also, see para 1.20 below. 2 Chatterton v Gerson [1981] QB 432; Freeman v Home Office (No 2) [1984] QB 524. In Chatterton, the patient was treated to block a sensory nerve following painful post-operative scarring. She was not informed of the risk of losing sensation in her lower limbs, which in fact occurred. Her claim under the tort of battery due to lack of disclosure of risks failed. It was held that her consent was in fact valid as she had at least consented to the broad nature of the procedure, and to succeed in battery the consent needed to effectively be ‘unreal’. See also Shaw (Personal Representative of the Estate of Ewan Deceased)) v Kovac [2017] EWCA Civ 1028 where Davis LJ stated at [68]: ‘it has long been the law that where a doctor has failed to provide proper information as to risk prior to a medical procedure and that failure leads to consent being given which otherwise would have been withheld, and loss results, then that is actionable in negligence. The consent so given, is not regarded as a nullity … in the usual case the claim is not to be pleaded as one of trespass to the person (in the absence of fraud or bad faith)’. 3 See para 1.20 below: Duty of care – common law position. 4 Re T (adult: refusal of treatment) [1993] Fam 95 at 102 per Lord Donaldson, as also considered in Connolly v Croydon Health Services NHS Trust [2015] EWHC 1339 (QB). 5 See Chapter 2: Consent & Capacity – Adults, para 2.3 on the capacity of a patient to understand the information communicated to them; and Chapter 3: Deciding for Others – Adults. 6 See para 1.20 below: Duty of care – common law position.

Considering alternative forms of treatment 1.5 If there are alternative forms of treatment available, the doctor will need to consider which of those is in the best interests of the patient. Sometimes there is little to choose between them in terms of outcome, in which case they will doubtless decide to offer the treatment with which they are most familiar or which is most readily available. The doctor, however, is under a duty to take: ‘reasonable care to ensure that the patient is aware of … any reasonable alternative or variant treatments.’1 The latest GMC guidance, which replaces and expands upon previous guidance, mirrors this approach. It states simply that: ‘Doctors must try to find out what matters to patients so they can share relevant information about the benefits and harms of proposed options and reasonable alternatives, including the option to take no action.’2 1 Montgomery v Lanarkshire Health Board [2015] UKSC 11 at para 87. Again, this will be subject to the very limited ‘therapeutic exception’ discussed at para 1.20. 2 GMC, Decision making and consent; see bit.ly/GMC-consent-2020 (9 November 2020) principle 4, p 7, and see para 1.26 below.

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1.6  Consent – General

Compelling a doctor to treat 1.6 In general, a doctor cannot be compelled to provide treatment which they do not consider to be in the patient’s best interests.1 This is so even if other practitioners consider the treatment desirable. This sensible rule is necessary: it would clearly be highly undesirable for both doctor and patient if an unwilling doctor could be forced to provide treatment the doctor believed to be harmful or the effectiveness of which the doctor doubted. The rule is consistent with the contractual rule that specific performance will not be granted to enforce the provision of personal services.2 However, doctors do need to be aware of the requirement to refer a patient for a second opinion if it is obvious that the patient wishes to receive treatment which is known to be available in other responsible and competent hands. A doctor is not entitled to restrict a patient’s choice of treatment to satisfy their own conscience and might be found liable in an action for negligence if their advice did not conform to responsible and accepted medical practice or was not sustainable on rigorous logical scrutiny.3 1

Re J (A Minor) (Child in Care: Medical Treatment) [1993] Fam 15; Portsmouth NHS Trust v W [2005] EWHC 2293. See also GMC, ‘Decision making and consent’ see bit.ly/GMCconsent-2020, para 49: ‘If a patient asks for treatment or care that you don’t think would be in their clinical interests, you should explore their reasons for requesting it, their understanding of what it would involve, and their expectations about the likely outcome. This discussion will help you take account of factors that are significant to the patient and assess whether providing the treatment or care could serve the patient’s needs. If after discussion you still consider that the treatment or care would not serve the patient’s needs, then you should not provide it. But you should explain your reasons to the patient and explore other options that might be available, including their right to seek a second opinion.‘ But note para 1.7 below. 2 See, for example, the detailed discussion by the Supreme Court in Geys v Société Générale, London Branch [2012] UKSC 63, [2013] 1 AC 523. 3 The duties of a doctor as defined by the GMC include an obligation to make sure that personal beliefs do not prejudice patients’ care: GMC, ‘Decision making and consent’ (N1 above) paras 48 and 49. For a discussion about using a refusal of consent as a back-door method of securing treatment which a doctor does not wish to provide see Chapter 2: Consent – Adults, para 2.27. And for a discussion about the position of a doctor who is in principle against withdrawal of feeding/hydration for a patient in a permanent vegetative state see Chapter 15: Withdrawal and Withholding of Treatment, para 15.70.

Irrational decisions by care providers to refuse treatment 1.7 There is no English authority on whether an individual doctor can be required to provide treatment which they refuse to give on irrational or discriminatory grounds. Two principles would appear to clash: the rule against forcing someone to provide personal services1 and the public law principle requiring rational decisions to be made by those exercising public administrative functions.2 The courts however have jurisdiction to compel a health authority to reconsider whether they should provide treatment or reformulate their policies where an irrational or, in some circumstances, unfair decision to refuse treatment has been made.3 If such a refusal arose because of an irrational decision of the only doctor available to provide treatment, then it is likely that the courts would act to ensure that treatment was provided, if this was practicable.4 1 2

1.6 above; Re J (A Minor) (Child in Care: Medical Treatment) [1993] Fam 15; Portsmouth NHS Trust v W [2005] EWHC 2293. Associated Provincial Picture Houses Ltd v Wednesbury Corpn [1948] 1 KB 223; R v North and East Devon Health Authority, ex p Coughlan [1999] Lloyd’s Rep Med 306. para

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Consent – General 1.9 3

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Ex p Coughlan (ibid); R v North West Lancashire HA, ex p A [2000] 1 WLR 977, CA (health authority had acted unlawfully in the rigid operation of a policy which resulted in a refusal to provide gender reassignment surgery under the National Health Service Act 1977). See also R v Swindon NHS Primary Care Trust [2006] 1 WLR 2649, CA (a primary care trust’s policy was irrational as it could not be rationally explained). For a further detailed discussion see Chapter 7: Access to Healthcare – Choice and Chapter 8: Access to Healthcare –Funding.

Resources 1.8 Problems may arise where the form of treatment the doctor would like to offer is unavailable in their hospital or practice because of a lack of resources over which they have no control. Generally, health authorities are at liberty to allocate resources in the best way they see fit in the fulfilment of their statutory duties.1 However, they must act in accordance with policies that are clear in their material parts.2 Even where they do, health authorities’ decisions with respect to allocation of resources may be challenged in the courts3 and in exceptional circumstances the courts can order that treatment should be funded.4 An individual doctor is unlikely to be criticised where they are not given the relevant resources, but in such circumstances they will have to consider whether the patient should be referred to a centre which has them. 1

R v Secretary of State for Social Services, ex p Hincks (1980) 1 BMLR 93; R v Cambridge Health Authority, ex p B [1995] 1 WLR 898. 2 R (SB) v NHS England [2017] EWHC 2000, [2018] PTSR 576 (a decision of NHS England to refuse funding for a particular drug was irrational as the policy did not clearly define ‘clinical effectiveness’). 3 For example, R v North Derbyshire Health Authority, ex p Fisher [1997] 8 Med LR 327, (1997) 38 BMLR 76, CA per Dyson J (a health authority’s refusal to fund beta interferon treatment on the ground of insufficient resources, was successfully challenged on the ground that health authority policy failed to pay sufficient heed to an NHS Executive circular asking Health Authorities to facilitate introduction of the drug); R (Rogers) v Swindon NHS Primary Care Trust [2006] 1 WLR 2649, (2006) 89 BMLR 211 (a primary care trust’s policy of refusing funding for treatment with the then unlicensed drug Herceptin, save where there were exceptional personal or clinical circumstances, was successfully challenged on the ground that it was irrational as it was not possible to envisage what those circumstances would be); cf R v Cambridge Health Authority, ex p B [1995] 1 WLR 898, [1995] 2 All ER 129 (the appeal of parents of a ten-year-old child, against a decision not to fund a third round of leukaemia treatment, was unsuccessful, as the court considered difficult judgments on how best to maximise a limited budget were for the provider not the courts); and R (on the application of Condliff) v North Staffordshire PCT [2011] EWCA Civ 910, [2012] 1 All ER 689 (where the court similarly held that the primary care trust’s decision not to fund gastric bypass surgery for a man with a BMI in excess of 40 with significant co-morbidities was legitimate, given they were allocating scarce resources according to their assessment of medical need.) For a further detailed discussion see Chapter 7: Access to Healthcare – Choice and Chapter 8: Access to Healthcare –Funding. 4 S (A Child) v NHS England [2016] EWHC 1395 (the court held NHS England had applied a too restrictive approach to the exceptionality test in refusing an individual funding request for a 17-year-old girl suffering from narcolepsy and cataplexy. NHS England was ordered to fund the drug sought for a three-month trial period under the control of the lead consultant). For a further detailed discussion see Chapter 7: Access to Healthcare – Choice and Chapter 8: Access to Healthcare –Funding.

Treatment demanded by the patient 1.9 There are limits to the extent to which consent is capable of providing a defence in criminal law to offences of assault.1 It is generally accepted that ‘reasonable surgical interference’ is lawful and would not render the surgeon open to criminal prosecution. This so-called ‘medical exception’ has been 7

1.9  Consent – General justified on the ground of the public interest2 or for therapeutic purposes.3 But what about surgery which has no therapeutic purpose, such as surgery solely for cosmetic purposes, which cannot be justified on the basis of public interest but, it seems, has always been accepted as lawful where a patient with capacity gives consent? And what is to be regarded as ‘reasonable surgical interference’? Gender reassignment surgery, which involves the removal of healthy body parts and is irreversible, has always been regarded as lawful.4 In contrast, there is much controversy over the position of patients who suffer from body dysmorphic disorder5 and who wish the amputation of a healthy limb.6 There is debate over the categorisation of body dysmorphic disorder and its appropriate treatment. It is suggested it is at least arguable that, given the criminal law does not interfere with cosmetic surgery, it should not do so in cases where the amputation of a healthy limb would lead to the alleviation of a patient’s suffering and reduce the risk of the patient self-harming.7 Outside ‘standard cosmetic surgery’, cases in which removal of healthy parts of the body are proposed will always have to be carefully assessed: we would suggest they would comprise the rare cases where a patient with capacity has given fully informed consent and where all other avenues for treatment have proved unsuccessful. In practice, a surgeon contemplating such surgery should take specific legal advice and in any event may run into the practical obstacle that hospitals may refuse to provide the facilities for such operations to be carried out. In contrast, unregulated body modification will usually be found unlawful even with ‘patient’ consent. In March 2019, so-called ‘Dr Evil’, a tattooist who had a body modification business and carried out unregulated surgical procedures, pleaded guilty to three offences: removal of an ear, splitting of a tongue with a scalpel and removal of a nipple.8 Each of the customers had signed a consent form and all the procedures were carried out without anaesthetic. The tattooist brought an interlocutory appeal against the ruling that the customer’s consent provided no defence to the charges.9 The Court of Appeal held that the fact that members of the public consented to the procedures did not amount to a defence.10 1

R v Brown [1994] 1 AC 212; R v Wilson [1996] 3 WLR 125; and R v Emmett, Times, October 15, 1999. See also Chapter 2: Consent – Adults, para 2.10. 2 Attorney General’s Reference (No 6 of 1980) [1981] All ER 715 per Lord Lane CJ at 1059. 3 Law Commission, Consent and Offences against the Person: A Consultation Paper, Consultation Paper No 134 (HMSO, 1994), para 2.4. 4 For example, Cossey v UK (1990) 13 EHRR 622; Goodwin v UK (2002) EHRR 18; Bellinger v Bellinger [2003] 2 AC 467; and the Gender Recognition Act 2004. 5 Diagnostic and Statistical Manual of Mental Disorders, 5th edition, published on 18 May 2013 (updates to the DSM- 5: https://bit.ly/DSM5_update). 6 Elliott, Body dysmorphic disorder, radical surgery and the limits of consent (2009) 17 Med L Rev 1. 7 We are aware of no prosecutions having been brought in the UK against surgeons who have undertaken such surgery. 8 See The Guardian, 21 May 2019: see bit.ly/Guardian-210519-DrEvil. 9 R v McCarthy (Brendan Patrick) [2020] 4 WLR 45, [2020] 2 Cr App R (S) 5. 10 Ibid at paras 46–50.

Communication of the proposal 1.10 No consent can be obtained without the nature and effect of the proposed treatment being communicated to the patient or other person giving proper consent.1 The treatment need not be described in complete detail,2 but 8

Consent – General 1.11 sufficient detail must be stated to enable the person consenting to understand in broad terms what is to be done.3 There is, however, a difference between the nature of the consent required to avoid a claim for trespass to the person (that is, the tort of battery),4 and the consent required to avoid a claim in negligence. To avoid a claim in trespass, a doctor need only obtain the patient’s consent to the broad nature of the procedure, and would only be rendered liable, for example, where the procedure consented to was completely different to that undertaken.5 By contrast, Montgomery6 now makes it clear that for consent to be provided in fulfilment of a doctor’s duty of care in negligence, all material risks involved in recommended treatment, and all reasonable alternative or variant treatments, should also be discussed with the patient.7 1 See Chapter 2: Consent – Adults, para 2.10ff: on the capacity of a patient to understand the information communicated to them. 2 See Negus v Guy’s and St Thomas’ NHS Foundation Trust [2021] EWHC 643 (QB) (duty does not necessarily include discussion of technical matters, paras 74–78). 3 Sidaway v Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital [1985] AC 871. (See also Pepper v Royal Free London NHS Foundation Trust [2020] EWHC 310 (QC) at para 144 where it was noted that the law does not require a court to micromanage the words used by a doctor to a patient provided that they do not involve putting a patient under pressure to accept a certain treatment.) 4 Where the claimant does not need to prove damage, only that they were touched without consent; see also n2 to para 1.4 above, which discusses the case of Chatterton v Gerson [1981] QB 432, [1980] 3 WLR 1003. 5 The example provided by the court in Chatterton was where a child was admitted into hospital for a tonsillectomy but erroneously received a circumcision instead. 6 Montgomery v Lanarkshire Health Board [2015] UKSC 11 at para 87. 7 Bayley v George Eliot Hospital NHS Trust [2017] EWHC 3398 (QB) (identifying what was a reasonable alternative treatment had to be a decision which was sensitive to the particular facts and circumstances and the state of medical knowledge at the time, para 63).

1.11 The communication may be oral or in writing, or a mixture of the two, with leaflets1 often supplementing oral advice. Where a surgical or other invasive procedure is contemplated it is usual and prudent practice for a consent form to be used. The standard NHS form2 is a useful tool to remind healthcare staff to obtain and record consent, and can also provide subsequent evidence that some discussion of (and at least apparent consent to) the proposed procedure did take place. Care should be taken to ensure that the treatment is accurately described on the form.3 However, such forms are not an adequate substitute for a thorough discussion with the patient about what is proposed. Whether or not a form is used, a note should also be made in the patient’s medical records of what the patient was told. It is no longer enough for the doctor to simply enter ‘consent ’ in the notes and expect this to be accepted as proof that an adequate description of the procedure was given to the patient before they gave consent. Since Montgomery,4 professional guidance now often advises on the explicit recording of consent.5 1 Connolly v Croydon Health Services NHS Trust [2015] EWHC 1339 (QB). 2 See Appendix 2: Consent form 1 (sample) for a recent version of the standard form likely to be the most commonly used; that relating to adults who have capacity to consent. 3 However, note Abbas v Kenney [1996] 7 Med LR 47 per Gage J who held that, on the facts, a patient had consented to a more extensive operation being performed if the need arose, despite it not being referred to expressly in the consent form. 4 Montgomery v Lanarkshire Health Board [2015] UKSC 11. 5 As per the NMC’s guidance: ‘make sure that you get properly informed consent and document it before carrying out any action’; see para 4.2 of The Code, Professional standards of practice and behaviour for nurses and midwives, National Midwifery Council. Effective from 31 March 2015 (updated 10 October 2018), see bit.ly/NMC-Code-2018.

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1.12  Consent – General 1.12 It should be noted that the duty to communicate a proposal to provide treatment applies to all forms of treatment, not only operations and major medical treatment. Hence, even a patient’s pulse should not be taken before the intention to do so has been communicated, nor without the patient’s consent. The more radical or serious the treatment, the greater the detail required in obtaining consent.

Consent – state of mind Intention 1.13 For treatment to be provided lawfully to a capacitous adult patient, they must consent, that is, agree to and acquiesce in the treatment being proposed. This requires an intention on the part of the patient to consent. However, intention may be inferred from words or conduct which the reasonable observer would construe as manifesting intentional consent.

Comprehension 1.14 Does the requirement that the patient be given sufficient information to enable them to understand the nature and effect of the proposed treatment import a requirement that they must actually understand everything they have been told? We think not. Ability to understand is required,1 but to require proof of actual understanding of everything said is to create a dangerously high hurdle to overcome before necessary treatment is given.2 Hence, so long as the patient realises that medical treatment is proposed and will be as described by the doctor, and they agree to submit to this, we consider that establishes sufficient intent to consent in the context of trespass to the person. This is supported by the consideration of the (more stringent) requirements of the tort of negligence. What Montgomery requires in order for a doctor to avoid breaching their duty of care in negligence, is that the doctor takes reasonable care to ensure ‘the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative or variant treatments’. There is no requirement there to ensure that the patient in fact understands. Pre-Montgomery case law also supports this approach.3 In Al-Hamwi4 the patient had an interpreter present but still misunderstood a consultant’s advice. The court noted that any warning or advice (as to the risks of amniocentesis in that case) should be adequate in scope, content and presentation, with some steps taken to ensure it was understood,5 but still held the counselling provided was sufficient given the patient had also been provided with written information. The fact that a patient is unable to understand or chooses not to understand the full technical detail of what is being proposed should not invalidate consent, provided the patient has the requisite capacity. 1 See Chapter 2: Consent & Capacity – Adults, para 2.09. 2 In the context of information to be given by police officers on arrest, the Divisional Court in Wheatley v Lodge [1971] 1 WLR 29 determined that what is required is not that the person being arrested actually comprehends what is being said but merely that the officer has acted reasonably on the basis of the information they knew about the person being arrested. (The officer – reasonably – had failed to realise that the person being arrested was in fact deaf.)

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Consent – General 1.17 3 See the cases of Al Hamwi v Johnston [2005] EWHC 206, [2005] Lloyd’s Rep Med and Nathanson v Barnet & Chase Farm Hospitals NHS Trust [2008] EWHC 460 (QB) 309 (no duty to take a detailed psychiatric history where the doctor had no cause to doubt the patient’s ability to understand and act on the doctor’s advice). 4 Al-Hamwi (ibid). 5 The court made reference to the then current GMC publication Seeking Patients’ Consent: The Ethical Considerations, November 1998, which includes the need to take into account a patient’s beliefs and culture, and advises asking the patient whether they understood the information; at para 6. That 1998 guidance has since been replaced. The latest GMC guidance: ‘Decision making and consent’, 9 November 2020, mirrors the earlier guidance and lists examples of how clinicians can assist patients in their understanding at paras 27 and 28: see bit.ly/GMC-consent-2020.

Communication of consent 1.15 A consent which is not communicated is no consent at all. A doctor’s authority to act is based upon awareness of the capable patient’s consent. Consent can be manifested to the person seeking consent in three principal ways, namely in writing, orally, or by conduct.

Written consent 1.16 In practice, consent for all elective invasive treatment of any significance is obtained in writing signed by the patient.1 This is not a legal requirement, but is clearly a matter of prudence.2 The discipline of presenting a form to the patient and explaining the need for it provides some assurance that the patient has been provided with details of what is proposed and has actually consented to it. However, while it is a prudent step to take, the existence of such a form is no guarantee that consent has in fact been obtained. The patient may have been asked to sign a form immediately prior to the procedure being performed and/or without reading it or without an adequate or any explanation being given. A consent form has evidential value but is not conclusive proof of a proper consent procedure.3 1 Re J (A Minor) (Child in Care: Medical Treatment) [1993] Fam 15. 2 For example, see the Department of Health’s Reference guide to consent for examination or treatment (July 2009): (see bit.ly/DoH-Guide-2009). See also GMC, Decision making and consent, 9 November 2020, paras 6, 50–55 (see bit.ly/GMC-consent-2020). Note the rare exception where written consent is legally mandated under the Human Fertilisation and Embryology (HFE) Act 1990 (as amended), see s 12 and Sch 3. See Chapter 11: Assisted Reproduction, para 11.16ff for further information. 3 Popplewell J in Taylor v Shropshire Health Authority [1998] Lloyd’s Rep Med 395 said: ‘For my part I regard the consent form immediately before operation as pure window dressing in this case and designed simply to avoid the suggestion that a patient has not been told. I do not regard the failure to have a specialised consent form at the time to be any indication of negligence.’ See also GMC guidance (n2 above) at para 55: ‘filling in a consent form isn’t a substitute for a meaningful dialogue tailored to the individual’s needs’.

Oral consent 1.17 Most routine medical treatment is given by virtue of consent obtained informally and orally. There is nothing objectionable in law about this, and everything to commend it in practice – and in applying common sense – in relation to treatment and care that carries minimal risk or is repetitive and routine, such as taking blood. 11

1.17  Consent – General The new GMC guidance emphasises the importance of a proportionate approach in the communication of consent: ‘… obtaining a patient’s consent needn’t always be a formal, timeconsuming process. While some interventions require a patient’s signature on a form, for most healthcare decisions you can rely on a patient’s verbal consent as long as you are satisfied they’ve had the opportunity to consider any relevant information (see paragraph 10) and decided to go ahead.’1 1 See GMC guidance: Decision making and consent, 9 November 2020 at para 6 (see bit.ly/ GMC-consent-2020).

Conduct 1.18 Consent can often be inferred from the patient’s conduct. For example, an arm proffered to a nurse holding a syringe is sufficient consent to an injection – even if the patient insists on looking the other way.1 Before conduct – whether active or acquiescent – can be taken as consent, however, it must be shown that, by words or conduct, the practitioner has informed the patient of the nature and effect of what they wish to do, and that the patient’s conduct is an intentional response to that information; for example, a patient opening their mouth in response to a request to undertake an oral examination. 1

O’Brien v Cunard SS Co (1891) 28 NE 266, Supreme Judicial Court of Massachusetts (passenger on a boat who stood in a line of passengers waiting to see a surgeon and who held her arm out for a smallpox inoculation was held to have consented).

B  INFORMATION ABOUT RISKS No doctrine of informed consent in relation to trespass to the person 1.19 A failure to give any or any adequate information about the possible adverse effects of the proposed treatment or about its likelihood of success or failure does not render the practitioner liable to an allegation of assault, criminal or civil, even where competent professional practice requires such information to be given.1 The common law purpose of the doctrine of consent is to provide a framework for justifying medical treatment rather than to simply enforce a requirement that proper information be given to the patient. The question of the adequacy of the information falls within the realm of the duty of care, and so a failure to obtain informed consent will solely give rise to a cause of action in negligence.2 The concept of informed consent was outlined by Lord Scarman in his dissenting judgment in Sidaway:3 ‘Where there is a “real” or a “material” risk inherent in the proposed operation (however competently and skilfully performed) the question whether and to what extent a patient should be warned before he gives his consent is to be answered not by reference to medical practice but by accepting as a matter of law that, subject to all proper exceptions (of which the court, not the profession, is the judge), a patient has a right to be informed of the risks inherent in the treatment which is proposed.’ 1

Chatterton v Gerson [1981] QB 432.

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Consent – General 1.20 2 See also Shaw (Personal Representative of the Estate of Ewan Deceased) v Kovac [2017] EWCA Civ 1028 at para 68 where Davis LJ stated: ‘it has long been the law that where a doctor has failed to provide proper information as to risk prior to a medical procedure and that failure leads to consent being given which otherwise would have been withheld, and loss results, then that is actionable in negligence. The consent so given, is not regarded as a nullity … in the usual case the claim is not to be pleaded as one of trespass to the person (in the absence of fraud or bad faith)’. 3 Sidaway v Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital [1985] AC 871. Lord Scarman’s dissenting opinion was subsequently approved by the Supreme Court in the case of Montgomery v Lanarkshire Health Board [2015] UKSC 11, as was the decision of the Court of Appeal in Pearce v United Bristol Healthcare NHS Trust (1999) 48 BMLR 118.

Duty of care − common law position 1.20 The obligation to provide proper information about the risks of the proposed treatment is therefore protected by the law of negligence. Previously, case law held that a doctor simply owed a duty to their patients to provide such information about the risks of the proposed treatment as would be provided by any competent and responsible practitioner in the circumstances,1 with no distinction between advice given in relation to therapeutic and non-therapeutic procedures.2 However, there were circumstances in which the risk was so obviously important that any prudent doctor would warn of it; and in such circumstances the courts were entitled to hold that there was a duty to advise, even if accepted medical practice was not to do so.3 That application of the Bolam4 test was the subject of much criticism, and was overturned by the Supreme Court’s decision in Montgomery.5 This unanimous Supreme Court decision, which is declarative of the common law and, importantly, retrospective in effect,6 held that: ‘An adult person of sound mind is entitled to decide which, if any, of the available forms of treatment to undergo, and her consent must be obtained before treatment interfering with her bodily integrity is undertaken. The doctor is therefore under a duty to take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative or variant treatments. The test of materiality is whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it.’7 The sea-change codified by Montgomery is that patients’ and doctors’ perceptions of what may be substantial, significant or grave, may differ: hence the importance of the shift of onus onto doctors to ensure they advise of any risk to which a reasonable person in the patient’s position would be likely to attach significance. Limited exceptions to the above duty to disclose all material risks were identified, such as the ‘therapeutic exception’ where it is considered such disclosure would be ‘seriously detrimental to the patient’s health’. However, the Supreme Court warned that that ‘therapeutic exception’ should not be used to enable a clinician to prevent the patient from making an informed choice simply because the patient is liable to make a choice the doctor considers to be contrary to the patient’s best interests, as that would subvert the general principle that the patient should make the decision whether to undergo a proposed 13

1.20  Consent – General course of treatment.8 A decision to invoke the ‘therapeutic exception’ is also subject to the test that it must be made ‘in the reasonable exercise of medical judgment’. Lord Kerr and Lord Reed in Montgomery stated: ‘That is not to say that the doctor is required to make disclosures to her patient if, in the reasonable exercise of medical judgment, she considers that it would be detrimental to the health of her patient to do so.’9 They stressed that this ‘therapeutic exception’ was not to be abused: ‘It is a limited exception to the general principle that the patient should make the decision whether to undergo a proposed course of treatment: it is not intended to subvert that principle by enabling the doctor to prevent the patient from making an informed choice where she is liable to make a choice which the doctor considers to be contrary to her best interests.’10 Thus, the ‘therapeutic exception’ can only be used in the most exceptional circumstances – and any court subsequently judging a doctor’s use of this exception would subject it to the most anxious scrutiny. Professor of Healthcare Law, Emma Cave, reasoned that the exception should have a very limited role in English jurisprudence given the combined operation of Montgomery and the Mental Capacity Act.11 The focus should in fact be on adapting information to the individual patient – not on withholding key information necessary for consent: Cave notes that were disclosure to cause ‘undue stress’, Montgomery itself requires that the information should be ‘adapted to the characteristics of the patient and sensitively portrayed’. The true exceptions to Montgomery will apply, first, where the patient waives the right to certain information (as noted by Cave). This is not a therapeutic exception, but a recognition that the patient’s autonomy includes a right ‘not to know’. It would be counterintuitive to impose a duty upon a clinician that forced discussion of risks in that situation. Secondly, an exception arises in circumstances of necessity (such as an emergency or when dealing with an unconscious or otherwise incapable patient).12 As Cave states: ‘… potentially if the treatment is very urgent and the patient cannot consent in which case non-disclosure may be justified under the doctrine of necessity.’13 In ABC v St George’s Healthcare NHS Foundation Trust, the court considered whether doctors might be justified in sharing personal information without a patient’s consent.14 Yip J ruled that a Trust had to balance a duty of care to the daughter of a patient, who had a rare genetic condition, with a duty of care to her father, given that he had not consented to the information being shared. 1

Sidaway v Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital [1985] AC 871. 2 Such as sterilisations: Gold v Haringey Health Authority [1988] QB 481. 3 Sidaway (n1 above). 4 Bolam v Friern Hospital Management Committee [1957] 1 WLR 582. 5 Montgomery v Lanarkshire Health Board [2015] UKSC 11 at paras 87–93, which considered case law including Hunter v Hanley 1955 SC 200, 206; Bolam (ibid); Sidaway (n1 above); Rogers v Whitaker (Australia) (1992) 175 CLR 479; Pearce v United Bristol Healthcare NHS Trust (1999) 48 BMLR 118; Wyatt v Curtis [2003] EWCA Civ 1779; Chester v Afshar [2004] UKHL 41, [2004] 3 WLR 927; and Birch v University College London Hospital NHS Foundation Trust [2008] 104 BMLR 168. 6 As demonstrated in Jones v Royal Wolverhampton Hospitals NHS Trust [2015] EWHC 2154 (QB), where the court permitted the claimant to amend her Particulars of Claim only three

14

Consent – General 1.22 months before trial, to allege the absence of consent, notwithstanding the alleged conduct predated the case of Montgomery. 7 Montgomery (n5 above) at para 87. 8 Ibid at paras 85 and 91. 9 Ibid at para 85. 10 Ibid at para 91. 11 Cave, The ill-informed: consent to medical treatment and the therapeutic exception (2017) C.L.W.R. 46(2), 140-168: see bit.ly/CLWR-2017-Cave. 12 See also para 1.34 below, on scope of authority. 13 Cave (n11 above) at p 159. 14 ABC v St George’s Healthcare NHS Foundation Trust [2020] PIQR P13, [2020] EWHC 455 (QB). For a discussion on breach of duty, see in particular paras 166, 170–173, 178–196 and 261. The question of whether there was arguably a duty of care in this matter was discussed in the earlier decision of the Court of Appeal, ABC v St George’s Healthcare NHS Foundation Trust [2017] EWCA Civ 336. Given that the daughter (ABC) was not a patient, the issue in the case was effectively whether or not it was arguably fair, just and reasonable to impose a duty of care. The Court of Appeal referred to various passages of the GMC’s guidance at the time. The claimant argued that passages of the professional guidance made it clear that there were obligations to individuals outside the doctor/patient relationship who had a vital interest in genetic information. The defendant argued that the guidance imposed no such duty. Irwin LJ stated at para 23: ‘Of course there is no simple duty of disclosure. But if the clinician conducts the requisite balancing exercise, and concludes that it falls in favour of disclosure then a professional obligation arises. The question is whether a breach of that obligation is actionable.’

The test of materiality 1.21 The Supreme Court noted in Montgomery1 that any risk assessment will be fact-sensitive and take account of the characteristics of the patient, and hence cannot simply be reduced to percentages; the latter approach fails to take into account the nature of the risk and its likely effect on the patient’s life, the importance of the benefits sought by the treatment, or the alternatives available and their attendant risks. Hence the nature and magnitude of risk should be viewed through the prism of the patient’s circumstances in both an objective and subjective manner; given the risks should not only include those to which a reasonable patient in the patient’s position would be likely to attach significance, but also those risks to which the particular patient would be likely to attach significance. Presumably, the latter contemplates the inclusion of risks that a reasonable patient in their position might not contemplate, but of which they should nevertheless be informed. In addition to warning patients about specific risks in relation to their treatment, doctors must warn patients of the general inherent risks that surgery or treatment could exacerbate an existing condition. A failure to do so can amount to a material omission. However, a clinician is not required to warn of a risk of which they cannot reasonably be expected to be aware.2 1 2

Montgomery v Lanarkshire Health Board [2015] UKSC 11 at para 89. See also Green J at paras 56–62 of Thefaut v Johnston [2017] EWHC 497 QB. Duce v Worcestershire Acute Hospitals NHS Trust [2018] EWCA Civ 1307 at paras 39–44.

Duty to respond to specific needs of patient 1.22 The then GMC guidance on consent1 was referred to with approval in Montgomery (the patient having given birth in October 1999 in that case), 15

1.22  Consent – General and that guidance has largely been repeated in subsequent GMC advice.2 The latest GMC guidance, which came into force on 9 November 2020, embodies the principles outlined in Montgomery3 and emphasises the importance of discussing in advance what arrangements exist in relation to monitoring the effect of the treatment.4 The clinician must therefore engage the patient in dialogue with the aim of ensuring the patient understands the seriousness of their condition and the risks and benefits of the proposed and any reasonable alternative treatment, to permit an informed decision. Hence, any information provided needs to be comprehensible. In that regard, the GMC’s Good Medical Practice (updated 2019), requires doctors to possess ‘necessary knowledge of the English language to provide a good standard of practice and care in the UK’.5 The guidance also places clear requirements on clinicians to ensure any oral advice provided is in fact accurate and easily understood; also noting: ‘You must give patients the information they want or need to know in a way they can understand. You should make sure that arrangements are made, wherever possible, to meet patients’ language and communication needs.’6 The GMC’s guidance on consent7 emphasises the importance of talking with patients to find out what matters to them: ‘You should try to find out what matters to patients about their health – their wishes and fears, what activities are important to their quality of life, both personally and professionally – so you can support them to assess the likely impact of the potential outcomes for each option.’8 When discussing benefits and risks, the GMC’s guidance gives clinicians an outline of what should usually be discussed.9 The Royal College of Surgeons states that: ‘The surgeon discussing treatment with the patient should be suitably trained and qualified to provide the treatment in question and have sufficient knowledge of the associated risks and complications, as well as any alternative treatments available for the patient’s condition’. and addresses the particular difficulty of referral between specialties as follows: ‘There is a particular risk with patients being transferred between specialties. Patients can come to harm when there is lack of clarity about which doctor is responsible for the management of the patient. When a surgeon refers a patient for another procedure (e.g. interventional radiological procedure), it is the referring doctor who should formally hold the first part of the consent discussion and document it, as they understand the risks and benefits of the proposed options and any alternatives (including doing nothing) and can discuss these with the patient. The final confirmation of informed consent remains the responsibility of the doctor who will carry out the procedure.’10 Importantly, the Association of Anaesthetists of Great Britain and Ireland recommends: ‘Information about anaesthesia and its associated risks should be provided to patients as early as possible, preferably in the form of an evidence based online resource or leaflet that the patient can keep for future reference. Those undergoing elective surgery should be provided with information before admission, preferably at pre-assessment or at the time of booking, 16

Consent – General 1.23 but the duty remains on the anaesthetist to ensure that the information is understood.’ and: ‘Immediately before induction of anaesthesia, for example in the anaesthetic room, is not an acceptable time to provide elective patients with new information other than in exceptional circumstances.’11 1 GMC, Seeking Patients’ Consent: The Ethical Considerations, November 1998. 2 Where para 9 of the GMC’s Consent: patients and doctors making decisions together, 2 June 2008, largely mirrors that at para 4 of their ‘Seeking Patients’ Consent’, November 1998 publication. 3 See principles one to four of GMC, Decision making and consent, p 7 (see bit.ly/GMCconsent-2020). 4 GMC, Decision making and consent (ibid) at para 21; GMC, Good Medical Practice, 25 March 2013, updated 29 April 2019, at para 14.1 (https://bit.ly/GMC-GMP-2013). 5 GMC, Good Medical Practice (ibid). 6 Ibid, para 32. 7 GMC, Decision making and consent (n3 above) principle 4, p 7. 8 Ibid, para 17. 9 Ibid, para 23. 10 Royal College of Surgeons’ Consent: Supported Decision-Making – a good practice guide (see bit.ly/2jZ6qCo). 11 Association of Anaesthetists of Great Britain and Ireland: Consent for anaesthesia 2017 (see bit.ly/Anaes-Consent-2017).

Application of Montgomery 1.23 Since Montgomery, a number of cases have confirmed and applied the concept of ensuring the patient is appraised of all material facts, with an increased focus upon the patient’s perspective.1 The case of FM (A Child),2 as in Montgomery, involved inadequate advice as to caesarean section following a known risk of shoulder dystocia to the patient’s baby. The court counselled caution in relying on a patient’s assertion that she would have opted for caesarean section over a vaginal delivery had she been properly advised (given the risk of using ‘20/20 hindsight’). However, here the court gave particular weight to the patient’s firm assertion that she wished to avoid the traumatic delivery she experienced due to shoulder dystocia in previous pregnancies, and would have acted the same even if obstetric advice recommended a vaginal birth. In Thefaut v Johnson3 Green J correctly rejected the approach in Spencer v Hillingdon Hospital NHS Trust4 that the Montgomery approach to informed consent was simply a variant of Bolam: such an approach in Green J’s view failed to give sufficient weight to the subjective – and patient-centric – approach required by the Supreme Court in Montgomery. The judge adopted a helpful rubric by, first, reaching a prima facie position on the materiality of the information by considering the position from a predominantly objective standpoint, asking whether a reasonable patient with the patient’s condition would consider the risk to be material. Secondly (and importantly) he tested that position by applying more subjective criteria, with reference to the evidence from the patient herself. This dual approach ensures that meaning is given to the second limb of the Supreme Court’s materiality test in Montgomery, namely ‘the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to’ the risk. 17

1.23  Consent – General On the facts of Thefaut, Green J found both limbs were satisfied: the key determinations were that there was a 1% (and not 0.1%) risk of nerve damage, and that there was a 50% risk that the surgery would not eradicate or significantly mitigate the claimant’s back condition (when she had been told there was a very high chance of this happening). Green J stressed that it was important to place the advice about the risks and benefits of surgery into the context of the advice given as to recovery absent the procedure – a recovery which would probably have occurred within a year: ‘As to this the hypothetical patient is, in substance, deciding upon surgery as a means of achieving accelerated pain relief. Absent the surgery a full recovery and a dimming of the pain over time is expected. The counterfactual is hence one where the patient is measuring the risks of surgery and the chances of rapid pain relief against an alternative of a steady reduction in pain ending in full recovery in a period where the outer limit is about 12 months. For this reason, logically, any increase in the risks of surgery and/or a reduction in the prospect of pain reduction assume an enhanced significance. Any worsening of the odds in relation to either or both of those two matters makes it intrinsically less likely that a reasonable patient would opt for surgery and more likely that he/she would either elect to avoid surgery or at the very least seek a second opinion.’5 It was also important to take into account precisely which of the risks and benefits in practical terms meant most in practice to the patient: ‘In the present case for a reasonable patient with Mrs Thefaut’s condition by far and away the most important … influencing factor was the back pain.’6 Given these two conclusions and the determination that there was a significant understatement of the key material risks, the judge’s conclusion that there had been a breach of the Montgomery duty to advise was unsurprising. In the case of Tasmin,7 the claimant’s mother claimed she was not advised of the option of undergoing a caesarean section in a timely manner, bearing in mind the risk of significant injury to her baby. A timely caesarean section would have avoided the permanent severe neurological damage the baby suffered as a result of her umbilical cord tightening around her neck shortly before she was delivered by emergency caesarean section. However, the risk of permanent neurological damage through hypoxic insult was 1 in 1,000 (similar to the magnitude of risk in A v East Kent8), and hence in reliance on Montgomery and A v East Kent, Kay J considered that risk was simply ‘too low to be material’, allowing him to reject the claim. 1 2 3 4 5 6 7 8

As per the cases of FM (A Child) v Ipswich Hospital NHS Trust [2015] EWHC 775 (QB); A v East Kent Hospitals University NHS Foundation Trust [2015] EWHC 1038 (QB); and Jones v Royal Wolverhampton Hospitals NHS Trust [2015] EWHC 2154 (QB). FM (A Child) (ibid). Thefaut v Johnson [2017] EWHC 497 (QB). [2015] EWHC 1058 (QB). Thefaut v Johnson (n3 above) at para 80. Ibid, para 81. Tasmin v Barts Health NHS Trust [2015] EWHC 3135 (QB). A v East Kent Hospitals University NHS Foundation Trust [2015] EWHC 1038 (QB): where a mother claimed that, had she been correctly advised as to the risk of chromosomal abnormality in her baby whilst pregnant, she would have elected to have an amniocentesis and then, assuming she had been correctly informed of the outcome, a termination, as she did not want to take any risk of giving birth to a disabled child.

18

Consent – General 1.26

Article 8 1.24 The autonomy-centric approach of Montgomery reflects Art 8(1) of the European Convention on Human Rights (incorporated into English law by the Human Rights Act 1998),1 which provides: ‘Everyone has the right to respect for his private and family life’. This has long been held to extend to protecting the moral and bodily integrity of a person from unjustified assault, protecting a patient’s right to self-determination and autonomy.2 1

2

Montgomery v Lanarkshire Health Board [2015] UKSC 11 at para 80: ‘As well as underlying aspects of the common law, that value also underlies the right to respect for private life protected by article 8 of the European Convention on Human Rights. The resulting duty to involve the patient in decisions relating to her treatment has been recognised in judgments of the European Court of Human Rights, such as Glass v United Kingdom (2004) 39 EHRR 15 and Tysiac v Poland (2007) 45 EHRR 42 as well as in a number of decisions of courts in the United Kingdom. The same value is also reflected more specifically in other international instruments: see, in particular, article 5 of the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, concluded by the member states of the Council of Europe, other states and the European Community at Oviedo on 4 April 1997.’ X and Y v The Netherlands (1985) 8 EHRR 235; Glass v UK (2004) 39 EHRR 15; Tysiac v Poland (2007) 45 EHRR 42. See also Lambert v France – 46043/14 – Grand Chamber Judgment [2015] ECHR 545; Pretty v UK – 2346/02 [2002] ECHR 427 for a discussion of compulsory treatment and children’s rights; see Chapter 4: Deciding for Others – Children, para 4.11. See also Chapter 10: Sterilisation and Contraception and Chapter 14: Religious Objections to Treatment.

Delegation 1.25 Where the treating doctor with overall responsibility for the care of the patient, or the operating surgeon, delegates the task of obtaining consent from the patient to a more junior colleague, it will be essential to ensure that the person explaining the risks involved has an adequate understanding of them.1 For a doctor to be able to obtain real informed consent, they must have sufficient knowledge of the treatment or surgery proposed, its risks and benefits and any alternative treatment options available (such that they are able to explain these adequately to the patient and answer any questions). Clinicians delegating part of the decision-making process are still responsible for ensuring that the patient is given the necessary information, has considered their options and has given their consent before treatment.2 1 The latest GMC guidance, Decision making and consent, November 2020 (see bit.ly/GMCconsent-2020) outlines in paras 42–44 various factors clinicians should consider when deciding whether or not it is appropriate to delegate. 2 Ibid, para 45.

Duty to answer questions 1.26 There is a very clear duty on the part of those seeking a patient’s consent to answer truthfully and accurately any questions asked.1 This is so even where it is feared that the answers may dissuade the patient from treatment thought to be in their best interests or will give rise to unhelpful anxiety. Lord Bridge in Sidaway stated: ‘… when questioned specifically by a patient … about risks involved in a particular treatment proposed, the doctor’s duty must, in my opinion, be to answer both truthfully and as fully as the questioner requires.’2 19

1.26  Consent – General The GMC’s latest guidance similarly states: ‘You must answer patients’ questions honestly and accurately, and as fully as is practical in the circumstances. You must be clear about the limits of your knowledge and, if you can’t answer a question, explain whether it is something you are uncertain of or something that is inherently uncertain.’3 1 The GMC guidance, Decision making and consent (see bit.ly/GMC-consent-2020) also cites the need to record ‘the decisions made and actions agreed – and who is making the decisions and agreeing the actions’ in the patient’s clinical records at para 51. 2 Sidaway v Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital [1985] AC 871 per Lord Diplock at 895D and per Lord Bridge at 898. 3 GMC, Decision making and consent (n1 above) at para 25.

Information about alternative forms of treatment 1.27 There is a duty to inform of ‘any reasonable alternative or variant treatments’.1 The advice of the General Medical Council is to inform of all reasonable available alternatives.2 The key is to ensure that doctors: ‘Work in partnership with patients. Listen to, and respond to, their concerns and preferences. Give patients the information they want or need in a way they can understand. Respect patients’ rights to reach decisions with you about their treatment and care.’3 Lauren Sutherland QC4 cites the Canadian case of Seney v Crooks5 in support of what must be the accurate position that the common law does not require the doctor to advise of ‘fringe alternatives or alternative medicine practices’. However, Sutherland correctly stresses that: ‘… the fact that a doctor simply preferred one treatment over another did not relieve them of the obligation to advise of other acceptable and known procedures … [R]easonable alternatives may also include procedures which other physicians may recommend but the treating doctor may not’ and notes that: ‘… The Canadian courts have also endorsed the view that a patient should be informed of a known treatment which other doctors, in the same specialty, consider to be superior, even if the doctor does not agree with that view.’6 In the authors’ view this also reflects the position now in English law in light of Montgomery. 1

Montgomery v Lanarkshire Health Board [2015] UKSC 11 at para 87 and see the case of Spencer v Hillingdon Hospital NHS Trust [2015] EWHC 1058 (QB) (at para 1.23 above). In Haughian v Paine [1987] 4 WWR 97 the Saskatchewan Court of Appeal (albeit applying the doctrine of informed consent) held that a surgeon should advise the patient of the consequences of leaving an illness untreated and of alternative means of treatment and their risks. As this was not done, the patient did not give informed consent to his surgery. Pre-Montgomery, see Birch v University College London Hospital NHS Foundation Trust (2008) 104 BMLR 168. Post-Montgomery, see Malik v St George’s University Hospitals NHS Foundation Trust [2021] EWHC 1913 (QB), where the court held a responsible body of surgeons would have concluded there were no reasonable alternative treatments at para 93. 2 GMC guidance, Decision making and consent (see bit.ly/GMC-consent-2020), principle 4 and at para 73: ‘You should do your best to make sure that patients reach their own decision, having considered relevant information about the available options, including the decision to take no action.’

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Consent – General 1.28 3 GMC, Good Medical Practice, p 2, 25 March 2013, updated 29 April 2014 (see bit.ly/GMCGMP-2013), cited at para 77 of Montgomery (n1 above). This statement is repeated in the latest GMC guidance, Decision making and consent (n2 above), p 2. 4 Sutherland, Montgomery: myths, misconceptions and misunderstanding (2019) JPI Law, 3, 157–167. 5 Seney v Crooks (1998) 166 DLR (4th) 337 (Alta CA). 6 Sutherland (n4 above).

Known comparative outcomes 1.28 Should a doctor put themself forward to perform treatment if there is a practitioner elsewhere who does it better or is known to have a better record of outcome? If a centre has a higher mortality or morbidity rate than others, should it cease the treatment in question? To what extent, if at all, should doctors inform patients about such comparative outcomes? The medical profession has been struggling towards ethical answers to these difficult questions, which were at the centre of a public inquiry in 2001.1 The following principles, which take account of the Inquiry’s recommendations, are suggested as forming the basis of prudent practice: ●● ●● ●●

●●

Doctors and all those responsible for the provision of health services ought to keep their results under review and apply to them accepted clinical audit systems. Where it is possible to compare outcomes with a national or other accepted standard, this should be done. Where the performance of the doctor or the centre is below a generally accepted deviation from the standard, serious consideration should be given to whether it is in the interests of patients to be offered treatment by that doctor or at that centre, or whether patients should be referred elsewhere until the cause of the deviation has been identified and remedied. Comprehensible information about the performance of the Trust, of the specialty and of the consultant and their team should be available for patients, even where the outcomes are within the accepted range. Indeed, consideration should be given to specifically referring the patient to this information.

The GMC guidance states it ‘might be relevant’ for patients to be told about treatments outside of those that individual doctors or the Trust can offer. The guidance also states that if doctors are being asked to practise outside of their competence, or feel insufficiently supported, they ‘must consider raising a concern’ with the GMC.2 1 The Report of the Public Inquiry in children’s heart surgery at the Bristol Royal Infirmary 1984–995, July 2011, can be found here: see bit.ly/2adUmJo. In Ashcroft, Dawson, Draper and McMillan, Principles of Health Care Ethics (2nd edn, Wiley, 2007), p 320, the authors stated: ‘There was a failure of informed consent in [the Bristol Royal Infirmary] cases, not because the procedures turned out badly, but because it is obviously relevant to patients to know about the manifest inadequacies of those surgeons. In placing themselves or their loved ones in the hands of these surgeons they were unwittingly making themselves or their loved ones vulnerable to the lethal consequences of surgical incompetence.’ Interestingly, they argue further that in the context of a proper ‘informed consent’ doctrine, information about a surgeon’s relative performance is vital: ‘What creates an ethical obligation to disclose a risk is not the magnitude or probability of the risk itself, but whether that particular risk is material to the patient and whether the doctor could reasonably be aware that this risk was material to this patient.’ 2 GMC guidance, Decision making and consent (see bit.ly/GMC-consent-2020), para 47.

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1.29  Consent – General 1.29 Members of the public can access data on some speciality treatments for consultants and hospitals online. Rather than all the information being available on one website, the NHS publishes a directory of different websites providing various links for different areas of treatment.1 1 See bit.ly/myNHSspecialties. This replaced the NHS Choices’ ‘MyNHS’ website which ran from 2013 until 2019 and was disbanded because the NHS contended the website was not used enough to justify its cost. The website was also subject to criticism for publishing overly simplistic data: see bit.ly/2cDCDvk.

C  VITIATING FACTORS 1.30 (a) (b) (c)

A consent is not valid if it is obtained: by fraud; by duress; or from a person who lacks capacity.

A doctor should satisfy themself that none of these factors applies.

Fraud 1.31 Consent obtained by a fundamental deception – such as to the nature of the act or the identity of the person who is to provide the treatment – is no consent at all and provides no justification for treatment which would otherwise be an assault.1 The test is whether the deception is of a nature which means that the decision is not really that of the patient at all.2 Any consent given by a patient in reliance on a false representation on these matters made by the person seeking consent, is invalid. The deception must be material; that is, must be one upon which the patient might reasonably be expected to rely, or made knowing the patient is in fact relying upon it. The deception must also relate to the nature of the treatment or the identity of the person providing that treatment.3 Examples might be: ●● ●● ●● ●●

Consent obtained by or for a person pretending to be a doctor. A materially inaccurate account of the surgeon’s outcome figures. A false description of the procedure, for example, stating that the patient is to have their appendix removed, when the intention is to perform a hysterectomy. Consent obtained for an ulterior motive, such as an indecent assault or to bolster research results.

Surprisingly, a deception about the practitioner’s entitlement to practise has been held by the Court of Appeal (Criminal Division) in R v Richardson4 not to vitiate consent. The appellant was a registered dental practitioner until 30 August 1996, but was suspended from practice by the General Dental Council. While still suspended, she carried out dentistry on a number of patients in September 1996. The Court of Appeal held that the deception concerning her status as a registered practitioner was not a deception as to the ‘identity’ of the person who was to provide treatment. Therefore it did not vitiate consent in criminal law. However, in the later case of R v Tabassum5 the Court of Appeal refused to quash three convictions of indecent assault where three women had taken part in a 22

Consent – General 1.31 breast cancer survey carried out by the appellant which involved him touching their breasts in order to demonstrate how they should examine themselves. The women believed him to be medically qualified and that the touching was for medical purposes when in fact he had no medical qualifications. In distinguishing Richardson, Rose LJ said: ‘In Richardson, the case proceeded solely by reference to the point on identity … In the present case the motive and intent of the defendant were irrelevant … The nature and quality of the defendant’s acts in touching the breasts of women to whom, in sexual terms he was a stranger, was unlawful and an indecent assault unless the complainants consented to that. On the evidence … consent was given because they mistakenly believed that … the touching was for a medical purpose. As this was not so, there was no true consent. They were consenting to touching for medical purposes, not to indecent behaviour, that is, there was consent to the nature of the act but not its quality.’6 In R v Melin7 the appellant had administered a series of two Botox injections each to two women who suffered serious harm as a result. He was not a doctor and did not have any medical qualifications. The first woman was told (but not by the appellant) that a nurse would carry out the first treatment; the appellant then told her that he had medical qualifications just before her second treatment. The second woman was told by the appellant that he had medical qualifications immediately before the first treatment; the harm was caused by the second. The appellant was convicted of two counts of causing grievous bodily harm. The Court of Appeal (Criminal Division) considered whether the conviction should be set aside. Simbler J set out the common law position as follows: ‘At common law it is generally well established that for offences against the person a defendant’s fraud as to conduct will not negative the victim’s consent unless it deceives the victim either as to the defendant’s identity or as to the nature of the act. So if a victim agrees to a medical or cosmetic procedure conducted by X, consent is prima facie vitiated if the defendant conducting the procedure is not X but is impersonating X. Likewise, in relation to the nature of the act.’8 The Court of Appeal (Criminal Division) again distinguished the facts in the case from those in R v Richardson. Unlike Richardson, where the appellant failed to inform the patient of his lack of qualification, the appellant made positive representations as to his qualifications. Simbler J stated that ‘deception as to a person’s identity as a doctor where that is integral to his or her identity, can as a matter of law vitiate consent’.9 The Court of Appeal (Criminal Division) concluded that the conviction on one count of GBH should be set aside on the basis that the woman was ‘already in the treatment room poised for the treatment’ at the point that representations were made about the appellant’s medical qualifications. By that stage Simbler J stated that it was ‘difficult to see how the statement he made 30 seconds before the injection went in … can have had any operative effect on her decision to take up the second treatment’. The conviction on the other count was ruled not to be unsafe.10 The decisions in Tabassum and Melin suggest the unfortunate view of the court in Richardson may be very narrowly confined. 23

1.31  Consent – General 1 In Chatterton v Gerson [1981] QB 432, Bristow J said that to prove trespass to the person it had to be shown that the consent was ‘unreal’, as noted earlier at para 1.4, n2 above. 2 Lord Donaldson in Re T (adult: refusal of treatment) [1993] Fam 95 at 113. 3 As per the case of R v Clarence (1888) LR 22 QBD 23 that held the fraud had to be as to the nature of the act itself or as to the identity of the actor. 4 R v Richardson [1998] 3 WLR 1292, [1999] QB 444, [1998] 2 Cr App R, In reliance on the case of R v Clarence (n3 above). 5 R v Tabassum [2000] Crim LR 686, [2000] All ER (D) 649, CA. 6 Ibid, para 37. 7 R v Melin [2019] EWCA Crim 557, [2019] QB 1063. 8 Ibid, para 27. 9 Ibid, para 31. 10 Ibid, paras 39–40.

Duress and undue influence 1.32 Consent cannot be validly obtained from a person not acting under their own free will; that is, where the will of the patient is overborne by circumstances over which they have no control.1 Thus if the patient is detained against their will and feels forced to consent to treatment in order to escape detention, the consent will not be recognised. Similarly, if undue influence is brought to bear by a third party, consent will not be valid. Doctors need to be aware of social and other factors in the patient’s background which may render him vulnerable to pressure either to submit to or to refuse treatment. This may be a far from easy task. The matters to be considered were set out by Lord Donaldson of Lymington MR: ‘A special problem may arise if at the time the decision is made the patient has been subjected to the influence of some third party. This is by no means to say that the patient is not entitled to receive and indeed invite advice and assistance from others in reaching a decision, particularly from members of the family. But the doctors have to consider whether the decision is really that of the patient. It is wholly acceptable that the patient should have been persuaded by others of the merits of such a decision and have decided accordingly. It matters not how strong the persuasion was, so long as it did not overbear the independence of the patient’s decision. The real question in each such case is “Does the patient really mean what he says or is he merely saying it for a quiet life, to satisfy someone else or because the advice and persuasion to which he has been subjected is such that he can no longer think and decide for himself?” In other words “Is it a decision expressed in form only, not in reality?” ‘When considering the effect of outside influences, two aspects can be of crucial importance. First, the strength of the will of the patient. One who is very tired, in pain or depressed will be much less able to resist having his will overborne than one who is rested, free from pain and cheerful. Second, the relationship of the “persuader” to the patient may be of crucial importance. The influence of parents on their children or of one spouse on the other can be, but is by no means necessarily, much stronger than would be the case in other relationships. Persuasion based upon religious belief can also be much more compelling and the fact that arguments based upon religious beliefs are being deployed by someone in a very close relationship with the patient will give them added force and should alert the doctors to the possibility – no more – that the patient’s capacity or will to decide has been overborne. In other words the patient may not mean what he says.’2 24

Consent – General 1.34 The GMC guidance states doctors should be aware that patients may feel pressure to have particular treatment and that pressure can come from others, their own beliefs or societal expectations.3 The guidance emphasises the importance of clinicians being aware of various factors that increase susceptibility to pressure such as: ‘experiencing domestic or other forms of abuse, resident in a care home, cared for or supported because of disability, detained by police or immigration services or in a prison, subject to compulsory treatment or assessment orders, or at a risk of becoming so.’4 If doctors believe that patients are under such extreme pressure that they cannot exercise free will, guidance given to doctors is that they ‘should seek advice through local procedures, consult [their] medical defence body or professional association or seek independent legal advice’.5 1 2 3 4 5

Re T (adult: refusal of treatment) [1993] Fam 95. Re T ibid at 113. GMC guidance, Decision making and consent (see bit.ly/GMC-consent-2020), para 70. Ibid, para 71. Ibid, para 75: doctors should follow the guidance in paras 72–74 before seeking further legal advice or advice from their professional association.

Capacity 1.33 The person consenting must have the relevant mental capacity to do so. The test for and assessment of capacity are dealt with in detail in subsequent chapters.1 Consent given by a person not possessing the relevant capacity is invalid and cannot be used to justify the provision of treatment. A person over the age of 16 years is presumed to have capacity unless the contrary is shown.2 Where there is no evidence about a patient’s capacity, the presumption applies. A doctor does not need to perform a capacity test in every case, but where there is some concern as to a patient’s capacity, for whatever reason, further investigation must be made. Previously, at common law, it was not clear whether a doctor who mistakenly, but in the circumstances reasonably, believed that the patient had capacity committed an assault if they provided treatment relying on that belief. The position is now clarified with the introduction of the MCA s 5, which provides that there will be no liability where, prior to carrying out a particular proposed act in relation to the care and treatment of the patient, a doctor has taken reasonable steps to establish whether the patient lacks capacity to consent to it, and when carrying out the act, reasonably believes that the patient lacks capacity and that the act is in the patient’s best interests.3 1 See Chapter 2: Consent – Adults, 3: Deciding for Others – Adults and Chapter 4: Deciding for Others – Children. 2 See Chapter 2: Consent – Adults, para 2.10 for further discussion. 3 See Chapter 3: Deciding for Others – Adults.

D  SCOPE OF AUTHORITY 1.34 Treatment may be carried out as authorised by the consent. This justifies the provision only of the treatment actually described in the consent. 25

1.34  Consent – General Unless the consent expressly or impliedly allows for it, no variation is authorised. This is not to say that no different treatment may be carried out even though no consent has been given for it: ●●

●●

If it emerges that the proposed treatment is not possible – for example, where a cancerous tumour proves to be inoperable – the doctor may stop the procedure which has been authorised and undertake conservative treatment consequent on their inability to pursue the procedure originally contemplated. If an emergency arises while the patient is unconscious during an authorised procedure, and it is necessary to act immediately to save life or prevent a deterioration in health, the doctor may provide the treatment necessary to this end.1 What they may not do is to extend the scope of what has been authorised merely because they find an unexpected condition which they consider it to be in the patient’s interests to deal with. Many consent forms contain a form of words designed to permit a surgeon to perform any extra procedures which may become necessary during the procedure specified; the surgeon is also asked to specify these other procedures.2 Only very cautious reliance should be placed on such a provision. It cannot be a justification for embarking on treatment of a type not discussed with the patient, and only remotely connected with what was authorised. It should be regarded as authorisation for no more than treatment necessarily ancillary to that which has been authorised. In our view this has always been the position at common law, but it is further reinforced by the right to autonomy over one’s body under Art 8.3

1 MCA, s 5. 2 See Appendix 2: Consent form 1 (sample). 3 See para 1.24 above, on Art 8.

E  DURATION OF AUTHORITY 1.35 Consent is inevitably intended to cover some future event: retrospective consent can have no legal effect.1 The consent may be for an injection to be offered almost immediately or it may be for an operation to be performed in several weeks’ time. In either case the consent may be presumed to be intended to last until the procedure is performed unless the patient has specified some time limit or condition under which the consent will be revoked. Where this is done, and it will be an unusual occurrence, the doctor taking the consent must be careful to record what is required. A consent will not survive a material change of circumstance.2 The following are examples where the consent might cease to be valid: ●● ●●

Where the consent specifies a particular doctor to perform the procedure and they are unavailable. Where new information, either generally about the procedure, or specifically about the patient, comes to light which fundamentally alters the risks of the procedure of which the patient has or ought to have been told.3

26

Consent – General 1.38 ●●

Where the clinical condition of the patient changes or the diagnosis changes so that in the opinion of the responsible doctor the procedure consented to is no longer necessary in the patient’s interests.

1

It may, however, have an evidential effect in relation to a causation issue in a civil negligence claim, by showing that the patient would have consented if asked. 2 Quoted with approval by Munby J in HE v A Hospital NHS Trust [2003] EWHC 1017 (Fam) at para 29. 3 The effect on the legal validity of the consent will depend on whether the information on the risks is of such a character that ignorance of it results in the consent not being real; see also the discussion on information about risks above at paras 1.19–1.29.

1.36 Consent will therefore survive a patient’s loss of capacity.1 Indeed, this rule is sensibly applied in all surgical procedures under general anaesthetic: the consent to the operation remains valid although the patient has been rendered unconscious by the anaesthetic. A difficulty may of course arise if, following a loss of capacity, circumstances change to an extent where a further consent would usually be required. A doctor may undertake different treatment, but only if it is necessary as a matter of urgency and it is not possible to wait until the patient has recovered capacity. If the patient is unlikely to recover capacity at all, and it remains in the patient’s best interests for the doctor to act immediately, then the doctor may so act subject to the principles governing the treatment of incapacitated patients.2 Where capacity may be only temporarily absent, clinicians would be advised to proceed with greater caution.3 Likewise, much more careful consideration of ongoing consent is required where the patient’s capacity may fluctuate during the course of specific treatment. As stressed in later chapters, it is essential for practitioners to try to foresee as best they can those circumstances in which a currently capacitous patient may lose capacity in the future – and plan accordingly. Sustained efforts should be made to obtain a clear indication from the currently capacitous patient as to their future wishes should certain treatment decisions arise at a time in the future when they may not have capacity. If appropriate an advance decision to refuse treatment may be made.4 1 See Chapter 2: Consent & Capacity – Adults, para 2.23 and paras 2.32–2.42. 2 MCA, s 5; see Chapter 3: Deciding for Others – Adults, and Chapter 4: Deciding for Others – Children. 3 See Chapter 2: Consent & Capacity – Adults, para 2.23. 4 MCA, ss 24–26. See Chapter 2: Consent & Capacity – Adults, paras 2.32–2.42.

F  WITHDRAWAL OF AUTHORITY 1.37 A patient possessing the appropriate mental capacity may withdraw consent at any time before the treatment so authorised has been provided. Any consent ceases to have effect from that moment.1 1 See Chapter 2: Consent & Capacity – Adults, para 2.31 for a discussion of withdrawal of consent after treatment has started.

G CONCLUSION 1.38 The Supreme Court in Montgomery1 has ensured that UK law now reflects the guidance provided to doctors, that good consent is informed consent. Practitioners must ensure not only that information provided before 27

1.38  Consent – General medical treatment encompasses material risks – as assessed from the viewpoint of the particular patient – but also any alternative or variant treatments. The Supreme Court has reflected the general societal and legal shift away from medical paternalism and towards full patient autonomy. This shift can also be seen in later chapters when consideration is given to how the views and beliefs of incapacitous patients have become more central to the determination of what treatment should be mandated in their best interests. 1

Montgomery v Lanarkshire Health Board [2015] UKSC 11.

For updating material and hyperlinks related to this chapter, see www.serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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Chapter 2

Consent & Capacity – Adults

A B

C

D

Adult 2.1 General rules  2.2 General rule 1: A capacitous adult’s wishes must be respected  2.2 General rule 2: There is only limited proxy of consent for others  2.3 General rule 3: Power to treat in an incapacitous person’s best interests 2.4 Capacity 2.5 Presumption of capacity  2.5 Definition of capacity  2.6 The specific decision  2.8 Capacity is decision-specific: what must be considered is capacity to make the specific decision that has to be made  2.8 The relevant information  2.9 Key to any assessment of capacity is the identification of the information relevant to that specific decision  2.9 Establishing capacity to consent, as opposed to obtaining ‘informed consent’  2.10 The ‘limbs’ of the functional test in section 3  2.11 (a) Understanding the relevant information  2.11 (b) Retaining the relevant information  2.12 (c) Using and weighing the relevant information  2.13 (d) Communicating the decision  2.15 Unwise or irrational decisions  2.16 The assessment of capacity  2.17 Key principles in determining capacity  2.17 The steps to be taken to assess capacity  2.18 Guidance on the assessment  2.19 Recording capacity assessments  2.20 The court makes the decision  2.21 Temporary incapacity  2.22 Anticipated loss of capacity – Guy’s and St Thomas’s NHS Foundation Trust v R 2.23 Consent 2.24 The absolute nature of an adult’s consent  2.24 Treatment must be lawful  2.25 The obligation to treat in accordance with expressed wishes  2.26

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2.1  Consent & Capacity – Adults E

F G

H

Refusal 2.27 Capacitous decisions to refuse treatment that may accelerate death  2.28 Case of Ms C 2.29 Obstetric treatment in the interests of a viable foetus no exception  2.30 Change of mind  2.31 Advance decisions  2.32 General principle  2.32 Advance decisions under the MCA  2.33 Validity 2.34 Applicability 2.35 Advance decisions and MHA s 63  2.37 Form 2.38 Informed refusal?  2.39 Knowledge 2.40 Duration 2.41 Records 2.42 Conclusion 2.43

A ADULT 2.1 An adult is considered to be a person aged 18 years or more. Certain aspects of the law of consent apply only to adults. However, the threshold age for application of the Mental Capacity Act 2005 (‘MCA’) is generally age 16.1 1 See MCA, s 2(5). The MCA received Royal Assent on 7 April 2005, and was fully in force from October 2007; it was subsequently amended by the Mental Health Act 2007 to include the Deprivation of Liberty Safeguards (‘DoLS’) in Sch A1. There are two exceptions to the general rule that the MCA does not apply under the age of 16 where the court considers that the child will still lack capacity to make decisions in respect of these matters when they reach 18 (s 2(6) and s 18(3) of the MCA): (1) the Court of Protection may take decisions about the property or finances of a child under 16; (2) there is no lower age limit when considering the criminal offence of ill treatment or wilful neglect of an incapable child under s 44 of the MCA. There are also four exceptions to the general rule that the starting point is age 16: a minor under 18 cannot grant a lasting power of attorney, nor an advanced decision to refuse treatment; and a statutory will cannot be made on their behalf; lastly, the DoLS only apply to persons aged 18 and above: see Chapter 4: Deciding for Others – Children, para 4.4; Chapter 5: Restraint and Deprivation of Liberty, para 5.3.

B  GENERAL RULES General rule 1: A capacitous adult’s wishes must be respected 2.2 Regardless of how wise or unwise the patient’s decision may appear to others, there is no general power to impose or withhold treatment contrary to the capacitous patient’s choice1 unless the treatment is compulsory treatment for a mental disorder provided under the Mental Health Act 1983 (‘MHA’).2 1 B v An NHS Hospital Trust [2002] Lloyd’s Rep Med 265. 2 See Chapter 3: Deciding for Others – Adults, para 3.4.

30

Consent & Capacity – Adults 2.5

General rule 2: There is only limited proxy of consent for others 2.3 There is a frequently held misconception that the incapacitous patient’s next of kin has an overriding right to decide upon treatment for their relative. This is not the case. Under the MCA, proxy consent in decisionmaking for others lies with only those with a lasting power of attorney over health and welfare decisions, and deputies appointed by the court to decide on behalf of the incapable patient.1 The relatives of an incapacitous patient, and others close to them, do have a right to be consulted and to provide their views, which should be taken into account before treatment decisions are taken.2 1 See Chapter 3: Deciding for Others – Adults, para 3.9. 2 See Chapter 3: Deciding for Others – Adults, generally; and note para 3.25 on the ability of a capacitous adult to restrict the sharing of information.

General rule 3: Power to treat in an incapacitous person’s best interests 2.4 Prior to the MCA, the common law doctrine of necessity could be relied upon to permit doctors to provide urgent medical treatment to an incapable person where it was in their best interests. Since the MCA, that common law defence is now on a statutory footing in s 5 of the Act.1 1 See Chapter 3: Deciding for Others – Adults generally; and para 3.11 for consideration of whether the doctrine of necessity still applies.

C CAPACITY Presumption of capacity 2.5 The person consenting must have the relevant mental capacity to do so. All those over 16 years old are presumed to possess the capacity to consent to medical treatment unless the contrary is shown.1 Where there is no evidence about a patient’s capacity, the presumption will apply. As health care professionals are entitled to rely upon the presumption of capacity, there is no need to perform a capacity test on every patient before providing agreed treatment. However, if there is doubt over a patient’s capacity, which gives rise to a question over their capacity to make a specific decision, then the doctor must investigate capacity further.2 That may be apparent as a result of the patient’s behaviour or circumstances, or their having previously been assessed as lacking capacity to make other decisions.3 In practice, issues over capacity may often remain unnoticed until there is a disagreement between the patient and their doctor. Regardless of how the issue arises, once it is apparent, a doctor cannot ignore the possibility of incapacity and expect to be able to rely on the patient’s consent, if it transpires the patient did not have capacity to give it. 1 2 3

MCA, s 1(2). See also Chapter 4: Deciding for Others – Children. MCA Code of Practice, para 4.34. The Code of Practice can be found at: bit.ly/MCA-Code-ofPrac. MCA Code of Practice, para 4.35.

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2.6  Consent & Capacity – Adults

Definition of capacity 2.6 Capacity for those 16 years or over is to be determined by reference to the principles set out in the MCA, the key relevant parts of which are in ss 2 and 3. ‘2 People who lack capacity (1) For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain. (2)  It does not matter whether the impairment or disturbance is permanent or temporary. (3) A lack of capacity cannot be established merely by reference to— (a) a person’s age or appearance, or (b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity. (4) In proceedings under this Act or any other enactment, any question whether a person lacks capacity within the meaning of this Act must be decided on the balance of probabilities. ‘3 Inability to make decisions (1) For the purposes of section 2, a person is unable to make a decision for himself if he is unable— (a) to understand the information relevant to the decision, (b) to retain that information, (c) to use or weigh that information as part of the process of making the decision, or (d) to communicate his decision (whether by talking, using sign language or any other means). (2) A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means). (3) The fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision. (4) The information relevant to a decision includes information about the reasonably foreseeable consequences of— (a) deciding one way or another, or (b) failing to make the decision.’ In A Local Authority v JB,1 the Supreme Court considered alternative approaches to capacity, and observed that the MCA broadly adopts the ‘function’ approach, which ‘focuses upon the personal ability of the individual concerned to make a particular decision and the subjective processes followed by him in arriving at the decision.’2 The MCA and its accompanying Code of Practice (which must be taken into account by persons ‘acting in relation to’ someone who lacks capacity),3 emphasise the need to involve and assist patients and those close to them

32

Consent & Capacity – Adults 2.7 in the decision-making process with regard to medical treatment. The MCA codifies and expands upon pre-existing common law principles in respect of the determination of capacity and provides a framework for decision-making for those who lack capacity in respect of medical treatment. Although the test for determining capacity is now enshrined in ss 2 and 3 of the MCA, this has been held to mirror the previous common law test.4 As much of the MCA draws upon existing common law principles, pre-2007 jurisprudence may also retain relevance to determination of matters under the MCA. 1 2 3 4

[2021] UKSC 52, hereafter ‘Re JB.’ Ibid at paras 57–61. MCA, s 42 (4). Re MB (An Adult: Medical Treatment) [1997] EWCA Civ 3093; Local Authority X v MM & KM [2007] EWHC 2003 (Fam) at para 74.

2.7 As stated in s 2(1) and (2) of the MCA, a person lacks capacity in relation to a matter, if at the material time, the person is unable to make a decision for himself (referred to as the ‘functional’ test); and the inability to make a decision is because of a temporary or permanent impairment of or disturbance in the functioning of the person’s mind or brain (the element of causation and the ‘diagnostic’ test). In Re JB,1 the Supreme Court considered there were two questions, to be addressed in the following sequence: (1) (2)

whether P is unable to make a decision for themself in relation to the matter at issue, and whether that inability is ‘because of’ an impairment of, or a disturbance in the functioning of, P’s mind or brain.2

The second question requires the court to consider ‘whether there is a clear causative nexus between P’s inability to make a decision for himself in relation to the matter and an impairment of, or a disturbance in the functioning of, P’s mind or brain’3 and so requires consideration of both P’s diagnosis and the element of causation. Examples of an impairment or disturbance in the functioning of the brain are given in para 4.12 of the MCA Code of Practice, and include mental illness, dementia, organic brain injury, significant learning disabilities and intoxication. The MCA makes clear that a person can only lack capacity because of an impairment or disturbance of mental or brain function. Refusal of treatment because of obstinance or belligerence will not suffice. The statutory definition of the ‘functional’ part of the test is found in s 3(1) of the MCA above, each limb of which is addressed below. A person will only lack capacity if there is a clear causative link between the inability to make the specific decision under consideration and the impairment of or disturbance in the functioning of the mind or brain. In PC & NC v City of York Council, MacFarlane LJ stated: ‘There is, however, a danger in structuring the decision by looking to s 2(1) primarily as requiring a finding of mental impairment and nothing more and in considering s 2(1) first before then going on to look at s 3(1) as requiring a finding of inability to make a decision. The danger is that the strength of the causative nexus between mental impairment and inability to decide is watered down. That sequence – “mental impairment” and then “inability 33

2.7  Consent & Capacity – Adults to make a decision” – is the reverse of that in s 2(1) – “unable to make a decision … because of an impairment of, or a disturbance in the functioning of, the mind or brain”. The danger in using s 2(1) simply to collect the mental health element is that the key words “because of” in s 2(1) may lose their prominence and be replaced by words such as those deployed by Hedley J [at first instance]: “referable to” or “significantly relates to”.’4 This does not, however, equate with a need to always identify the precise underlying pathology in order to establish a causal link between the impairment or disturbance and the inability to make a decision. In Pennine Acute Hospitals NHS Trust v TM, Hayden J stated: ‘It is a misunderstanding of section 3 MCA 2005 to read it as requiring the identification of a precise causal link when there are various, entirely viable causes. Insistence on identifying the precise pathology as necessary to establish the causal link is misconceived. Such an approach strikes me as inconsistent with the philosophy of the MCA 2005. What is clear, on the evidence, is that the Trust has established an impairment of mind or brain and that has, in light of the consequences I have identified, rebutted the presumption of capacity.’5 Any question of capacity falls to be determined on the balance of probabilities.6 Discrimination must be avoided: a lack of capacity cannot be established by reference to: (a) (b) 1 2 3 4 5 6 7

a person’s age or appearance; or a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity.7

Re JB [2021] UKSC 52. Ibid at paras 66–79. Ibid at para 78. PC & NC v City of York Council [2013] EWCA Civ 478 at para 58. Pennine Acute Hospitals NHS Trust v TM [2021] EWCOP 8 at para 34. MCA, s 2(4). MCA, s 2(3).

The specific decision Capacity is decision-specific: what must be considered is capacity to make the specific decision that has to be made 2.8 The MCA capacity test applies to decisions such as where to live and who to have contact with, as well as whether or not to have medical treatment; thus it is unsurprising that there is no prescriptive guidance in the statute or the Code of Practice as to what exactly must be understood to demonstrate capacity. Per Lord Stephens in Re JB: ‘As the assessment of capacity is decision-specific, the court is required to identify the correct formulation of “the matter” in respect of which it must evaluate whether P is unable to make a decision for himself’.1 The phrase ‘at the material time’ in s 2(1) is also of importance: capacity must be considered at the time the relevant decision is to be made. An assessment of capacity must therefore be based on a person’s ability to make a specific decision at the time that decision needs to be made.2 34

Consent & Capacity – Adults 2.9 While some patients, such as those with very severe learning difficulties, will be so globally impaired that they lack capacity in respect of all medical treatment decisions, an ‘all or nothing’ approach to the assessment of capacity must be avoided. The anorexic patient, for example, who may be incapable of making decisions about accepting nutrition, may well have capacity to decide whether to consent to an appendectomy. The importance of assessing capacity for specific decisions was emphasised in Local Authority X v MM & KM: ‘capacity is “issue specific”, so someone may have capacity for one purpose but lack capacity for another purpose. That is why in cases of this kind it has now become the practice to grant separate declarations (for example) as to a vulnerable adult’s capacity (i) to litigate, (ii) to decide where she should reside, (iii) to decide whom she has contact with, (iv) to decide on issues concerning her care, (v) to consent to sexual relations, (vi) to consent to marry and (vii) to manage her financial affairs … ‘… capacity is not merely issue specific in relation to different types of transaction; capacity is also issue specific in relation to different transactions of the same type. Thus a vulnerable adult may have capacity to consent to a simple medical procedure but lack capacity to consent to a more complex medical procedure. In the same way a vulnerable adult may have capacity to conduct some simple piece of litigation but lack the capacity to conduct more complex litigation.’3 The recent case of Tower Hamlets LBC v A4 reiterated this point in circumstances where the Local Authority had wrongly conflated capacity to decide residence with capacity to decide care. Whilst the two may overlap, P’s capacity to make a decision about care does not determine their capacity to make a decision about residence. The same point applies when assessing capacity to conduct proceedings: in Liverpool City Council v CMW,5 P was found to lack capacity to conduct Court of Protection proceedings, whilst having capacity to conduct family proceedings, due to the longer and more complex nature of the COP proceedings. 1 2 3 4 5

Re JB [2021] UKSC 52 at para 68. MCA Code of Practice, para 4.4. [2007] EWHC 2003 (Fam), [2009] 1 FLR 443 per Munby J at paras 64 and 65. [2020] EWCOP 21. [2021] EWCOP 50.

The relevant information Key to any assessment of capacity is the identification of the information relevant to that specific decision 2.9

The MCA states in s 3(4) that:

‘The information relevant to a decision includes information about the reasonably foreseeable consequences of— (a) (b)

deciding one way or another, or failing to make the decision.’

35

2.9  Consent & Capacity – Adults Per Lord Stephens in Re JB: ‘the court must identify the information relevant to the decision “within the specific factual context of the case”’.1 In respect of medical treatment decisions, the amount and complexity of information that must be understood will vary widely depending upon the illness or condition under consideration. For example, deciding whether or not to have a decayed tooth extracted will involve consideration of less detailed information than deciding whether to accept radiotherapy, chemotherapy or surgery for breast cancer. The threshold should not be set too high: it is not necessary to understand every last detail about the medical condition and treatment options. To be considered capable it is likely to be sufficient if the patient is able to understand in ‘broad terms’: ●● ●● ●● ●● ●● ●●

the nature of their diagnosis and prognosis; the nature and purpose of the proposed treatment; the anticipated benefits of treatment; the potential risks associated with treatment; the risks and benefits associated with not having the proposed treatment; any alternative treatment options and the risks and benefits of those.2

In Re JB,3 the Supreme Court held, contrary to the previously generally accepted view, that as relevant information must be identified within the factual context of the case, the ‘reasonably foreseeable consequences’ of making the decision were not necessarily limited to the foreseeable consequences for P, but could extend to consequences for other people. 1

Re JB [2021] UKSC 52 at para 70. And see B v A Local Authority [2019] EWCA Civ 913 at para 44, in which the Court of Appeal considered that where case law suggests a precedent guideline as to the information relevant to a particular decision, that must be ‘treated and applied as no more than guidance to be adapted to the facts of the particular case.’ 2 See Chapter 1: Consent – General, para 1.4: Risks of treatment; para 1.20: Duty of care – common law position. 3 Re JB (n1 above) at para 73.

Establishing capacity to consent, as opposed to obtaining ‘informed consent’ 2.10 There does, however, appear to be a distinct difference between the information that must be provided to a clinician to ensure the patient has given their informed consent to treatment, and the information that must be understood by a patient before they are assessed as having capacity to give informed consent. Case law strongly suggests the information threshold for establishing capacity is lower than for establishing informed consent. An assessment of capacity would not necessarily entail providing all the information a clinician would probably provide under Montgomery;1 as set out in Heart of England NHS Foundation Trust v JB: ‘What is required here is a broad, general understanding of the kind that is expected from the population at large. JB is not required to understand every last piece of information about her situation and her options: even her doctors would not make that claim.’2

36

Consent & Capacity – Adults 2.11 By way of comparison, in order to obtain informed consent from P a doctor must take reasonable steps to advise of the material risks associated with their recommended treatment and of any reasonable alternative or variant treatments available.3 The level of information required to obtain informed consent is, therefore, potentially more detailed and patient specific than that required under a capacity assessment. Such a low threshold approach to the ability to understand the relevant information sits against the background of a presumption in favour of capacity, and is an entirely logical approach when viewed in the context of the MCA. It is, however, entirely possible as a result that in some circumstances, P will be capable of giving consent to a particular treatment in broad terms, but will not in fact have given their informed consent to such treatment because of the limited information provided to them. This gives rise to a potential problem for any clinician who provides information which is sufficient for the purposes of a capacity assessment (as a result of which the patient is found to have capacity), but insufficient to satisfy Montgomery. This distinction has yet to be considered in the courts. Should a risk not deemed necessary under the ‘broad terms’ approach to be communicated then materialise, will that clinician have breached their duty of care to the patient; and if so, does that mean the information threshold needs to be raised to ensure informed consent is received? On the other hand, if more detailed information is in fact required, then are more individuals potentially going to be found to lack capacity when they otherwise would not have done? On any view, detailed consideration of what constitutes ‘relevant information’ is likely to be required where informed consent is an issue. In those cases where P is deemed to have capacity to consent to treatment, it does not automatically follow that their informed consent to such treatment has in fact been given and it may be the case that clinicians are under a further duty to provide additional information before confirming informed consent has in fact been obtained from a capacitous P. 1 2 3

Montgomery v Lanarkshire Health Board [2015] UKSC 11. For informed consent generally, see Chapter 1: Consent – General. [2014] EWHC 342 (COP). Montgomery (n1 above) at para 87.

The ‘limbs’ of the functional test in section 3 (a)  Understanding the relevant information 2.11

Section 1(3) states:

‘a person is not to be treated as unable to make a decision unless all practicable steps to help him have been taken without success.’ The assessment of capacity should be done, as far as practical, at the time and under the conditions which will give the person the best opportunity to understand, retain and weigh all relevant information. This might mean doing it at a particular time of day, ensuring that they have had optimum medication, or carrying out the assessment with the support of a family member or carer who may facilitate communication or provide necessary reassurance.

37

2.11  Consent & Capacity – Adults Section 1(3) has also been held to require the provision of sex education to assist an individual gain capacity to engage in sexual relations;1 the same may also apply to provision of appropriate information about contraception. Unlike the previous common law position, the MCA specifically requires that steps should be taken to enhance a patient’s capacity. Section 3(2) emphasises the need to facilitate understanding: ‘A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means).’ The steps which could be taken to help a patient understand the decision they are being asked to take, include: ●● ●● ●● ●● ●●

the use of simple language; the use of an interpreter so that the explanation can be given in the patient’s first language, or another intermediary, professional or informal; the use of sign language; the use of visual aids such as pictures, diagrams or anatomical models; treatment of an underlying medical condition to enable the person to regain capacity.2

A patient may be found to lack capacity if considered unable to understand the consequences of his decision either to comply with, or refuse, treatment for a serious physical condition. In Pennine Acute Hospitals NHS Trust v TM,3 the patient declined an urgent below-knee amputation that was considered necessary to avoid sepsis and life-threatening renal and cardiac failure. Hayden J observed: ‘… the presumption of capacity … is buttressed by the imperative not to treat a person as unable to make a decision merely because the outcome of their decision is unwise … ‘… However, it does not follow that the outcome of a decision is wholly irrelevant to the court’s assessment of capacity where a person’s ability to understand and weigh the consequences of a decision is in contention. ‘… on each occasion that [the patient] has been asked about amputation and treatment, he has declined it. He has consistently refused the procedure. But what is significant to my mind is the fact that, equally consistently, he has been unable to acknowledge the consequences of refusing treatment. Indeed, it is plain to me that he does not take on board those consequences or understand them; he simply insists that, in fact, he will get better without further treatment. This puts [the patient] in a fundamentally different position from a patient who, having understood that refusing treatment would very likely lead to their death, nevertheless considers this preferable to the consequences of receiving the treatment.’4 1 2 3 4

CH v A Metropolitan Council [2017] EWCOP 122. See MCA Code of Practice, para 2.7. Pennine Acute Hospitals NHS Trust v TM [2021] EWCOP 8 at paras 10, and 29–34. Ibid, paras 29, 30 and 32.

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Consent & Capacity – Adults 2.13

(b)  Retaining the relevant information 2.12 As capacity is specific to the decision to be made at the particular time, the information relevant to the decision need be retained only for as long as it takes for that particular decision to be made. MCA, s 3(3) states: ‘The fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision.’ Those with memory difficulties (such as early-stage dementia) will not necessarily be deemed incapable in respect of all decisions. However, the greater the complexity of the relevant information, the greater the degree of retention that will be required to hold it all in mind while weighing it up to decide. As with understanding, all practicable steps should be taken to help a person retain information and make a decision. It may be helpful to repeat the information on a number of occasions, perhaps using different members of staff. The Code of Practice also suggests that aids such as notebooks, posters, photographs, videos and voice recorders can be used to help people retain and record information.1 1

MCA Code of Practice, para 4.20.

(c)  Using and weighing the relevant information 2.13 Once the relevant treatment information has been understood and retained, the person must also be able to use and weigh the information in order to reach a decision. This is sometimes described as the ‘rational decisionmaking ability’ stage of the assessment. In PCT v P, AH and The Local Authority Hedley J described the ability to use and weigh information as ‘the capacity actually to engage in the decision-making process itself and to be able to see the various parts of the argument and to relate one to another’.1 The ability to use or weigh information does not always follow from the ability to understand and retain that information, or vice-versa. For example: ●●

●●

A person who suffers with anorexia nervosa may understand and retain all the information given as to the consequences of not eating and the physiological need for nutrition to survive. Nevertheless, that patient may be unable rationally to weigh up that information when deciding whether or not to eat, because their illness can engender an inappropriate focus on controlling and restricting calorific intake and the pursuit of extreme thinness, to the exclusion of other relevant factors. Likewise, a psychotically deluded patient who believes psychiatric medication will cause them to shrink will of course fail the ‘understanding’ stage of the capacity test, but they may well demonstrate the ability rationally to weigh information in the balance, when they declare they will not take their pills because they do not wish to become extremely small.

A recent example was the court finding in An NHS Trust v XB2 that a person lacked capacity to consent to antihypertensive medication due to an inability to weigh salient information: the patient was diagnosed with resistant 39

2.13  Consent & Capacity – Adults paranoid schizophrenia which meant he did not accept he had hypertension and was therefore unable to weigh the advantages and disadvantages of taking medication for that physical condition. 1 2

PCT v P, AH and The Local Authority [2009] EW Misc 10 (EWCOP), para 35. An NHS Trust v XB [2020] EWCOP 71 at para 8.

2.14 Within the context of the MCA, it is unnecessary for a person to use and weigh every detail of the respective options available in order to demonstrate capacity, providing they are able to use and weigh the salient factors.1 Whilst a person may be unable to use and weigh some information relevant to the decision in question, they may still be able to use and weigh other elements sufficiently to be able to make a capacitous decision.2 Nevertheless, something more than a superficial understanding appears to be required.3 In Re JB, Lord Stephens endorsed the statement by the Court of Appeal in a previous case that: ‘P’s ability under section 3(1)(c) MCA to use or weigh information relevant to the decision as part of the decision-making process “should not involve a refined analysis of the sort which does not typically inform the decision … made by a person of full capacity” … It would also derogate from personal autonomy to require a potentially incapacitous person to undertake a more refined analysis than persons of full capacity.’4 An inability to engage with the medical realities may suggest an inability to understand and weigh the information necessary to decide whether to consent to the treatment in question. It is not, however, an automatic conclusion and care will need to be taken to distinguish between those cases where P is genuinely unable to understand the medical realities, and those where P simply does not wish to engage with the medical profession and so wilfully refuses to demonstrate their ability to weigh the relevant information. The latter is a difficult case to identify but should not result in a finding of incapacity. The quality of a person’s decision making may also be quite nuanced, and hence may require careful consideration. Different people give weight to different factors and it should not be assumed that unless the individual gives the same weight to a factor as the assessor, they are unable to weigh the information adequately. In Kings College Hospital NHS Foundation Trust v C & V, MacDonald J stated: ‘Where a court is satisfied that a person is able to use and weigh the relevant information, the weight to be attached to that information in the decision making process is a matter for the decision maker. Thus, where a person is able to use and weigh the relevant information but chooses to give that information no weight when reaching the decision in question, the element of the functional test comprised by s 3(1)(c) will not be satisfied. Within this context, a person cannot be considered to be unable to use and weigh information simply on the basis that he or she has applied his or her own values or outlook to that information in making the decision in question and chosen to attach no weight to that information in the decision making process.’5 1 2 3

CC v KK and STCC [2012] EWHC 2136 (COP) at para 69. Re SB [2013] EWHC 1417 (COP). CC v KK (n1 above) at para 69.

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Consent & Capacity – Adults 2.16 4 5

Re JB [2021] UKSC 52 at para 77, citing In re M (An Adult) (Capacity: Consent to Sexual Relations) [2014] EWCA Civ 37 at para 81. Kings College Hospital NHS Foundation Trust v C [2015] EWCOP 80 at para 38.

(d)  Communicating the decision 2.15 The individual must also be able to communicate the decision which they have made. In practice this does not usually present problems. In Imperial College Healthcare An NHS Trust v MB, a young man who could only communicate by a system of blinking was considered to be ‘clear, eloquent, and entirely unambiguous in the communication of his wishes’.1 In Re AK (Adult Patient) (Medical Treatment: Consent) a young man who could only communicate by moving one eyelid was held to have capacity to make the decision to refuse any further medical treatment.2 1 2

[2019] EWCOP 30. [2001] 1 FLR 129.

Unwise or irrational decisions 2.16 A patient with capacity is not obliged to arrive at a rational decision: they are entitled to refuse treatment – and consent to it – for any reason, good or bad, rational or irrational. This is just as well, as many patients may consent to necessary and beneficial treatment on grounds that others may find entirely illogical or unjustified. In a similar vein, many patients may choose to smoke or drink alcohol to an extent that is ‘demonstrably injurious to health and potentially a risk to life’; and whilst objective consideration of smoking might logically indicate no rational person should smoke, people undoubtedly still do so, with no question over their capacity arising.1 This was the position at common law: where a prisoner intentionally cut his own leg, then contaminated the wound and refused medical treatment with the result that he was likely to contract septicaemia and die, the court refused to intervene.2 In Re T (Adult: Refusal of Treatment) Lord Donaldson of Lymington MR stated: ‘Prima facie every adult has the right and capacity to decide whether or not he will accept medical treatment, even if a refusal may risk permanent injury to his health or even lead to premature death. Furthermore, it matters not whether the reasons for the refusal were rational or irrational, unknown or even non-existent. This is so notwithstanding the very strong public interest in preserving the life and health of all citizens.’3 This principle is confirmed in s 1(4) of the MCA, which provides that: ‘A person is not to be treated as unable to make a decision merely because he makes an unwise decision.’ As Peter Jackson J stated in Heart of England NHS Foundation Trust v JB: ‘The temptation to base a judgment of a person’s capacity upon whether they seem to have made a good or bad decision, and in particular on whether they have accepted or rejected medical advice, is absolutely to be avoided. That would be to put the cart before the horse or, expressed another way,

41

2.16  Consent & Capacity – Adults to allow the tail of welfare to wag the dog of capacity. Any tendency in this direction risks infringing the rights of that group of persons who, though vulnerable, are capable of making their own decisions. Many who suffer from mental illness are well able to make decisions about their medical treatment, and it is important not to make unjustified assumptions to the contrary.’4 In An NHS Trust v P, Hedley J emphasised the importance of this principle and noted: ‘The intention of the Act is not to dress an incapacitous person in forensic cotton wool but to allow them as far as possible to make the same mistakes that all other human beings are at liberty to make and not infrequently do. ‘… It cannot be the case that merely because a person has significant difficulties in functioning in the community, it can be presumed that they lack capacity to make profoundly personal decisions. They may in fact do so but that has to be assessed on an individual basis.’5 All recent case law confirms the principle that a patient rejecting medical advice provided should not be considered to lack capacity simply because the decision they make is potentially catastrophic: ‘The healthy and moral human instinct to protect vulnerable people from unwise, indeed, potentially catastrophic decisions must never be permitted to eclipse their fundamental right to take their own decisions where they have the capacity to do so. Misguided paternalism has no place in the Court of Protection.’6 In Re JB, Lord Stephens said: ‘Legal capacity depends on the application of sections 2 and 3 of the MCA together with the principles in section 1. It does not depend on the wisdom of the decision. Furthermore, an important purpose of the MCA is to promote autonomy. That purpose aids the interpretation of sections 2 and 3 of the MCA. If P has capacity to make a decision then he or she has the right to make an unwise decision and to suffer the consequences if and when things go wrong. In this way P can learn from mistakes and thus attain a greater degree of independence.’7 1 2 3 4 5 6 7

Tower Hamlets v PB [2020] EWCOP 34, per Hayden J at para 14. Re W (Adult: Refusal of Treatment) (2002) EWHC 901 (Fam). Re T (Adult: Refusal of Medical Treatment) [1992] EWCA Civ 18, per Lord Donaldson of Lymington MR at para 37(1). Heart of England NHS Foundation Trust v JB [2014] EWHC 342 (COP) at para 7. An NHS Trust v P [2013] EWHC 50 (COP), per Hedley J at paras 10 and 16. Tower Hamlets v PB [2020] EWCOP 34, per Hayden J at para 51ii. Re JB [2021] UKSC 52 at para 51.

The assessment of capacity Key principles in determining capacity 2.17 The judgment in A Local Authority v RS (Capacity) helpfully sets out the cardinal principles to be applied in relation to the court’s determination

42

Consent & Capacity – Adults 2.17 of capacity, which should therefore be taken as the starting point for those assessing capacity.1 In summary: (a) (b) (c)

(d) (e) (f) (g)

(h)

(i) (j)

(k)

An individual is presumed to have capacity pursuant to s 1(2) of the MCA. The burden of proof lies with the person asserting a lack of capacity and the standard of proof is the balance of probabilities. The determination of the question of capacity is always decision specific. All decisions, whatever their nature, fall to be evaluated within the straightforward and clear structure of ss 1 to 3 of the MCA, which requires the court to have regard to ‘a matter’ requiring ‘a decision’. There is neither need nor justification for the plain words of the statute to be embellished. A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success (MCA s 1(3)). A person is not to be treated as unable to make a decision merely because he or she makes a decision that is unwise. The outcome of the decision made is not relevant to the question of whether the person taking the decision has capacity for the purposes of the MCA. In determining the question of capacity, the court must apply the diagnostic and the functional elements of the capacity test pursuant to ss 2 and 3 of the MCA. Thus: (i) There must be an impairment of, or a disturbance in the functioning of the mind or brain (the diagnostic test); and (ii) The impairment of, or disturbance in the functioning of the mind or brain must cause an inability to understand the relevant information, retain the relevant information, use or weigh the relevant information as part of the process of making the decision in question or to communicate the decision made. For a person to be found to lack capacity there must be a causal connection between being unable to make a decision by reason of one or more of the functional elements set out in s 3(1) of the Act and the ‘impairment of, or a disturbance in the functioning of, the mind or brain’ required by s 2(1) of the MCA. With respect to the diagnostic test, it does not matter whether the impairment or disturbance in the functioning of the mind or brain is permanent or temporary. With respect to the functional test, the question for the court is not whether the person’s ability to take the decision is impaired by the impairment of, or disturbance in the functioning of, the mind or brain but rather whether the person is rendered unable to make the decision by reason thereof. An inability to undertake any one of the four aspects of the decisionmaking process set out in s 3(1) of the MCA will be sufficient for a finding of incapacity provided the inability is because of an impairment of, or a disturbance in the functioning of, the mind or brain. The information relevant to the decision includes information about the reasonably foreseeable consequences of deciding one way or another.

In Kings College Hospital NHS Foundation Trust v R,2 the court considered that ‘the material time’ for the purposes of s 2(1), at which a person is to be 43

2.17  Consent & Capacity – Adults assessed as able or unable to make a decision, will be at the time of the hearing of the application for a declaration of incapacity. Whilst the evidence of psychiatrists is likely to be determinative of the issue of whether there is an impairment of the mind for the purposes of s 2(1), the decision as to capacity is a judgment for the court to make.3 1 [2020] EWCOP 29, citing Kings College Hospital NHS Foundation Trust v C & V [2015] EWCOP 80 at paras 25–39 and WBC v Z [2016] EWCOP 4. 2 [2019] EWCOP 46. 3 WBC v Z [2016] EWCOP 4. In this case, the court diverged from the expert opinion that P was unable to respond appropriately to risk. The court reiterated that whilst independent expert opinion is likely to be of considerable importance, the decision as to capacity is a judgment for the court to make.

The steps to be taken to assess capacity 2.18 What comprises ‘reasonable steps’ for the purposes of s 5 of the MCA, will depend upon the facts of each case. A doctor should undertake as full an assessment of capacity as possible in the circumstances, making a record in the patient’s clinical notes of the grounds which justify a reasonable belief of lack of capacity. As to who should undertake the assessment of capacity, Re F makes the important point that an initial assessment of capacity – in order to give the court jurisdiction to make initial directions under MCA s 48 – need not be from a psychiatrist or other specialist.1 It may well be appropriate and desirable for a general practitioner to provide at least an initial assessment (depending on the importance or complexity of the decision being made), so that the court can assume jurisdiction without delay.2 Arguably, any professional under a duty to know how to apply the MCA3 may be considered sufficiently qualified to assess capacity in the first instance that capacity might be doubted. However, depending on the importance of the decision being made, it may be wise to escalate any capacity assessment to a responsible doctor.4 In Wandsworth LBC v M,5 Hayden J considered that it was important that the voice of P was heard in the assessment. Whilst that is undoubtedly correct, what is required by the court will depend on all the circumstances of the particular case. In DA v DJ,6 Parker J considered that the evidence for s 48 purposes, at least, was capable of being provided by general practitioners and health professionals other than mental capacity specialists, not least to avoid delay, expense, and the risk that a vulnerable person would ‘slip through the net of protection’. In DA, whilst the court only had the family’s statements and text messages upon which to rely, reviewed by a consultant psychiatrist who had not seen P, Parker J considered that waiting to hear from P in such circumstances would create risks of delay, reduced co-operation and harm to P. Where any doubt remains as to capacity, it is suggested a specialist opinion should be sought, and consideration given to requesting a mental health professional, such as a psychiatrist or psychologist, to undertake a formal assessment of capacity, including capacity to conduct legal proceedings. If this is not possible before the interim order stage, applicant trusts should be ready to identify what further evidence could be provided to assist the court.

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Consent & Capacity – Adults 2.18 In deciding which clinician should provide the capacity assessment, aside from circumstances in which capacity is already clear, for example where the patient is minimally conscious, a capacity assessment from a mental health practitioner should be preferred and is likely to be required in order to satisfy the court. However, joint assessments, from a treating clinician as well as a mental health practitioner, are likely to provide the most comprehensive assessment, given the treating clinician may be the best source for the ‘relevant information’ P requires to make the specific decision. Further guidance as to what amounts to ‘reasonable steps’ to be taken to establish whether a person lacks capacity to make a decision, or to consent to an act at the time the decision or consent is needed, is given in the Code of Practice,7 and includes: ●● ●● ●● ●● ●●

considering whether the person has all the information on all the relevant options, needed to make the decision; considering whether the person’s understanding might be better at a different time of day, or in a different setting or on a different occasion altogether; considering whether the person’s understanding might be better if the information were presented differently; involving the person who lacks capacity by explaining what is happening and trying to help them make the decision in question;8 asking other people’s opinions where practical and appropriate (such as carers, close relatives, friends and others with an interest in the person’s welfare).

1

Re F [2009] EWHC B30 (Fam), per Her Honour Hazel Marshall QC at para 40: ‘There is a danger, with the current spotlight on the new and more sophisticated approach to mental capacity contained in the Act and the very extensive Code of Practice, that general practitioners will think that that they cannot or should not complete such an assessment for the court because of lack of supposed expertise – as happened in this case. This would be likely to lead to their declining to do so in the very cases which are problematic, because there is doubt whether the borderline has been crossed, between decisions which are the product of impaired powers of reasoning, or are merely eccentric unwise or unreasonable decisions in the opinion of others. It would be unfortunate if a conclusive specialist assessment came to be regarded as necessary before the court would accept jurisdiction at all.’ 2 Confirmed in DA v DJ [2017] EWHC 3904 (COP). As to the court’s interim jurisdiction under MCA s 48, see para 2.21 below and Chapter 6: Going to Court at para 6.39. 3 As the CQC guidance notes: ‘In the codes of practice, the people who decide whether or not a person has the capacity to make a particular decision are referred to as ‘assessors’. This is not a formal legal title. Assessors can be anyone – for example, family members, a care worker, a care service manager, a nurse, a doctor or a social worker. It is the responsibility of everyone who makes decisions on behalf of others to recognise their role and responsibilities under the code of practice.’ See CQC guidance A new system of registration: The Mental Capacity Act 2005: Guidance for providers (December 2011) at p 4: see bit.ly/CQC-MCADec-11: ‘Anyone may be in a position where they need to make an assessment of capacity. In particular, people working in health and social care services may find themselves having to assess someone’s capacity to make a decision. It is therefore vital that you have copies of the Act’s codes of practice available for relevant staff who may have to make such an assessment. It is also vital that your staff know about these, where they can find them, and how they affect their work.’ 4 See also E v London Borough of Hammersmith and Fulham and W [2021] EWCOP 7, in which the Court of Protection accepted a somewhat informal GP assessment of capacity performed by video as to whether P had capacity to make the decision of whether to accept a Covid-19 vaccination. 5 Wandsworth LBC v M [2017] EWHC 2435 (Fam) at para 65. 6 DA v DJ [2017] EWHC 3904 (COP).

45

2.18  Consent & Capacity – Adults 7 8

MCA Code of Practice, paras 4.36, 4.44 and 4.45. The importance of ascertaining P’s views was made clear by HHJ Hazel Marshall QC in Re S (Protected Persons) [2010] 1 WLR 1082 at paras 55 and 56; Hayden J in M v Mrs N [2015] EWCOP 76 at para 28; and Peter Jackson J in Wye Valley Trust v B [2015] EWCOP 60 at paras 10–18.

Guidance on the assessment 2.19 All practitioners should have in mind the recent guidance on the areas the Court of Protection expects an expert written assessment of capacity to cover, much of which is of equal relevance to assessments carried out by treating professionals. In AMDC v AG,1 Poole J set out a helpful checklist of the matters considered most beneficial when receiving written expert assessments of capacity under r 15 or s 49,2 namely: ●●

●●

●● ●●

●●

●● ●●

Experts should have particular regard to the terms of the MCA and Code of Practice, as well as their letter of instruction, as the purpose of the report is not to provide a clinical assessment but to assist the court to determine certain identified issues. The expert’s letter of instruction should identify the decisions under consideration, the relevant information for each decision, the need to consider both the diagnostic and functional elements of capacity, and the causal relationship between any impairment and the inability to decide. It would be helpful to use that as a structure for the report. It is important the parties and court can see on the face of the written report that the expert has understood and applied the fundamental principles in s 1 of the MCA. If asked to assess capacity in relation to more than one decision, broad brush conclusions are unlikely to be as helpful as specific conclusions as to the capacity to make each decision; and the opinions in relation to each decision should be consistent and coherent. The evidence and reasoning forming the basis of the expert’s opinion should also be explained; and any change of opinion on capacity following re-assessment or otherwise, ought to be accompanied by a full explanation as to why the conclusion has changed. The interview with ‘P’ (the person being assessed) need not be fully transcribed but if a particular exchange is relied upon then an account of what was said should be included. If P fails to engage with the expert, then the expert is not required to mechanically ask P about each and every piece of relevant information if to do so would be futile. However, the report should record the attempts made to assist P with engaging, and consideration should be given to liaising with others in order to formulate alternative strategies, or to provide bespoke education or support to promote P’s capacity or engagement.3

The higher the quality of the ‘in house’ assessments, the less likely it is that the court will find it necessary to direct the instruction of an expert to provide a report, save in the most complex cases where this is likely to be inevitable. For applicant Trusts, this means that ensuring a good quality assessment is provided at the outset of the case can both reduce costs and shorten the proceedings, which will be beneficial to all involved.

46

Consent & Capacity – Adults 2.20 Where it is necessary to instruct an expert, it is even more essential that the guidance is followed. In the same case, at a later stage, Poole J observed: ‘This case demonstrates how a thorough assessment and well-reasoned expert report on capacity can assist the resolution of difficult issues, saving time, resources and anguish’.4 In addition to the Court of Protection Rules relating to experts,5 it is also good practice for practitioners to ensure the expert is clearly instructed on both the matters to be assessed, and the manner in which the expert report needs to be structured and reasoned. All parties and the court are likely to have those considerations in mind when scrutinising the report. Any omissions may undermine the integrity of its conclusions and could lead to undue delay. 1 2 3 4 5

AMDC v AG and CI [2020] EWCOP 58 (18 November 2020). COPR 2017 r 15, or s 49 of the MCA. AMDC v AG (n1 above), para 28. AMDC v AG and CI (No 2) [2021] EWCOP 5 (22 January 2021), at para 1. COPR 2017 rr 14.24, 14.25 and 15, and Practice Direction 14E on s 49 reports.

Recording capacity assessments 2.20 Medical treatment decisions will frequently have an impact on the life (or death) of a person. There may be ramifications upon a person’s liberty even if the restriction or deprivation is only temporary. In some cases, a court will authorise sedation and restraint so that treatment can be provided. The provision of some types of treatment may lie against a person’s fundamentally held religious belief and could impact upon their standing within a family or society. For all these reasons, it will be important that assessments of capacity are recorded. The source of any information as to capacity should be queried and noted. In particular, it should not be assumed that medical staff (including psychiatrists) have focused on the necessary elements of capacity unless and until this has been expressly confirmed. The ability of the assessor to confirm such information will depend upon the urgency of any given situation. Detailed and accurate recording of a capacity assessment is always advisable. A note should be made of: ●● ●● ●● ●●

the circumstances of the assessment; the information which the assessor considers is relevant; any steps taken to aid understanding retention and weighing the information; and the reasons for concluding that the individual can or cannot understand, retain, use or weigh (as applicable) the relevant information.

Specific conditions may require further details. For instance, in the case of a patient with short-term memory loss caused by dementia, it would be prudent for the doctor assessing capacity to consent to treatment, to record in the patient’s medical records: ●● ●● ●●

the fact that the person was (or was not) able to retain the information for a short period or periods only; the reason for the short period of retention, if known; any objective evidence that the information has been retained long enough to allow the person to make the decision as to treatment. 47

2.21  Consent & Capacity – Adults

The court makes the decision 2.21 Once a case is before the court, it is the judge who decides whether a patient has capacity and is not bound to accept the medical evidence. Re SB1 concerned a 37-year-old IT specialist suffering from bipolar disorder for which she was medicated. She had been detained several times in the years preceding the hearing but denied suffering from mental illness. She had had one previous pregnancy that she had terminated, and the hearing arose because of a second planned pregnancy. She stopped taking her medication because she was worried about its effect on her unborn child. She began to suffer clear symptoms of her underlying disorder. At the end of her 23rd week of pregnancy she decided that she wanted a termination. SB suffered delusions about her husband and her mother. She attempted to attack her husband with a knife. The Trust sought urgent declarations as to her capacity and best interests. SB’s treating psychiatrist and an independent psychiatrist appointed by the Official Solicitor both concluded that she lacked capacity to decide whether or not to have a termination. Holman J heard evidence from her and concluded, notwithstanding the unanimous expert evidence and the history of delusional behaviour, first that SB had capacity to instruct her own solicitor (litigation capacity), and secondly, that she had capacity to decide whether or not to go ahead with the termination (the subject matter of the proceedings). He did so on the basis that although some of her reasons for wanting a termination were based on delusions, others were not: ‘It seems to me, therefore, that even if aspects of the decision making are influenced by paranoid thoughts in relation to her husband and her mother, she is nevertheless able to describe, and genuinely holds, a range of rational reasons for her decision. When I say rational, I do not necessarily say they are good reasons, nor do I indicate whether I agree with her decision, for section 1(4) of the Act expressly provides that someone is not to be treated as unable to make a decision simply because it is an unwise decision. It seems to me that this lady has made, and has maintained for an appreciable period of time, a decision. It may be that aspects of her reasons may be skewed by paranoia. There are other reasons which she has and which she has expressed. My own opinion is that it would be a total affront to the autonomy of this patient to conclude that she lacks capacity to the level required to make this decision.’2 At a preliminary stage, the court is not determining capacity, but considering the lower threshold of whether there is ‘reason to believe’ that P lacks capacity in relation to the matter at issue. In Re F,3 HHJ Marshall considered that the threshold for a s 48 declaration was lower than that required for final declarations pursuant to s 15: ‘What is required, in my judgment, is simply sufficient evidence to justify a reasonable belief that P may lack capacity in the relevant regard. There are various phrases which might be used to describe this, such as “good reason to believe” or “serious cause for concern” or “a real possibility” that P lacks capacity, but the concept behind each of them is the same, and is really quite easily recognised.’4 A different approach was taken by Hayden J in Wandsworth LBC v M,5 in which he stated: ‘There can be no doubt that the cogency and quality of evidence required to justify a declaration of incapacity, pursuant to Section 15, will be greater 48

Consent & Capacity – Adults 2.22 than that required to establish the interim test. However, it is important to emphasise that the presumption of capacity is omnipresent in the framework of this legislation and there must be reason to believe that it has been rebutted, even at the interim stage. I do not consider, as the authors of the “Mental Capacity Assessment” did that a “possibility”, even a “serious one” that P might lack capacity does justification to the rigour of the interim test. Neither do I consider “an unclear situation” which might be thought to “suggest a serious possibility that P lacks capacity” meets that which is contemplated either by Section 48 itself or the underpinning philosophy of the Act.’ Both cases were considered by Parker J in DA v DJ.6 Whilst neither case was binding on Parker J, she considered that the test for engaging the court’s powers to make interim orders and directions under s 48 of the MCA did indeed involve a lower threshold, as found by Judge Marshall in Re F, ie no more than ‘evidence giving good cause for concern that P may lack capacity in some relevant regard’; the standard of proof being a ‘serious possibility’. Most recently, in DP v London Borough of Hillingdon,7 Hayden J described the task for a judge considering s 48 thus: ‘At the core of Section 48 lies a balancing exercise in which the State’s obligation to promote and support autonomous adult decision taking must be weighed, on the particular facts of the individual case, against the State’s equally important duty to protect some of society’s most vulnerable individuals in circumstances of crisis. ‘The exercise required by Section 48 is different from that set out in Section 15. The former requires a focus on whether the evidence establishes reasonable grounds to believe that P may lack capacity, the latter requires an evaluation as to whether P, in fact, lacks capacity’.8 1 2 3 4 5 6 7 8

[2013] EWHC 1417 (COP). Ibid, para 44. Re F [2009] EWHC B30 (Fam). Ibid, para 36. [2017] EWHC 2435 (Fam) at para 65. [2017] EWHC 3904 (COP). [2020] EWCOP 45. Ibid, paras 61–62.

Temporary incapacity 2.22 Capacity may be lost temporarily.1 Obvious examples are intoxication or temporary unconsciousness. Less obviously, extreme panic or pain can result in a temporary loss of capacity, as can a phobia, precipitated by a specific stimulus. Such phenomena will not necessarily lead to incapacity, but they may do where they cause such a serious impairment or disturbance of mental functioning as to render a patient incapable of making a decision which has to be made at that time.2 In Re MB3 a woman with a needle phobia consented to a caesarean section, but – when she was exposed to the needle required for anaesthesia – her phobia led her subsequently to refuse the intervention. The Court of Appeal found that her refusal of treatment when in the grip of her phobia was the product of a temporary loss of capacity.

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2.22  Consent & Capacity – Adults However, as the concept of temporary incapacity allows for a degree of subjective judgment in emergencies, which could substantially undermine patient autonomy, doctors need to exercise considerable caution before providing treatment when a temporary phenomenon of this type gives rise to a loss of capacity, and temporary incapacity should not be used as an excuse to control a patient’s choices without their consent. Where a person’s incapacity is or may be temporary, s 1(3) of the MCA requires any person seeking to take a decision on behalf of another to consider: (a) (b)

whether it is likely that the person will at some time have capacity in relation to the matter in question; and if it appears likely that they will gain capacity, when that is likely to be.

Section 1(3) imposes a further obligation to ensure that all reasonably practicable steps are taken to permit and encourage a person to participate or improve their ability to participate, in any decision affecting them. While this is of general application, it has particular importance where there is a possibility that incapacity may be only temporary. In such circumstances it would be good practice to ascertain in advance and provide evidence of: ●● ●● ●● ●● ●● ●● ●●

the cause of the incapacity; how long the person has lacked capacity; whether this is an isolated event or a more frequent occurrence; whether the person’s ability to comprehend, retain, weigh up and communicate has deteriorated, improved or remained consistent and whether, absent any treatment, any change is anticipated; whether medical opinion suggests that any particular course of treatment might provide a return to capacity; if so, what sort of treatment is involved; how invasive would it be; what are the prospects of an improvement in capacity; and how long would it take before any improvement was likely to manifest itself; whether and, if so, how the underlying medical condition requiring treatment is likely to deteriorate while steps are being taken to provide the person with capacity.

It should be remembered that whilst pain might impair capacity, this is not the same as rendering the person unable to make the decision at all.4 It would undoubtedly alarm any woman in labour to be informed she might lose her freedom to make decisions about the management of that labour because of the pain it causes. Indeed, it is in just such circumstances that a patient most values the right to decide what should be done to her body. As Lady Hale stated in Montgomery: ‘Gone are the days when it was thought that, on becoming pregnant, a woman lost, not only her capacity, but also her right to act as a genuinely autonomous human being.’5 Over-reliance on temporary incapacity is dangerous and should be avoided if at all possible, by way of intelligent anticipation of the circumstances in which it might arise, and by carefully considering the likely duration of such incapacity, and the possibility of either putting off the decision until the patient can make it themselves, or of taking action less restrictive of the patient’s rights and freedom of action,6 pending the patient regaining or developing capacity. 50

Consent & Capacity – Adults 2.23 In cases where the loss of capacity is expected to be temporary, but the decision is urgent, it may not be practical to wait. In the case of East Lancashire Hospitals NHS Trust v GH,7 the patient’s agoraphobia, anxiety and depression and previous traumatic experience had influenced her preference for a home birth notwithstanding significant obstetric risk. Whilst the patient still had capacity, she agreed to be admitted to hospital for obstetric treatment if required, including a possible emergency caesarean section, but several hours after labour commenced, she changed her mind and insisted on remaining at home. An out-of-hours court hearing decided that the patient had now lost capacity due to agoraphobia and anxiety, and went on to conclude that it was in her best interests to be admitted, using reasonable force and gentle sedation if necessary. Whilst recognising compulsion was a grave step to take, the court placed significant weight on the fact that the patient’s capacitous wishes aligned with the court’s decision, and also represented the safest course for both mother and unborn child. However, the circumstances likely to provoke extreme pain, panic or even a phobia, are usually predictable, and the wishes of the patient in such an eventuality often can, and – whenever possible – should, be established at a time when calm and rational discussion is possible and the patient is more likely to have capacity. The discussion should address the possible treatment options, the reasons why the doctor considers the patient may lose capacity, and the risks involved. The patient’s capacitous wishes should be obtained in as much detail as possible and if appropriate, they should be supported to make an advance decision to refuse treatment.8 Although it is not possible to make such a decision to accept treatment, the patient’s capacitous decisions and wishes should be recorded in detail, with their reasons if possible. 1 2

MCA, s 2(2). Re MB (an adult: medical treatment) [1997] EWCA Civ 3093; and Code of Practice, para 4.12. For a detailed analysis see Chapter 12: Pregnancy and Childbirth. 3 Re MB (see n2 above). 4 Kings College Hospital NHS Foundation Trust v C [2015] EWCOP 80. 5 Montgomery v Lanarkshire Health Board [2015] UKSC 11 at para 116. 6 MCA, s 1(6). 7 East Lancashire Hospitals NHS Trust v GH [2021] EWCOP 18. 8 See para 2.32ff below.

Anticipated loss of capacity – Guy’s and St Thomas’s NHS Foundation Trust v R 2.23 In rare cases, where there is a real risk that the patient will lose capacity during the course of treatment, and will refuse necessary treatment at a point where there is no time to make an application to the court for a decision on their best interests, the court may be willing to grant a declaration contingent upon the patient’s loss of capacity, declaring that it will be in the patient’s best interests to have the treatment (usually, in accordance with a detailed care plan) at that future point, if it materialises. The position has been made clear in the leading case of Guy’s and St Thomas’s NHS Foundation Trust v R,1 in which Hayden J had to grapple with anticipated loss of capacity during labour, and in which he granted the application of two NHS Trusts for contingent declarations concerning obstetric care.

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2.23  Consent & Capacity – Adults The patient ‘R’ was a detained psychiatric patient, suffering from bipolar affective disorder and psychotic episodes. Although capacitous at the time the application was made, she was considered to be at substantial risk of losing capacity during labour due to a deterioration in her mental health (having ceased taking anti-psychotic medication). Whilst capacitous, she informed clinicians that a caesarean section would be the ‘last thing she would want’. An application was made seeking authorisation of medical intervention, should R lose capacity, which would be contrary to her expressed capacitous wishes. Hayden J accepted that the wording of s 15 of the MCA2 permits the court to make a declaration as to the lawfulness of any proposed treatment for P which is contingent on P losing capacity, even though at the point at which the declaration is made, P has capacity. At the point when the declaration is made, it is of no effect: it comes into effect if, and only if, P subsequently loses capacity to make the decision.3 Hayden J also accepted that the wording of s 16 of the MCA4 does not permit the court to make a similar decision contingent on a loss of capacity, since the entirety of s 16 is predicated upon P having already lost capacity.5 The effect of this is that any order authorising the deprivation of P’s liberty, which is expressed to come into effect only if P loses capacity in the future, must be made under the court’s inherent jurisdiction.6 Hayden J considered that such applications should be exceptional, rather than routine.7 Given the implications of making an application at a time when the patient has capacity to make the decision, we unhesitatingly agree. We suggest that such applications should only be made where there is a real risk that P will lose capacity in identifiable future circumstances, coupled with a real risk that they will then refuse treatment which is in their best interests at a point when there is insufficient time to bring the matter before the court. Clear clinical evidence should be provided to the court capable of providing a foundation upon which the court can find both risks are established. Evidence should be provided as to the discussions which have taken place with P, and the proposed care plan should as far as possible follow P’s capacitous choices; where it is proposed to depart from those capacitous choices, very clear reasons should be provided as to why the court should overrule them.8 Provision should be made in the order for the assessment of P’s capacity before any action is taken in reliance upon the declaration or order, to ensure that it is only implemented when it is effective. The declarations and orders made should be the least restrictive response to the circumstances, and clearly limited to the period in which capacity is lost. Considering the decision to override R’s capacitous wishes, and acknowledging the tension between the aims of preserving R’s autonomy and protecting a vulnerable patient, the court justified prioritising the latter, by reasoning that the court was ultimately protecting R’s opportunity to express a changed decision during what would be a highly dynamic medical procedure requiring constant re-evaluation. Hayden J said: ‘unlike her capacitous coeval, the mother, upon losing capacity, would lose the opportunity to express a changed decision. The birth process is, selfevidently, highly dynamic. It will frequently require obstetric re-evaluation.

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Consent & Capacity – Adults 2.23 With considerable diffidence, I suspect that many birth plans are changed, when confronted with the painful realities of a complicated labour. Many expectant mothers who may have vociferously disavowed epidurals re-evaluate this choice in labour. This is true of the whole gamut of obstetric options, including both induction and caesarean section. Accordingly, the strength and consistency of previously expressed views must be considered with intense subtlety and sensitivity in this highly uncertain and emotionally charged obstetric context. Thus, it seems to me, that I must balance my instinctive inclination to protect the autonomy of a woman’s control over the invasion of her own body, with my obligation to try to ensure that her options on losing capacity are not diminished.’9 The court considered that whilst a capacitous woman can make decisions about delivery which would include decisions which jeopardised her own life and welfare, or that of her foetus, the court did not have the same latitude, and ‘should not sanction that which it objectively considers to be contrary to P’s best interests’. A prospective mother’s best interests would rarely be served by permitting death or injury to an otherwise healthy and viable foetus.10 Hayden J considered that a properly constituted advance decision to refuse a caesarean section delivery, if made by a pregnant woman in a similar position (consciously waiving the right to change her mind on losing capacity), would have bound the court. Whilst in most cases, the Court of Protection will go to great lengths to reflect P’s identified wishes in decisions made after capacity is lost,11 he considered that in the instant case, P’s apparent capacitous view was simply insufficiently choate to be able to form a clear and unambiguous advance decision.12 Some may view this judgment as thinly veiled paternalism, caveated as dependent on the particular circumstances of the individual case. However, it may also be rationalised as the appropriate approach to dynamic medical procedures, where the decision-making process may be long and complex, ensuring that a patient’s entitlement to make choices after losing capacity is not diminished or inhibited. 1

Guy’s and St Thomas’s NHS Foundation Trust v R (CoP) [2020] EWCOP 4. The court heard detailed submissions following its decision as to the question whether, and if so to what extent, it was permissible to make a decision as to the best interests of a person who had capacity to make the decision at the time the application was made. Two previous decisions had addressed the issue under circumstances of urgency which had not permitted detailed argument: United Lincolnshire Hospitals NHS Trust v CD [2019] EWCOP 24, per Francis J; and Wakefield MDC and Wakefield CCG v DN and MN [2019] EWHC 2306 (Fam), per Cobb J. These two decisions must be read in light of the more authoritative decision of Hayden J. 2 Section 15(1)(c). 3 Guy’s and St Thomas’s (n1 above), paras 29, 32–36. 4 Section 16(1): ‘This section applies if a person lacks capacity in relation to a matter or matters concerning [their welfare]’. 5 Guy’s and St Thomas’s (n1 above), para 28. 6 Ibid, para 47. 7 Ibid, para 48. 8 In Guy’s and St Thomas’s itself, and United Lincolnshire Hospitals NHS Trust v CD, there was little opportunity to have such discussion; in Wakefield MDC and Wakefield CCG v DN and MN, by contrast, P was both involved in and fully supportive of the proposed care plan. 9 Guy’s and St Thomas’s (n1 above), para 57. 10 Ibid, para 63. 11 Ibid, para 33. 12 Ibid, para 65.

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2.24  Consent & Capacity – Adults

D CONSENT The absolute nature of an adult’s consent 2.24 The consent of a capable adult patient is always enough to justify a willing doctor providing lawful treatment. That consent cannot be challenged, whatever legal or moral claim to interest in the outcome another person purports to hold. Thus it is clearly established that the father of a foetus has no right to seek to prevent the mother consenting to termination of the pregnancy.1 The court cannot override a capable adult’s consent, if the proposed treatment would otherwise be lawful. 1

Paton v British Pregnancy Advisory Service Trustees [1979] QB 276; C v S [1988] QB 135; Paton v UK (1981) 3 EHRR 408. See Chapter 12: Pregnancy and Childbirth, para 12.2.

Treatment must be lawful 2.25 The mere demand by a patient for a particular treatment which the doctor is willing to give does not automatically render it lawful. Treatment will be considered unlawful if it is deemed so by statute; for example, a termination of pregnancy not authorised by the Abortion Act 1967.1 Further, treatment will be unlawful at common law if it is against public policy.2 Whilst public policy is more difficult to define, it may be thought for example, that amputation of a limb purely for a claimed psychological need would offend public policy. As a matter of general principle, any form of physical mutilation is unlawful unless it is for good reason. Obviously, bona fide medical treatment provides a lawful reason. However, consensual sadomasochistic practices leading to serious injury do not.3 While this is a problem unlikely to be encountered in routine medical practice, there may be questions over cosmetic treatment intended to disfigure the patient in some way that is considered unacceptable in the public interest. It is not easy to determine which activities fall on which side of the line, but consensual tattooing, even if undertaken by unqualified individuals, appears to be lawful.4 By contrast, significant surgical procedures of the type unlikely to be performed by a reputable surgeon, such as tongue splitting or removal of a nipple or part of an ear in circumstances where there is no discernible medical benefit, are likely to constitute a criminal offence of actual or grievous bodily harm – partly due to the need to be on the GMC specialist register in order to perform such surgery, but also ‘the underlying policy imperative that dictates that consent does not provide a defence to serious assaults of this nature’.5 This principle will have to be kept in mind when consideration is given to new and ethically controversial treatments such as advanced techniques for reproduction and cloning. 1 See Chapter 9: Abortion. 2 See, by way of analogy, R v Brown [1994] 1 AC 212. 3 Ibid; and see Chapter 1, para 1.9. 4 R v Brown (n2) and see R v Wilson [1997] QB 47, [1996] 3 WLR 125, [1996] 2 Cr App R 241, CA (Crim Div) (the accused branded his wife’s buttocks with his own initials at her instigation and with her consent: held that the action taken by the accused could be seen as similar to tattooing, which did not attract a criminal sanction). 5 See R v McCarthy (Brendan) [2019] EWCA Crim 2202 at para 56 for a discussion of the extent to which customers’ consent was deemed relevant to body modification, and see Chapter 1: Consent – General, para 1.9.

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Consent & Capacity – Adults 2.26

The obligation to treat in accordance with expressed wishes 2.26 Most of the cases coming before the courts involve patients who either refuse treatment or cannot consent to treatment being provided. Interesting questions arise where a competent patient makes it clear that they expect or require life-saving treatment to be provided in future. In Burke, the patient was suffering from a progressive degenerative disorder and sought clarification of the circumstances in which treating staff might lawfully withdraw artificial nutrition and hydration in the future. In dealing with a variety of complex issues, the Master of the Rolls noted: ‘We have indicated that, where a competent patient indicates his or her wish to be kept alive by the provision of [artificial nutrition and hydration] any doctor who deliberately brings that patient’s life to an end by discontinuing the supply of [artificial nutrition and hydration] will not merely be in breach of duty but guilty of murder. Where life depends on the continued provision of [artificial nutrition and hydration] there can be no question of the supply of [artificial nutrition and hydration] not being clinically indicated unless a clinical decision has been taken that the life in question should come to an end. That is not a decision that can lawfully be taken in the case of a competent patient who expresses the wish to remain alive.’1 The Court of Appeal however expressly endorsed the position of the GMC, which had made representations in the case, as follows: ‘The GMC is concerned that these passages suggest that a doctor is obliged, if the patient so requires, to provide treatment to a patient, or to procure another doctor to provide such treatment, even though the doctor believes that the treatment is not clinically indicated. No such general proposition should be deduced from Munby J’s judgment, nor do we believe that he intended to advance any such general proposition. So far as the general position is concerned, we would endorse the following simple propositions advanced by the GMC: i) The doctor, exercising his professional clinical judgment, decides what treatment options are clinically indicated (i.e. will provide overall clinical benefit) for his patient. ii) He then offers those treatment options to the patient in the course of which he explains to him/her the risks, benefits, side effects, etc. involved in each of the treatment options. iii) The patient then decides whether he wishes to accept any of those treatment options and, if so, which one. In the vast majority of cases he will, of course, decide which treatment option he considers to be in his best interests and, in doing so, he will or may take into account other, non-clinical, factors. However, he can, if he wishes, decide to accept (or refuse) the treatment option on the basis of reasons which are irrational or for no reasons at all. iv) If he chooses one of the treatment options offered to him, the doctor will then proceed to provide it. v) If, however, he refuses all of the treatment options offered to him and instead informs the doctor that he wants a form of treatment which the doctor has not offered him, the doctor will, no doubt, discuss that form of treatment with him (assuming that it is a form 55

2.26  Consent & Capacity – Adults of treatment known to him) but if the doctor concludes that this treatment is not clinically indicated he is not required (i.e. he is under no legal obligation) to provide it to the patient although he should offer to arrange a second opinion.’2 The MCA does not provide the courts with any power to order a doctor to provide something which he does not consider to be clinically indicated.3 The court cannot order treatment to be provided to someone without capacity that would not be provided to someone with it. Patients cannot use the MCA to ask the court to order treatment where there are no doctors who are either willing or able to provide treatment. In AVS,4 P suffered from vCJD, a rare, progressive and fatal disease. For two years P had been treated with a pump that injected a compound (PPS), but his condition deteriorated. The pump failed and the Trust concluded that P was in a near vegetative state and further treatment was futile. There was no hospital in the UK where treatment could be provided and there were no clinicians prepared to provide the ongoing treatment in the UK even if the pump could be replaced. Notwithstanding those significant practical difficulties, P’s brother sought a declaration that it was in P’s best interests for the pump to be replaced. The Court of Appeal dismissed an appeal from the decision of Wall J. Ward LJ said: ‘A declaration of the kind sought will not force the respondent hospital to provide treatment against their clinicians’ clinical judgment. To use a declaration of the court to twist the arm of some other clinician, as yet unidentified, to carry out these procedures or to put pressure upon the Secretary of State to provide a hospital where these procedures may be undertaken is an abuse of the process of the court and should not be tolerated … ‘… If there is no-one available to undertake the necessary operation the question of whether or not it would be in the patient’s best interests for that to happen is wholly academic and the process should be called to a halt here and now.’ 1

2 3 4

R (on the application of Oliver Leslie Burke) v GMC [2006] QB 273, [2005] 3 WLR 1132 at para 53. This raises the question whether such a wish would compel doctors to provide treatment they considered futile to someone who was in PVS but had expressed a wish – or is thought would wish – to remain alive (for example for religious reasons). This was discussed but not answered conclusively in Burke. n1 above, para 50. Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, Lady Hale at para 18. AVS v An NHS Foundation Trust [2011] EWCA Civ 7, see paras 38–39.

E REFUSAL 2.27 It is the corollary of the right to authorise treatment that there is a right to refuse it. To the extent that the right to refuse treatment is denied, so is the autonomy of the individual.1 A refusal may be for any reason, good or bad, or for no reason at all. The fact that the refusal is considered by others to be irrational or morally repugnant in no way invalidates it or avoids the need to respect it.2

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Consent & Capacity – Adults 2.28 As MacDonald J stated in Kings College Hospital NHS Foundation Trust v C:3 ‘To introduce into the assessment of capacity an assessment of the probity or efficacy of a decision to refuse life-saving treatment would be to introduce elements which risk discriminating against the person making that decision by penalising individuality and demanding conformity at the expense of personal autonomy in the context of a diverse, plural society which tolerates a range of views on the decision in question (see Mental Incapacity (1995).’4 The only qualification to the right to refuse treatment is that a refusal cannot be used as a backdoor method of insisting on treatment which the doctor is unwilling to provide. No doctor, and no health authority, can be required to provide a patient with treatment which is not clinically indicated and is not considered by them to be in the patient’s interests.5 Thus, a patient who is advised to have a treatment consisting of two inseparable elements cannot, if consenting to only one element, require the doctor to provide that one element.6 This does not excuse the treating doctor from dealing with the patient as he finds him. If he starts a treatment with the patient’s consent, and the consent is subsequently withdrawn, the treatment cannot proceed, and the doctor must provide whatever proper treatment the patient allows him to undertake in order to ameliorate the position. A patient who refuses a blood transfusion which is needed for an operation to proceed cannot be forced to have the operation or the transfusion, and conservative treatment must be resorted to, even though, in the opinion of the surgeon, surgery is the best treatment. 1

S & S; W v Official Solicitor (or W) [1972] AC 24, HL at 43 per Lord Reid: ‘The real reason is that English law goes to great lengths to protect a person of full age and capacity from interference with his personal liberty. We have too often seen freedom disappear in other countries not only by coups d’état but by gradual erosion: and often it is the first step that counts. So it would be unwise to make even minor concessions.’ 2 St George’s Healthcare NHS Trust v S [1999] Fam 26, CA and Re W (Adult: Refusal of Treatment) [2002] EWHC 901 (Fam) where a secure prisoner who intentionally cut his own leg and kept it open by forcing objects into it was found to have capacity to refuse treatment notwithstanding that he was likely to contract septicaemia and die. 3 Kings College Hospital NHS Foundation Trust v C [2015] EWCOP 80 at para 30. 4 (Law Comm No 231) (HC 189), [1995] EWLC 231, para 3.4. 5 Re J (A Minor) (Child in Care: Medical Treatment) [1993] Fam 15; R (Burke) v General Medical Council [2006] QB 273 at paras 31, 50, 51 and 55. For further discussion of Burke see Chapter 18: The End of Life, paras 18.24–18.25. 6 See Chapter 1: Consent – General, para 1.6. See also the case of An NHS Trust v CX [2019] EWHC 3033 (Fam), in which the High Court held it was lawful for doctors to treat a ‘Gillick competent’ 14-year-old Jehovah’s witness against his wishes. The child consented to chemotherapy for his otherwise fatal lymphatic cancer, but would not consent to the use of blood products, without which chemotherapy would be rendered unsafe, and there was no alternative to chemotherapy.

Capacitous decisions to refuse treatment that may accelerate death 2.28 Competent patients occasionally take capacitous decisions to refuse treatment and thereby accelerate or cause death.1 Although medical staff can have difficulty accepting the patient’s autonomous right to take these decisions, the law is clear. In B v An NHS Hospital Trust,2 B suffered an intracranial haemorrhage which caused her to be admitted to hospital. She was warned of the possibility of 57

2.28  Consent & Capacity – Adults a further bleed and took the decision to prepare a ‘living will’ asking that treatment be withdrawn if she was subsequently admitted suffering from any life-threatening condition, mental impairment or permanent unconsciousness. Her condition improved and she was discharged. She later suffered a dramatic deterioration, was admitted and then put on a ventilator. She made a second living will. In the course of proceedings, the President took evidence from B, found her ‘a most impressive witness’ and determined that at all material times she had capacity. It followed that the hospital’s treatment of her had been unlawful and she was entitled to damages, although in the circumstances only a very modest sum was awarded. Clinicians who are required by a patient to withhold treatment may have concerns that, by complying with those wishes and advancing death, they are either assisting the patient to commit suicide or guilty of murder. Following the decision in the case of Ms B those concerns were raised less frequently, but clinicians may still struggle to accept what they consider to be an unwise decision to refuse life sustaining or life-saving treatment. 1 See Chapter 17: Treating Suicidal Patients. 2 [2002] EWHC 429 (Fam), [2002] Lloyd’s Rep Med 265.

Case of Ms C 2.29 In Kings College Hospital NHS Foundation Trust v C & V1 an NHS Trust sought a declaration that C lacked capacity to take decisions about her medical care and treatment. She had ‘led a life characterised by impulsive and self-centred decision-making without guilt or regret’ and was ‘a person who seeks to live life entirely, and unapologetically on her own terms; that life revolving largely around her looks, men, material possessions and “living the high life”’. Her life, however, had taken a downward trajectory, moving away from what she described as her ‘sparkly’ lifestyle. She was diagnosed with cancer and underwent a traumatic breakdown of a relationship. She attempted to commit suicide by taking 60 paracetamol tablets with champagne. She survived but sustained a severe kidney injury. After initial treatment, C refused to undertake further haemodialysis despite her doctor indicating that restoration of kidney function was very likely. MacDonald J ruled that C had the mental capacity to decide whether or not to consent to the life-saving treatment that her doctors wished to continue to give her. The judge stressed that: ‘The fact that a decision not to have life-saving medical treatment may be considered an unwise decision and may have a fatal outcome is not of itself evidence of a lack of capacity to take that decision, notwithstanding that other members of society may consider such a decision unreasonable, illogical or even immoral, that society in general places cardinal importance on the sanctity of life and that the decision taken will result in the certain death of the person taking it. To introduce into the assessment of capacity an assessment of the probity or efficacy of a decision to refuse life-saving treatment would be to introduce elements which risk discriminating against the person making that decision by penalising individuality and demanding conformity at the expense of personal autonomy in the context of a diverse, plural society which tolerates a range of views on the decision in question.’2 The Trust accepted that C’s situation was finely balanced, sitting ‘close to the border that runs between an individual with capacity making an unwise 58

Consent & Capacity – Adults 2.29 decision and an individual lacking capacity to make the decision in question’, but submitted that she was someone who lacked the capacity to decide whether or not to receive dialysis on the basis that due to a narcissistic personality disorder she was unable to use and weigh information relevant to the decision as part of the process of making that decision. The Trust contended that C lacked belief in, and was unable to use and weigh, her positive prognosis: she was unable to contemplate ‘a future that includes her recovery, having closed her mind to this’; and that this inability to use and weigh information was because of ‘the impairment of, or a disturbance in the functioning of, the mind or brain’ for the purposes of s 2(1) of the MCA due to her personality disorder. Thus the Trust submitted that C’s decision to refuse treatment was not reached ‘with significant using and weighing of information demonstratively ending with a balanced, nuanced, used and weighed position constituting a capacitous but objectively assessed unwise decision’. MacDonald J ‘in this difficult case’ rejected those submissions, holding that the Trust had not proved on a balance of probabilities that C was ‘unable to use and weigh the information relevant to the decision’. Despite there being a number of occasions when C had appeared to reject out of hand her positive prognosis, the judge determined that viewing the evidence as a whole was indicative of C acknowledging that there was a possible future in which she survived and of her weighing that information in the decision-making process. It was important not ‘to confuse a decision by C to give no weight to her prognosis having weighed it with an inability on her part to use and weigh that information’.3 Importantly, in assessing her ability to weigh information, MacDonald J noted that C had given a range of reasons for not wishing to continue her treatment, including in particular her fear of living the rest of her life on dialysis. MacDonald J concluded that: ‘The decision C has reached to refuse dialysis can be characterised as an unwise one. That C considers that the prospect of growing old, the fear of living with fewer material possessions and the fear that she has lost, and will not regain, “her sparkle” outweighs a prognosis that signals continued life will alarm and possibly horrify many, although I am satisfied that the ongoing discomfort of treatment, the fear of chronic illness and the fear of lifelong treatment and lifelong disability are factors that also weigh heavily in the balance for C. C’s decision is certainly one that does not accord with the expectations of many in society. Indeed, others in society may consider C’s decision to be unreasonable, illogical or even immoral within the context of the sanctity accorded to life by society in general. None of this however is evidence of a lack of capacity. The court being satisfied that, in accordance with the provisions of the Mental Capacity Act 2005, C has capacity to decide whether or not to accept treatment C is entitled to make her own decision on that question based on the things that are important to her, in keeping with her own personality and system of values and without conforming to society’s expectation of what constitutes the “normal” decision in this situation (if such a thing exists). As a capacitous individual C is, in respect of her own body and mind, sovereign.’4 1 [2015] EWCOP 80. 2 Ibid, para 30. 3 Ibid, at para 86. Ms C’s ability to weigh, and ultimately dismiss her prospects of survival, can be contrasted with the inability of the anorexic P in Northamptonshire Healthcare NHS

59

2.29  Consent & Capacity – Adults

4

Foundation Trust v AB [2020] EWCOP 40 to weigh the information on whether she should be tube fed at all. In that case, the court found that P’s decisions on her food intake were so influenced by her need to avoid weight gain at all costs that true logical reasoning in relation to those matters was beyond her capacity or ability. Ibid, para 97.

Obstetric treatment in the interests of a viable foetus no exception 2.30 It has long been established that the competent adult patient’s right to personal freedom from physical invasion extends to cases where the exercise of that freedom may prejudice the well-being of a viable foetus.1 A competent expectant mother with capacity can refuse treatment, even where this might lead to the death or serious injury of her or the unborn baby. Nevertheless, the physical and psychological best interests of the mother often coincide with the best interests of the foetus in being born healthy. To that extent, the unborn child may in practice benefit from a doctrine of ‘double effect’ in the case of a mother who lacks capacity to make decisions about her obstetric care and the arrangements for the delivery of her baby, if a decision taken to safeguard the mother’s best interests incidentally results in treatment being provided which ensures the safe delivery of a healthy child. 1

Re MB (Caesarean Section) [1997] EWCA Civ 3093 and St George’s Healthcare NHS Trust v S [1998] 3 WLR 936. See Chapter 12: Pregnancy and Childbirth.

F  CHANGE OF MIND 2.31 An adult with full capacity is entitled to withdraw consent already given, at any time before the treatment concerned has been provided. Even if the treatment has started, and the patient retains capacity, he may demand that it be stopped.1 While, as stated above, the doctor cannot be required to leave a patient in an unacceptable state, it is doubtful whether a doctor can insist upon finishing a procedure if a patient still possessing full capacity requires him to stop after the procedure commences but before it has finished. For a withdrawal of consent to have effect it is necessary for it to be communicated to the person providing treatment. A surgeon who continues to operate in ignorance of a withdrawal communicated to a junior doctor on the ward is unlikely to attract personal liability, although the junior doctor, and their employer, most certainly will – for a breach of the duty of care to the patient.2 Withdrawal of consent will also depend upon patient capacity, which may well be affected by sedation or other medication given prior to or during a procedure. Thus where a patient demands that treatment which has been started should be stopped, an assessment of capacity may be required if the treating clinician considers capacity is in doubt. It is suggested the right to withdraw consent is therefore not absolute, and may be overruled where the effects of discontinuing treatment are life-threatening or pose a serious risk to the patient’s health, and the patient cannot understand or weigh up those effects once treatment is underway.3 1

Ciarlariello v Schacter [1993] 2 SCR 199: the claimant suffered an adverse reaction following a diagnostic cerebral angiogram and sued the doctor for battery, having asked him to stop during the procedure. Cory J stated: ‘An individual’s right to determine what medical

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Consent & Capacity – Adults 2.34

2 3

procedures will be accepted must include the right to stop a procedure. It is not beyond the realm of possibility that the patient is better able to gauge the level of pain or discomfort that can be accepted or that the patient’s premonitions of tragedy or mortality may have a basis in reality. In any event, the patient’s right to bodily integrity provides the basis for the withdrawal of a consent to a medical procedure even while it is underway. Thus, if it is found that the consent is effectively withdrawn during the course of the procedure then it must be terminated.’ Re J (A Minor) (Child in Care: Medical Treatment) [1993] Fam 15. See also Chapter 1: Consent – General, para 1.37.

G  ADVANCE DECISIONS General principle 2.32 Consent is often given in advance of the proposed treatment. In the case of surgery under general anaesthetic, it has to be. Equally, it is possible for a patient to express a present intention to refuse treatment in specified circumstances. There is now no doubt that if certain conditions are fulfilled, doctors and others are bound in law to comply with such statements. In other words, to proceed with treatment prohibited by a valid and applicable advance decision is unlawful, and renders those providing the treatment liable to a charge or claim for assault and battery. However, as set out above, a person cannot force medical professionals to give a specific treatment and an advance decision cannot be used for this purpose. That said, any request made in advance to be provided with specified treatment should, of course, be taken into account in any best interests decision pursuant to MCA s 4(6)(a).1 1 This is of particular importance in relation to the ongoing debate about a mother’s ability to request a caesarean section delivery. NICE guidance on caesarean section has recently been changed to state at para 1.2.30: ‘If a vaginal birth is still not an acceptable option after discussion of the benefits and risks and offer of support (including perinatal mental health support if appropriate …), offer a planned caesarean birth for women requesting a caesarean birth.’ and at para 1.2.31: ‘If a woman requests a caesarean birth but her current healthcare team are unwilling to offer this, refer the woman to an obstetrician willing to perform a caesarean birth’ (Caesarean birth, NICE guideline (NG192) published: 31 March 2021: see bit.ly/NICE-Caesarean-NG192).

Advance decisions under the MCA 2.33 Sections 24–26 of the MCA give statutory recognition to advance decisions refusing treatment (‘ADRT’), and specify the conditions which must be fulfilled before such a decision is considered valid and applicable. An advance decision is a decision to refuse specified treatment in the future which is to have effect if the person making the advance decision lacks the capacity to consent to or refuse treatment at that point in the future.

Validity 2.34 ●● ●● ●●

To be valid, an advance decision1 must: be made by a person aged 18 or over; be made at a time when a patient has capacity; specify the treatment which is to be refused.2 61

2.34  Consent & Capacity – Adults It is not necessary to specify the treatment covered by the advance decision in medical language3 nor is it necessary to specify the circumstances in which the refusal is to apply, although s 24(1) of the MCA provides that this ‘may’ be done. Although not expressed in the Act, it must follow that there must have been no vitiating influence such as duress, undue influence or fraud.4 A person may withdraw or alter an advance decision at any time when he has capacity to do so and such a withdrawal (including a partial withdrawal) or alteration need not be in writing unless the alteration relates to an advance decision refusing life-sustaining treatment.5 An advance decision is not valid: ●● ●●

●●

if withdrawn while the patient has capacity; if the patient creates a lasting power of attorney after the advance decision has been made, and in that lasting power of attorney, the patient confers authority on a donee to give or refuse consent to the specified treatment to which the advance decision relates; if the patient has done anything else clearly inconsistent with the advance decision.6

In HE v A Hospital NHS Trust,7 a woman who suffered from a congenital heart problem had made an advance decision refusing blood products at a time when she was a practising Jehovah’s Witness. She had subsequently become engaged to a Muslim and was professing that she would live by the principles of that faith when she was taken seriously ill and rushed to hospital. Her father applied to the court for an order that the hospital give her a blood transfusion in order to save her life, as the advance decision no longer reflected her intentions. Munby J held that: ‘Since it is quite clear that the Advance Directive was founded entirely on [HE’s daughter’s] AE’s faith as a Jehovah’s Witness – that is made clear beyond argument by the very terms of the Advance Directive itself – it seems to me that it cannot have survived her deliberate, implemented, decision to abandon that faith and to revert to being a Muslim. When the entire substratum has gone, when the very assumption on which the advance directive was based has been destroyed by subsequent events then, as Lord Donaldson put it in In re T, “the refusal ceases to be effective”. The advance directive ceases to have effect, whether or not expressly revoked by the patient. AE’s rejection and abandonment of her faith as a Jehovah’s Witness deprives the Advance Directive of any continuing validity and effect …’8 Although the decision predates the implementation of the MCA, it remains a useful example of behaviour which would almost certainly be found inconsistent with the advance decision and so invalidate an advance decision made under the Act. 1 See para 9.5 of the MCA Code of Practice, which states ‘People can only make advance decisions to refuse treatment. Nobody has the legal right to demand specific treatment, either at the time or in advance. So no-one can insist (either at the time or in advance) on being given treatments that healthcare professionals consider to be clinically unnecessary, futile or inappropriate.’ 2 MCA, s 24(1). 3 MCA, s 24(2). 4 See Chapter 1: Consent – General, paras 1.30–1.33 for a discussion of factors vitiating consent.

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Consent & Capacity – Adults 2.35 5 MCA, s 24(3), (4) and (5); and the NHS’ guide for health and social care professionals is a useful reference: see NHS, Advance Decisions to Refuse Treatment, January 2013, updated 7 December 2017: bit.ly/NHS-ADRT-2013. 6 MCA, s 25(2). 7 HE v A Hospital NHS Trust [2003] EWHC 1017 (Fam), [2003] 2 FLR 408. 8 Ibid, para 49.

Applicability 2.35 ●● ●● ●● ●●

An advance decision is not applicable if: the patient retains capacity to give or refuse consent to the specified treatment at the time it is provided; the treatment in question is not that specified in the advance decision; any circumstances which have been specified in the advance decision are absent; there are reasonable grounds for believing circumstances exist which the patient did not anticipate at the time of the advance decision and which would have affected the patient’s decision had those circumstances been anticipated.1

Further specific safeguards have been provided by s 25(5) and (6) of the MCA for advance decisions applicable to life-sustaining treatment. These provide that the decision must: ●● ●● ●● ●●

include a statement by the patient that it is to apply to the treatment specified even if life is at risk; be in writing; be signed by the patient or another person in the patient’s presence and by the patient’s direction; and be witnessed.2

The Code of Practice also highlights that the life-sustaining treatment may depend on the circumstances in which treatment is being given; an example being that treatment with antibiotics may be life-sustaining in some situations but not others. An advance decision can also validly refuse artificial nutrition and hydration (ANH) but cannot validly refuse basic or essential care, namely actions required to keep the patient comfortable, such as warmth, shelter and hygiene and the offer of food and water by mouth.3 A doctor or any other person, who reasonably believes an advance decision is valid and applicable to treatment, does not incur liability if the treatment is withheld or withdrawn in accordance with that decision.4 It is vital that all practitioners ensure that all reasonable steps are taken to appropriately record a patient’s wishes and to record any valid advanced decision within the MCA, particularly if it is likely that a patient’s decision will conflict with medical advice. 1 2

MCA, s 25(3) and (4). In the case of An NHS Trust v D [2012] EWCOP 885, [2012] EWHC 886 (COP), although the patient had provided a clear advance decision to refuse treatment that meant treatment should be withdrawn if he were to enter a persistent vegetative state, he was unfortunately unaware the advance decision to refuse treatment needed to be signed by the patient and a witness in each other’s presence, in order to comply with s 25 of the MCA, leading to a nine-month delay before the court was able to accede to the Trust’s (unopposed) application to withdraw treatment.

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2.35  Consent & Capacity – Adults 3 4

MCA Code of Practice, paras 9.25–9.28. MCA, s 26(3).

2.36 Provision is made for the court to make a declaration as to the existence, validity and applicability of an advance decision.1 Importantly, nothing in an advance decision stops a person from providing life-sustaining treatment or doing any act he reasonably believes to be necessary to prevent a serious deterioration of a patient’s condition while a decision in respect of ‘any relevant issue’ is sought from the court.2 The principle behind s 26(5) is that where there is genuine doubt, either about a patient’s capacity to have made an advance refusal of treatment, or about whether the terms of an advance decision are sufficiently specific, then the paramount consideration will be preservation of life and health pending the court’s determination of the issue. Section 26(5) is unqualified and so will allow treatment apparently inconsistent with the terms of an advance decision to be given in an emergency situation pending determination by the court as to the existence, validity or applicability of that advance decision. It therefore begs the question whether the mere issue of proceedings can change the status of such treatment; to allow for example, giving a blood transfusion to a cardcarrying Jehovah’s Witness, and thereby render lawful what would otherwise be unlawful. If strictly construed, this may well be the case. However, this would be difficult to reconcile with basic common law principles and the thrust of the MCA, which is to safeguard the fundamental principle of personal autonomy or self-determination. Where there is any doubt as to the validity and applicability of an advance decision the appropriate course would be to make an emergency application to the court. Where the prescribed procedural requirements are absent, the court has demonstrated its flexibility, in the pursuit of making decisions in P’s best interests. In the case of Barnsley Hospital NHS Foundation Trust v MSP,3 the patient had signed a detailed, albeit unwitnessed, document containing his advance wishes almost four months before he found himself sedated and ventilated in circumstances in which his ‘Advance Directive’ might have taken effect. It was considered the document was procedurally deficient and ‘not binding as an Advance Decision …’ but ‘nonetheless represents a clear and eloquent expression of MSP’s wishes and feelings’, and hence guided the court in evaluating MSP’s ‘best interests’ regardless of the procedural deficiency. This was also the approach taken by the hospital Trust in Newcastle-uponTyne Foundation Trust v LM,4 where an urgent application was made for a declaration that it was lawful to withhold blood transfusions from a gravely ill Jehovah’s Witness where no material advance directive had been made. During her admission to hospital, it was known that LM was a Jehovah’s Witness and she had expressed a wish not to receive blood products. Although a form to complete an advance decision complying with MCA s 24 was available at the hospital, it does not appear to have been offered to LM. The only record of her wishes was that recorded in her notes by the clinical team. Peter Jackson J granted the application and in his judgment, handed down a few hours after LM had died, he stated: ‘LM made a decision that the doctors rightly considered must be respected … If LM had not made a valid, applicable decision, I would have granted the 64

Consent & Capacity – Adults 2.37 declaration sought on the basis that to order a transfusion would not have been in her best interests.’ It would appear that Peter Jackson J considered LM’s decision to refuse blood transfusion to be a binding advance decision notwithstanding the fact that it did not comply with the terms of MCA s 25(5) and (6). The judgment is clearly consistent with the principle that decisions should be made through the prism of a protected person’s likely or actual wishes (as endorsed by the Supreme Court in Aintree University Hospitals NHS Foundation Trust v James5) and is likely to be indicative of the approach the courts will adopt in future. 1 2 3 4 5

MCA, s 26(4). MCA, s 26(5). Barnsley Hospital NHS Foundation Trust v MSP [2020] EWCOP 26. [2014] EWHC 454 (COP). [2013] UKSC 67.

Advance decisions and MHA s 63 2.37 There remains potential for tension between the MCA and the MHA, in cases where P has made a valid Advance Decision to refuse treatment, but clinicians consider there is a power to treat them under s 63 of the MHA. This may arise where treatment is regarded as being for the mental disorder from which P is suffering. In Nottinghamshire Healthcare NHS Trust v RC,1 an application was made to the court for declarations that it was lawful not to provide a blood transfusion to a Jehovah’s Witness even though there was a power to do so under s 63 of the MHA. Mostyn J found that RC had full capacity to refuse blood products and had made a valid advance decision to that effect. He stated: ‘it would be an abuse of power in such circumstances even to think about imposing a blood transfusion on RC having regard to my findings that he presently has capacity to refuse blood products and, were such capacity to disappear for any reason, the advance decision would be operative. To impose a blood transfusion would be a denial of a most basic freedom.’2 In RC that tension was decided in favour of supporting P’s autonomy by declaring it lawful under the court’s inherent jurisdiction for the clinicians not to give P blood transfusions in accordance with P’s Advance Decision, even though clinicians had the power to lawfully treat him under s 63 of the MHA. In contrast, in JK v A Local Health Board,3 the court considered that although JK had capacity to refuse food and medical treatment, and had made a valid advance decision to refuse treatment, it was lawful to treat him under s 63 of the MHA, as his refusal was effectively a symptom or manifestation of his autism. The court was unable to go so far as to say the clinicians should provide compulsory treatment given the treatment plan had yet to be drawn up; a full merits review was still required by the court at that stage. The manner in which the court in a similar case would weigh up any decision using the required test, of whether it was ‘appropriate’ for compulsory treatment to take place (as is the test under s 63, rather than the test of best interests under the MCA), in the presence of a valid Advance Decision, has therefore yet to be tested in court, and may be the subject of much debate. 65

2.37  Consent & Capacity – Adults 1 Nottinghamshire Healthcare NHS Trust v RC [2014] EWHC 1317 (COP). 2 Ibid, para 42. At para 11, Mostyn J cited the decision of Newcastle-upon-Tyne Foundation Trust v LM [2014] EWHC 454 (COP) with approval. 3 JK v A Local Health Board [2019] EWHC 67 (Fam); see also A Healthcare B NHS Trust v CC [2020] EWHC 574 (Fam). See Chapter 3: Deciding for Others – Adults, para 3.4.

Form 2.38 An advance statement may be oral or in writing, save where the decision is applicable to life-sustaining treatment when it must be in writing as specified in ss 25 and 26 of the MCA. There is no legal requirement as to form, so long as the conditions of validity and applicability referred to above are met. It is obviously prudent for any patient wishing to ensure their wishes are respected, to record their intentions in writing and give a copy of the document to any doctor likely to be treating them in the future, and also to their general practitioner. Any doctor receiving such a document should ensure a copy is lodged with the patient’s records, and that all doctors who may be treating the patient are informed. While any form of words will suffice if it makes the intentions of the patient clear, many patients will want to be offered some form on which they can indicate their choices. Chapter 9 of the Code of Practice provides a list of suggested information which could be included in a written advance decision at para 9.19, as follows:1 ●● ●● ●● ●● ●● ●●

full details of its maker, including date of birth, home address and any distinguishing features (so that – for instance – an unconscious person might be identified); the name and address of general practitioner and whether they have a copy; a statement that the document should be used if the maker lacks capacity to make treatment decisions; a clear statement of the decision, the treatment to be refused and the circumstances in which the decision will apply; the date the document was written (or reviewed); and the person’s signature (or that of the person signing in their presence on their behalf) and the signature of a witness (if there is one).

Further guidance can also be obtained in the NHS guide for health and social care professionals on Advance Decisions to Refuse Treatment.2 Whilst some flexibility exists, as noted above, to give purposive effect to the MCA, the court has been keen to emphasise the importance of compliance with both the statutory provisions and the Codes of Practice when preparing an Advance Decision, as Hayden J stated in Cumbria CCG v Rushton: ‘Manifestly, these are documents of the utmost importance; the statute and the codes provide essential safeguards. They are intending to strike a balance between giving proper respect and recognition to the autonomy of a competent adult and identifying the risk that a person might find himself locked into an advance refusal which he or she might wish to resile from but can no longer do so. The balance is pivoted on the emphasis, in the case of life-sustaining treatment, given to compliance with the form specified by statute and codes.’3 66

Consent & Capacity – Adults 2.40 Those advising on making an Advanced Decision may wish to keep in mind the extent to which a Lasting Power of Attorney might serve as a useful alternative, less likely to fall foul of the many requirements under the MCA and its Code of Practice. 1 MCA Code of Practice, at paras 9.18–9.21. This guidance was specifically endorsed by Theis J in The X Primary Care Trust v XB [2012] EWHC 1390 (Fam) at para 34, and by Hayden J in NHS Cumbria CCG v Rushton [2018] EWCOP 41 (21 December 2018), at para 16. 2 For a form for advance medical decisions, see: p 31 of NHS’s Advance decisions to refuse treatment: A guide for health and social care professionals: bit.ly/NHS-ADRT-2013. See also para 2.42 below, regarding the use of pro-formas. 3 NHS Cumbria CCG v Rushton [2018] EWCOP 41 (21 December 2018) at para 25.

Informed refusal? 2.39 Where consent is obtained for treatment the doctor will be under a duty to warn the patient of the risks involved.1 Failure to do so may invalidate the consent obtained, and render the doctor liable in negligence. It is unclear to what extent similar concerns apply to advance refusals. Is an advance decision invalid where a patient expresses an advance refusal to specific treatment under a mistaken belief as to the risks and benefits of treatment, either due to the patient failing to ask any qualified person for advice or due to receiving erroneous advice? For example, an advance decision may be signed because of a false rumour relayed by a friend that a particular form of treatment was dangerous, without having discussed the matter with a relevant qualified healthcare professional. In a similar vein, a person with strong religious beliefs may hold views as to the effects of certain types of treatment quite at odds with the opinions of the medical profession. There is unfortunately no direct authority on the point. However, in applying s 25(4) of the MCA, it is arguable that an advance decision to refuse treatment made under a mistaken belief as to the facts should be held invalid – if there are reasonable grounds to believe the patient had not anticipated at the time the decision was made, the ‘correct’ circumstances that currently exist, and had those circumstances been anticipated when the decision was being made, they would have affected the decision.2 However, to override an advance refusal on this ground would be to deny the individual’s right to make decisions for himself on whatever information he chooses to base them. If, therefore, any doctor ignores an advance decision due to being aware that the advance decision was made under a mistaken belief as to the risks and benefits of treatment, they may still expose themselves to criticism. In view of the uncertainty, it would seem essential to seek a court declaration before proceeding with treatment. It does appear however, that it ought not be difficult to persuade the court in such circumstances, that the advance refusal did not cover the factual situation facing the doctor, particularly if failing to treat will result in death. 1 See Chapter 1: Consent – General, paras 1.4, 1.20–1.29. 2 MCA, s 25(4)(c).

Knowledge 2.40 In order for an advance decision to be effective, in practice, the doctor confronted with the incapacitated patient must obviously be aware of its existence. It has been suggested above that patients wishing to make such 67

2.40  Consent & Capacity – Adults statements should ensure they are in writing and disseminated to all those likely to need to know about them. What action should doctors take when presented with a patient and they do not know whether an advance decision has been made? Section 4(6)(a) MCA requires that when considering what action is in an incapable person’s best interests one must consider, so far as is reasonably ascertainable— ‘the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity).’ Therefore any doctor proposing to treat an incapacitated patient is obliged by law to make reasonable enquiries into their previous wishes and this will include whether a formal advance decision has been made. What is reasonable will depend on the nature of the patient’s condition and the proposed treatment. It is more easily anticipated that some patients will be reluctant to accept treatment for certain conditions, for example radical surgery to palliate an inevitably fatal cancer, than for others. Greater efforts to establish whether the patient has left any statement may therefore be required in such a case than in a case of more routine care. Section 26(2) of the MCA now allows a doctor to raise as a defence to any charge of assault the assertion that he acted in good faith in ignorance of an advance refusal of treatment. However, it is suggested that it remains incumbent on doctors and health managers to have in place systems which minimise the chance of an advance decision being missed. It is sometimes considered that the risks involved in treating in ignorance of an advance decision may be lower than not providing treatment to an ill person at all, because damages for the former could never be more than nominal. This is however incorrect: first, to treat in such circumstances could potentially lead to criminal charges; secondly, if the act were held unlawful, damages would be at large and could arguably be assessed on the basis that the injury was the invasive treatment itself.1 Further, where the treatment gave rise to complications, even non-negligent ones, there may be a right to compensatory damages not only in tort, but also for any breach of Art 8 of the ECHR that may justify damages under s 8 of the Human Rights Act 1998.2 1 In Malette v Shulman [1991] 2 Med LR 162, a Jehovah’s Witness was in an accident. She had a card requesting no blood transfusions, which was shown to the treating doctor. Nonetheless he administered blood transfusions to the patient. The transfusion probably saved her life, and she made a good recovery from her injuries. The Ontario Court of Appeal affirmed the first instance judge’s determination that the doctor’s actions constituted an assault and that the award made of $20,000 was appropriate (about $34,000 or £20,000 at today’s rates). Whilst aggravated damages are not permitted in a claim in negligence, they are permitted in an action for trespass to the person (that is battery), as in the case of W v Meah [1986] 1All ER 935 (the first reported civil action for rape); Richardson v Howie [2004] EWCA (Civ) 1127 (a claim for assault and battery); and Appleton v Garrett [1996] PIQR P1 (an action for trespass to the person where the patients’ dentist performed unnecessary treatment). 2 Although at the time of writing, it is unclear whether or not the Independent Human Rights Act Review, which reported in December 2021, will result in the Human Rights Act continuing in substantially the same form or with the ability for redress curtailed: bit.ly/Hmg-HR-review.

Duration 2.41 In theory, an advance decision is of indefinite duration. In practice, its life will be limited by the requirement that it is intended to cover circumstances 68

Consent & Capacity – Adults 2.43 as they exist at the time treatment is being considered. Many such statements are intended to cover specific illnesses and so will expire if the patient fails to develop the feared condition or recovers from it unexpectedly. The emergence of new forms of treatment may also invalidate the advance decision. Accordingly, patients who make advance decisions should be advised of the need to review them on a regular basis, preferably in conjunction with their general practitioner or another appropriate medical adviser. Where pro-forma documents are used to record an advance decision, in line with the guidance given by Theis J in The X Primary Care Trust v XB & YB,1 careful consideration should be given as to whether these should include ‘valid until’ dates. In XB a valid and applicable advance decision would, on its face, have been automatically brought to an end by a ‘valid until’ date which had been automatically entered on the form without any discussion with XB and without his consent. Theis J, however, found on the evidence before her that XB had not intended to time-limit his decision and was able to make a declaration that the advance decision was properly made and was not time-limited. 1

[2012] EWHC 1390 (Fam) at para 35.

Records 2.42 The Court of Appeal has made clear that, for their own protection, health authorities and doctors should seek unequivocal assurances in writing that a refusal represents an informed and settled decision and that the patient understands the nature of the proposed treatment, the reasons for it being recommended, the risks, and likely prognosis involved in the decision to refuse it.1 Where the patient is not prepared to provide such a written assurance, a careful record must be made of the advice given to the patient about the need for treatment and the risks of refusing it, together with the patient’s reasons for refusal. Similarly, where there are any doubts as to whether an individual has capacity when making an advance decision to refuse treatment, particularly life-sustaining treatment, ‘a full, reasoned and contemporaneous assessment evidencing mental capacity to make such a momentous decision would in my view be necessary’2 and this should be recorded in writing to avoid the possibility of future doubt. 1 2

St George’s NHS Healthcare Trust v S [1999] Fam 26, [1998] 3 WLR 936. A Local Authority v E [2012] EWCOP 1639, per Peter Jackson J at para 65.

H CONCLUSION 2.43 While it has always been well established that an adult lacking capacity cannot give valid consent to treatment, the MCA places a renewed emphasis on the autonomy of the patient and imposes a clear requirement to involve patients and those close to them in the decision-making process in relation both to medical treatment and to the assessment of capacity (where this is in doubt). Clinicians must undertake reasonable steps to establish whether a patient has capacity to make a specific decision. If legal proceedings arise, the courts will assess assiduously whether practical steps have in fact been taken in a particular 69

2.43  Consent & Capacity – Adults case to enhance the patient’s capacity.1 If they have not, this will have serious ramifications for clinicians and hospital Trusts alike. It is therefore important that protocols are put in place in hospitals to guide healthcare workers through steps which can be taken with more challenging patients who may traditionally have been treated in a paternalistic fashion. Trusts would be well advised to seek input from organisations such as Mencap, the Mental Health Foundation, Mental Health UK, and MIND on how better to communicate with such patients. The goal should be to ensure that, where capacity to take a particular decision is present, it is genuinely respected regardless of the preconceptions that may be held about certain ‘types’ of patient. 1

MCA, s 1(3).

For updating material and hyperlinks related to this Chapter, see www.serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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Chapter 3

Deciding for Others – Adults

A B

C

The court’s jurisdiction  3.1 The historical context  3.2 General rules  3.3 General rule 1: A capacitous adult’s wishes must be respected  3.3 Exception: Mental Health Act 1983, s 63  3.4 Case law on the MHA  3.5 General rule 2: There is only limited proxy of consent for others  3.9 General rule 3: There is a power under the MCA to treat in an incapacitous person’s best interests  3.10 Doctrine of necessity  3.11 Decision making for adults under the MCA  3.12 Principles 3.12 Determination of best interests – overview  3.13 Holistic/wider best interests  3.14 ‘Analysis of Competing Issues’  3.15 The focus on the patient  3.18 P’s wishes and feelings, beliefs and values  3.21 Independent Mental Capacity Advocates  3.22 Consultation with other people  3.23 DNAR Notices  3.24 Sharing information  3.25 Interests of others  3.26 Financial interests  3.27 Experimental and controversial treatment  3.28 End of life – intolerability and dignity  3.29 The sanctity of life – a starting point  3.30 Advance decisions  3.31 Scope of power to treat  3.32 The power of the Court of Protection to consent to treatment  3.33 Covert administration of medication and deceit  3.34 Deception and P’s Article 8 rights  3.36 Covert insertion of contraceptive devices?  3.37 Does P need to be told he has been covertly medicated?  3.38 Covid-19 vaccination case law  3.39 Where vaccination not in P’s best interests  3.40 ‘Booster’ shots  3.41

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3.1  Deciding for Others – Adults D The court’s powers under its inherent jurisdiction relating to vulnerable adults 3.42 E Conclusion 3.45

A  THE COURT’S JURISDICTION 3.1 Traditionally, the High Court exercised its inherent jurisdiction when making declarations or orders in relation to medical treatment issues.1 However, on 1 October 2007 the Mental Capacity Act 2005 (‘MCA’)2 came into force and provided a statutory framework to assist with the decisionmaking process for people who lack capacity. The provisions of the MCA extend far beyond medical and treatment decisions alone, but it should now be the starting point for anyone approaching the issue of medical treatment decision making in adults. The MCA must be read in conjunction with the Mental Capacity Act 2005 Code of Practice (‘the Code’),3 which provides a useful explanation of the principles and of the suggested approach to the consideration and assessment of the relevant issues. The way in which the MCA impacts upon individual aspects of the decisionmaking process is explored in greater detail below, as is the impact of case law including the Supreme Court’s analysis of best interests in Aintree.4 The specific issue of deprivation of liberty under the MCA is dealt with in Chapter 5: Restraint and Deprivation of Liberty. The substantial body of case law addressing decision making for others before the MCA is still relevant in the post-MCA world. This reflects the fact that the MCA essentially codified and developed, rather than re-wrote, existing principles. This is not to downplay the profound impact of the MCA, which has been extensive and significant in both health and social welfare practice. The Court of Appeal has expressly confirmed that the MCA has done nothing to oust the court’s pre-existing inherent jurisdiction over vulnerable adults who fall outside the scope of the MCA.5 1 Section 19 of the Senior Courts Act 1981 (‘SCA’) and s 19(2)(b) confirm that the civil jurisdiction it exercised prior to the SCA coming into force was to continue. 2 Amended by the Mental Health Act 2007. 3 Last updated on 14 October 2020: bit.ly/MCA-Code. 4 Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, [2014] AC 591. 5 However, the inherent jurisdiction is now better considered as the power of the High Court to make declarations and orders to protect adults who may have mental capacity to make relevant decisions – and to whom the MCA does not extend – but who are nevertheless vulnerable for other reasons, such as the undue influence of other people. The description of the jurisdiction as ‘the great safety net,’ was originally used by Lord Donaldson MR in In re F (Mental Patient: Sterilisation) [1990] 2 AC 1 at 13, but is still apposite to describe the jurisdiction of the High Court to fill the gaps left by the MCA. See Paras 3.42–3.45 below.

The historical context 3.2 Before embarking on a more detailed analysis of the court’s approach to decision making on behalf of adults, it is worth considering briefly the speed with which the law has advanced in this area. In Airedale NHS Trust v Bland,1 the House of Lords was asked to consider for the first time whether it was lawful to withdraw nutrition and hydration from an adult patient in a persistent 72

Deciding for Others – Adults 3.2 vegetative state. Tony Bland was an 18-year-old Liverpool supporter who was injured in the Hillsborough disaster at Sheffield Wednesday’s football ground on 15 April 1989. He suffered compression asphyxia and was unconscious on admission to the Northern General Hospital that day. Treatment of patients in either persistent vegetative (‘PVS’) or minimally conscious states (‘MCS’) was not then well advanced and there were few clinicians with any relevant experience. One of those was Dr Howe, a consultant geriatrician at Airedale Hospital in Liverpool. Airedale was relatively close to Tony’s family and he was transferred there for treatment. In August 1989, Dr Howe contacted the local Coroner. It was by then already clear that Tony was in a PVS, he was totally unaware of anything going on around him and he had no chance of making any form of recovery. Dr Howe advised that he might well live for many more years but that he would be wholly incapable of deriving any pleasure or benefit and would instead suffer the indignity of procedures and treatment that would keep him alive without conferring any quality of life. He advised that artificial nutrition and hydration (‘ANH’) and ventilatory support be withdrawn so that Tony could die peacefully. The family supported his decision. The Coroner warned that if ANH were withdrawn and resulted in Tony’s death, there was a very real risk that the clinicians involved could be charged with murder. The Hospital Trust brought an application before the High Court seeking a declaration that it might lawfully discontinue all life sustaining treatment. Sir Stephen Brown (P) granted the application at first instance. The Official Solicitor appealed first to the Court of Appeal and then to the House of Lords where the original decision was upheld. Judgment was handed down by the House of Lords on 4 February 1993, treatment was withdrawn and Tony Bland died on 3 March 1993 nearly four years after sustaining his initial injury. In the modern world, decisions such as this can be taken in weeks rather than years, avoiding years of uncertainty for families and, in some cases, of futile treatment for those patients who would never have wished to receive it. In these uniquely important decisions, the quality of the available evidence is critical to the court’s decision-making. Furthermore, the law has progressed today to a position whereby, in cases where there is agreement between all those concerned with P’s welfare, there is no mandatory requirement, either under the common law or the European Convention on Human Rights (‘ECHR’), for a court order to be obtained before clinically assisted nutrition and hydration, which is keeping P alive, can be withdrawn. In most cases, as long as the provisions of the MCA and the relevant guidance are followed, and there is agreement on what is in P’s best interests, P can be treated in accordance with that agreement without application to the court.2 The position illustrates the significant developments in the law and practice in this area since Bland. The fundamental question facing a doctor, or a court, considering treatment of a patient who is not able to make their own decision is not whether it is lawful to withdraw or withhold treatment, but whether it is lawful to give it.3 It is lawful to give treatment only if it is in the patient’s best interests. If a doctor carries out treatment in the reasonable belief that it will be in the incapacitous patient’s best interests, they will be entitled to the protection from liability conferred by s 5 of the MCA. 1

[1993] AC 789, [1993] 2 WLR 316.

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3.2  Deciding for Others – Adults 2 3

An NHS Trust v Y [2018] UKSC 46, [2019] AC 978. See Serious Medical Treatment, Guidance [2020] EWCOP 2, see bit.ly/VP-Guide-Jan-20 and Chapter 6: Going to Court at paras 6.2–6.7. Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67 at 601 at para 20ff.

B  GENERAL RULES General rule 1: A capacitous adult’s wishes must be respected 3.3 As set out in Chapter 2,1 when considering whether a decision on medical treatment falls to be taken by or for an adult, the starting point is to determine whether they have capacity. If an adult is found to have capacity to make a decision on medical treatment, regardless of how wise or unwise a patient’s decision may appear to others, there is no general power to impose or withhold treatment contrary to their choice.2 The only exception is treatment for a mental disorder provided under the Mental Health Act 1983 (‘MHA’). 1 See Chapter 2: Consent & Capacity – Adults. 2 See Re B (Consent to Treatment: Capacity) [2002] Lloyd’s Rep Med 265. And see further Chapter 14: Religious Observance and Objections to Treatment, where a patient’s refusal to accept treatment for religious reasons, including a blood transfusion, is discussed.

Exception: Mental Health Act 1983, s 63 3.4 The isolated exception to the autonomy that competent patients enjoy over the way in which they are to be treated is contained within s 63 of the MHA which provides: ‘The consent of a patient shall not be required for any medical treatment given to him for the mental disorder from which he is suffering, not being treatment falling within section 57 or 58 above, if the treatment is given by or under the direction of the responsible medical officer.’ Section 63 of the MHA should be read in conjunction with s 145(4) which provides that medical treatment under the MHA means medical treatment ‘the purpose of which is to alleviate or prevent a worsening of the disorder or one of more of its symptoms or manifestations.’ In A Healthcare B NHS Trust v CC,1 Lieven J rejected the contention that for treatment to fall within s 145(4), the primary cause of the condition requiring treatment must be the mental disorder, saying: ‘As with any mental disorder or mental illness and its link to physical illhealth, causation and the link between the mental and physical condition is intensely complex and not really amenable to a primary cause analysis. … ‘… It is in my view sufficient that a purpose of the proposed treatment is to alleviate a manifestation of the mental disorder.’2 The dialysis in question fell within ss 63 and 145(4) as it was treating a manifestation of CC’s personality disorder: the need for the dialysis stemmed from self-neglect (leading to kidney failure), which was itself a consequence of his mental disorder. The fact that he would agree to dialysis when well 74

Deciding for Others – Adults 3.6 supported the conclusion that his refusal was a manifestation of his mental disorder. A positive decision to impose non-consensual medical treatment pursuant to s 63 is a public law decision and can be susceptible to judicial review.3 1 2 3

[2020] EWHC 574 (Fam). Ibid, paras 36–37. JK v A Local Health Board [2019] EWHC 67 (Fam) at para 66.

Case law on the MHA 3.5 In PS,1 the patient (PS) suffered from schizophrenia but it was common ground that he had capacity to refuse treatment. Silber J determined that it was lawful under the MHA for him to receive psychotropic medication, despite PS’s competent refusal to accept the treatment. Such treatment without a patient’s consent under the MHA will not amount to an infringement of the patient’s rights under Arts 3, 8 and 14 of the ECHR where the treatment has been convincingly shown to be medically necessary.2 1 2

R (on the application of PS) v G (Responsible Medical Officer) [2003] EWHC 2335. See also R (B) v SS [2006] EWCA Civ 28, [2006] 1 WLR 810. R(N) v M [2003] 1 WLR 562 at para 19 per Dyson LJ.

3.6 Section 63 will not only permit treatment for the core mental disorder, but may also cover treatment for physical symptoms consequent upon the mental disorder despite capable refusal of the same. In B v Croydon Health Authority,1 the Court of Appeal concluded that relieving the symptoms of the mental disorder is just as much a part of treatment under s 63 as relieving its underlying cause and force feeding by tube did constitute ‘medical treatment’ for the purposes of s 63. The High Court has recently concluded that dialysis could be provided without consent to a patient under s 63 because his refusal of dialysis was a manifestation of his mental disorder.2 Pursuant to the powers under s 63, an anorexic patient may be force fed and the wound of someone who self-harms as a consequence of a personality disorder may be sutured. ‘Whether a matter is a symptom of the mental disorder will be entirely fact-sensitive and section 63 does not give doctors carte blanche to treat detained patients however they wish. When treating a person detained under the MHA, it must be remembered that section 63 only allows for treatment without consent if it is the disease or condition being treated that is a consequence of the mental disorder. It does not matter if a refusal to be treated is a consequence of the mental disorder, although patients in such a position may be treated via the MCA if their capacity is called into question on the grounds that, for example, schizophrenic delusions mean they cannot use or weigh information.’3 1 [1995] Fam 133, [1995] 1 All ER 683 following In re KB (Adult) (Mental Patient: Medical Treatment) (1994) 19 BMLR 144 at 146 and Riverside Mental Health NHS Trust v Fox [1994] 1 FLR 614 at 619. 2 A Healthcare B NHS Trust v CC [2020] EWHC 574 (Fam). See also JK v A Local Health Board [2019] EWHC 67 (Fam) where refusal of food and medical treatment was considered to be a symptom or manifestation of the patient’s autism, discussed at para 3.8 below and in Chapter 13: Feeding, para 13.27. 3 Re C (A Minor (Medical Treatment: Court’s Jurisdiction) [1997] 2 FLR 180.

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3.7  Deciding for Others – Adults 3.7 Clinicians considering whether to treat under s 63 should however bear in mind what was said in A NHS Trust v Dr A,1 where one question raised was whether s 63 could be used to force feed an Iranian doctor who was suffering from a delusional disorder, and who had gone on hunger strike in the belief that his doing so would persuade the UK Border Agency to return his confiscated passport back to him. Baker J agreed with the applicant trust that it could not force-feed him, saying: ‘… it is generally undesirable to extend the meaning of medical treatment under the MHA too far so as to bring about deprivation of liberty in respect of sectioned or sectionable patients beyond what is properly within the ambit of the MHA … In case of uncertainty, where there is doubt as to whether the treatment falls within section 145 and section 63, the appropriate course is for an application to be made to the court to approve the treatment. That approach ensures that the treatment given under section 63 of the MHA will be confined to that which is properly within the definition of section 145 as amended. It would help to ensure that patients with mental disorders are, so far as possible, treated informally rather than under section. Finally, it ensures compliance with Article 8 and provides the patient with a more effective remedy than would otherwise be available, namely a forensic process to determine whether the treatment is in his best interests.’2 Furthermore, just because treatment can be provided under s 63, that does not mean it should always be provided. In Nottinghamshire Healthcare NHS Trust v RC,3 the court considered the lawfulness of the administration of a blood transfusion to a Jehovah’s Witness who had self-harmed as a result of a personality disorder. The treating clinician, Dr S, had expressed concerns about using s 63 powers to ‘override a capacitous patient’s wishes based on religious wishes’ and ‘would not choose to use (her) MHA powers to override his advanced [sic] decision.’4 The court held that whilst the administration of the blood transfusion could amount to treatment within the meaning of s 63, it would be an abuse of power to do so where the patient had capacity to refuse. The court emphasised that the duty to save life was subservient to the right of sovereignty over one’s own body. 1 2 3 4

[2013] EWCOP 2442. Ibid, para 80. [2014] EWCOP 1317. Ibid, para 41. See Chapter 2: Consent & Capacity – Adults, where an advance decision has been made.

paras

2.32ff for the position

3.8 In the case of JK v A Health Board,1 Lieven J was faced with an application in respect of future possible treatment for JK. Specifically, the Health Board was seeking a declaration that it would be lawful for JK to be force fed under s 63 and, in the alternative, under the inherent jurisdiction. Lieven J considered that the refusal to eat was a manifestation of JK’s mental disorder, autism, and, as such, fell within s 63. She held that such a question is primarily a medical one. However, she was clear that that did not mean she was accepting that force feeding would be in JK’s best interests or that treatment would fall within the definition of s 145(4). If it came to that stage, Lieven J considered that the test of medical necessity, the terms of Art 3 of the ECHR and the case of Herczegfalvy v Austria2 would all fall to be considered. If JK refused to eat once the treatment plan had been drawn up, and the Health Board 76

Deciding for Others – Adults 3.10 decided to use s 63, then the matter would need to be restored to the court. This could be done either by way of judicial review, or by giving JK liberty to apply, if needed, in the order drawn up at the end of the present proceedings. Finally, it is worth noting that where a court finds that s 63 can be used to provide medical treatment to P, it will be unnecessary for the court to exercise its discretion to make a contingent declaration pursuant to s 15(1)(c) of the MCA that it is lawful to treat P in accordance with the treatment plan, in the event P lacks capacity at the relevant time.3 1 2 3

[2019] EWHC 67 (Fam). [1993] 15 EHRR 437. A Healthcare, B NHS Trust v CC [2020] EWHC 574 (Fam) at para 56.

General rule 2: There is only limited proxy of consent for others 3.9 There is a frequently held misconception that the incapacitous patient’s next of kin has an overriding right to decide on medical treatment for their relative. This is not the case. Prior to the MCA coming into force, no one other than the patient could give or refuse consent to the treatment proposed for that patient so long as they were an adult. The High Court had common law powers to make declarations that the provision of treatment in the absence of consent would be lawful, but the introductory wording of those orders typically made clear that the person being treated did not have capacity and could not consent.1 Under the MCA, proxy consent in decision-making for others lies with a limited group of people: those to whom the patient has granted a lasting power of attorney (‘LPA’) over health and welfare decisions,2 and those appointed by the court as deputies to decide on behalf of the incapacitous patient.3 Relatives of an incapacitous patient, and others close to them,4 do nevertheless have a right to be consulted and to provide their views, which should be taken into account before treatment decisions are taken.5 1 Typically the declaratory orders made by the courts commenced with the words ‘IT IS DECLARED that (a) X lacks capacity; and (b) Notwithstanding X’s inability to consent to treatment, it shall be lawful for the clinicians at Y Hospital to [and the relevant treatment was then set out]’. 2 MCA, s 9(1)(a). 3 MCA, s 16(2)(b). 4 In the health context, this latter point often gets forgotten, with greater weight typically being attached to the views of relatives who are not emotionally close to P than those of longstanding friends who are in fact far closer to the patient. 5 But note para 3.25 below on the ability of a capacitous adult to restrict the sharing of information.

General rule 3: There is a power under the MCA to treat in an incapacitous person’s best interests 3.10 Prior to the MCA, the common law doctrine of necessity could be relied upon to permit doctors to provide urgent medical treatment to an incapacitous person where it was in their best interests. 77

3.10  Deciding for Others – Adults Since the MCA, that common law defence is now on a statutory footing in s 5 of the Act which provides that: ‘Acts in connection with care or treatment ‘(1) If a person (“D”) does an act in connection with the care or treatment of another person (“P”), the act is one to which this section applies if (a) before doing the act, D takes reasonable steps to establish whether P lacks capacity in relation to the matter in question, and (b) when doing the act, D reasonably believes (i) that P lacks capacity in relation to the matter, and (ii) that it will be in P’s best interests for the act to be done. ‘(2) D does not incur any liability in relation to the act that he would not have incurred if P (a) (b)

had had capacity to consent in relation to the matter, and had consented to D’s doing the act.’1

1 Emphasis added. Note that s 5 of the MCA is subject to the exceptions in s 5(3), (4) and (6). See Chapter 5: Restraint and Deprivation of Liberty for consideration of the scope of the defence where the patient is restrained in their best interests.

Doctrine of necessity 3.11 In the post-MCA world, the common law doctrine of necessity is highly unlikely to play a role in medical treatment cases. There is conclusive authority that the doctrine does not apply in the context of compulsory hospital admissions for mental health disorders, where the MHA is said to provide ‘a complete statutory code’: R (on the application of Sessay) v South London & Maudsley NHS Foundation Trust.1 As regards cases where the MCA should apply, Sir Robert Nelson concluded in ZH v The Commissioner of Police for the Metropolis that: ‘where the provisions of the Mental Capacity Act apply, the common law defence of necessity has no application. The Mental Capacity Act requires not only the best interests test but also specific regard to whether there might be a less restrictive way of dealing with the matter before the act is done, and, an obligation, where practicable and appropriate to consult them, to take into account the views of the carers. It cannot have been the intention of Parliament that the defence of necessity could override the provisions of the Mental Capacity Act which is specifically designed to provide specific and express pre-conditions for those dealing with people who lack capacity.’2 The Court of Appeal in the same case did not address the issue. The doctrine has not been formally abolished, and it may still have a role to play in cases that fall outside the scope of the MCA. In Cambridge University Hospitals NHS Foundation Trust v GD, Theis J rejected the possibility of leaving the Trust to rely on either the statutory defences or the doctrine itself, but in terms which acknowledged that it still exists as a potential fall back in an exceptional case.3 1

[2011] EWHC 2617 (QB).

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Deciding for Others – Adults 3.13 2 3

[2012] EWHC 604 (QB) at para 44. [2021] EWHC 2105 (Fam) at para 119, per Theis J: ‘It would not be in GW’s best interests to leave the Trusts to rely on statutory defences under ss5 and 6 MCA 2005, or the common law of necessity, which would provide less clarity and more uncertainty than the proposed wound management treatment plan.’ See also Alex Ruck Keene and Catherine Dobson’s illuminating review at page 23 para 65 of the Mental Capacity Law Guidance Note, Deprivation of Liberty in the Hospital Setting: ‘It is suggested, however, that the common law defence of necessity will only avail a person who is able to show that they were confronted with the need to deprive the incapacitated adult of their liberty in a true emergency position where (a) it was not possible to seek the assistance of the Court of Protection either before or during the currency of that deprivation of liberty; (b) no other statutory power existed upon which reliance could be placed (for instance s.17 PACE 1984 or s.135 MHA 1983); and (c) where it was necessary so to do to preserve them from serious harm’: see bit.ly/39EC-DoL-HGuide.

C  DECISION MAKING FOR ADULTS UNDER THE MCA Principles 3.12 The advent of the MCA ‘enshrines in statute current best practice and common law principles concerning people who lack capacity and those who take decisions on their behalf’.1 The MCA is underpinned by the five key principles set out in s 1 which are as follows: ‘(i)

unless and until it is established that a person lacks capacity, he shall be presumed to have capacity; ‘(ii) a person should not be treated as being unable to make a decision until all practicable steps have been taken to help him make the decision and he still lacks the necessary capacity; ‘(iii) a person should not be taken to lack capacity simply because he takes an unwise decision; ‘(iv) any act done or step taken on a person’s behalf under the MCA must be taken in his best interests; and ‘(v) where action is taken on behalf of a person who lacks capacity, care should be taken to ensure that the course which is followed is the least restrictive of that person’s rights.’ 1 Department of Constitutional Affairs: Mental Capacity Act 2005 – summary (archived at bit. ly/DCA-MCA-Summary); see the ‘Quick Summary’ at page 20 (pdf page 24) of the MCA Code of Practice: see bit.ly/MCA-Code.

Determination of best interests – overview 3.13 Where P lacks capacity to make a decision, the court has to make a decision that is in P’s best interests. The issue of best interests is central to any decision taken on behalf of another person. Section 1(5) of the MCA requires that any decision taken on behalf of a person must be in his best interests, while s 4 provides a detailed framework for assessment of best interests in each case. Any assessment of best interests must be carried out in accordance with the provisions of s 4 and in particular: ●●

All reasonable steps must be taken to ensure that the person in respect of whom the decision is taken is encouraged and enabled to participate.1 If the decision is not urgent, this may involve providing treatment or 79

3.13  Deciding for Others – Adults

●● ●●

●●

therapies to encourage communication. Where there are issues arising out of a person’s inability to understand advice, circumstances may warrant the instruction of a speech and language therapist to assist in comprehension and communication.2 It is vital to obtain the current wishes and feelings of the patient so far as possible. These, together with the patient’s previously held beliefs and values will be central to a decision as to best interests.3 As well as obtaining these directly from the patient, friends and family members4 will usually be a source of those views and opinions. If there are no friends and family, it is important to appoint an Independent Mental Capacity Advocate (‘IMCA’) to present these.5 The person conducting the assessment must ensure that all ‘relevant’ circumstances are taken into account.6 The scope of ‘relevant’ issues will vary from case to case. It may well include religious beliefs or previously expressed views as to treatment which have not been recorded formally in an advance decision. The person conducting the assessment must inquire into the issues that would probably have been considered relevant by the person in respect of whom decisions are being taken. The particular importance previously applied by a person to family ties or living in a certain way will be relevant and should be noted. The sources of information should be considered carefully, and care must be taken to ensure that advice from family members is not tainted by self-interest. These issues must be approached with sensitivity.

1 2 3

MCA, s 4(4). See for example Imperial College Healthcare An NHS Trust v MB [2019] EWCOP 30. MCA, s 4(6). The weight to be attached to previous wishes has been considered in In re S and another (Protected Persons) [2010] 1 WLR 1082, (2009) LS Law Medical 97, as qualified by In the matter of P [2009] EWHC 163 (Ch). 4 MCA, s 4(7). 5 See para 3.22 below. 6 MCA, s 4(2).

Holistic/wider best interests 3.14 Chapter 5 of the Code of Practice provides detailed guidance as to the assessment of best interests but the Act has not altered the basic approach that the court will take when assessing best interests. The courts have long accepted that ‘best interests are not limited to best medical interests’.1 Best interests encompass ‘medical, emotional and all other welfare issues’.2 As Thorpe LJ stated in Re SL (Adult Patient) (Medical Treatment): ‘In deciding what is best for the disabled patient the judge must have regard to the patient’s welfare as the paramount consideration. That embraces issues far wider than the medical. Indeed it would be undesirable and probably impossible to set bounds to what is relevant to a welfare determination.’3 The classic statement of principle is now that set out by Baroness Hale in Aintree University Hospitals NHS Foundation Trust v James.4 In explaining what was required of a decision-maker when assessing best interests, Lady Hale held: ‘The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must 80

Deciding for Others – Adults 3.16 look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be.’5 The application of the test focuses on best interests but contains an element of substituted judgment.6 1 2 3 4 5 6

Re MB (An Adult: Medical Treatment) [1997] 8 Med LR 217 at 225 per Butler-Sloss LJ. Re A (Medical Treatment: Male Sterilisation) [2000] 1 FCR 193, 53 BMLR 66, [2000] 02 LS Gaz R 30, sub nom Re A (male sterilisation) [2000] 1 FLR 549, CA. Re SL (Adult Patient) (Medical Treatment) [2000] 2 FLR 389, (2000) Lloyds Law Reports (Medical) 339; See also Thorpe LJ in Re A Male Sterilisation [2000] FLR 549. [2013] UKSC 67. Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67 at para 39. Fixsler v Manchester University NHS Foundation Trust [2021] EWCA Civ 1018 at para 12.

‘Analysis of Competing Issues’ 3.15 The courts used to focus on the preparation of a ‘balance sheet’, as suggested by Thorpe LJ in Re A: Male Sterilisation: ‘… it seems to me that the first instance judge with the responsibility to make an evaluation of the best interests of a claimant lacking capacity should draw up the balance sheet. The first entry should be of any factor or factors of actual benefit … on the other sheet the judge should write any counterbalancing dis-benefits to the applicant … then the judge should enter on each sheet the potential gains and losses in each instance making some estimate of the extent or possibility that the gain or loss might accrue. At the end of that exercise the judge should be better placed to strike a balance between the sum of the certain and possible gains against the sum of the certain and possible losses. Obviously only if the account is in relatively significant credit will the judge conclude that the application is likely to advance the best interests of the claimant.’1 Carrying out an assessment in this way will tend to avoid undue weight being placed on relatively hypothetical outcomes – a problem that Thorpe LJ considered had affected the judgment of the court at first instance in Re A. 1

Re A (Medical Treatment: Male Sterilisation) [2000] 1 FCR 193, 53 BMLR 66, [2000] 02 LS Gaz R 30, sub nom Re A (Male Sterilisation) [2000] 1 FLR 549, CA at 560E.

3.16 However, more recent case law indicates that in some instances, a balance sheet can be actively unhelpful. In Re F (A Child) (International Relocation Case)1 in the context of a child welfare case, MacFarlane LJ said: ‘Whilst I entirely agree that some form of balance sheet may be of assistance to judges, its use should be no more than an aide memoire of the key factors and how they match up against each other. If a balance sheet is used it should be a route to judgment and not a substitution for the judgment itself. A key step in any welfare evaluation is the attribution of weight, or lack of it, to each of the relevant considerations; one danger that may arise from setting out all the relevant factors in tabular format, is that the attribution of 81

3.16  Deciding for Others – Adults weight may be lost, with all elements of the table having equal value as in a map without contours.’2 In UR v Derby City Council,3 Hayden J agreed and went further, saying that a balance sheet could be positively ‘misleading’ in some cases. Accordingly, Hayden J considered it better to approach the matter with an ‘Analysis of the Competing Issues’ which more accurately captures the detailed and careful balancing exercise undertaken by the Court in considering P’s best interests. In that case, which concerned a potential move for treatment abroad, an analysis was set out by reference to the provisions of s 4 of the MCA. In addition to the patient’s wishes and the views of relevant others, the relevant factors encompassed a wide range of issues including the strength of different family relationships and the different entitlements to state support in the alternative jurisdictions under consideration.4 1 2 3 4

[2015] EWCA Civ 882. Ibid, para 52. UR v Derby City Council and NHS Derby and Derbyshire Clinical Commissioning Group [2021] EWCOP 10 at para 49. Ibid, paras 50–51.

3.17 Consideration should be given to the best way of assisting the court.1 Whichever approach is adopted, it is important to be even handed when assessing the benefits and burdens of the proposed course. The court will not be assisted by an analysis that is obviously slanted in favour of the party who has prepared it. 1

Examples of checklists may be found in OT [2009] EWHC 633 Fam at paras 109–145 and the balance sheet taken from An NHS Trust v MB [2006] EWHC 507 (Fam). See also the summary of considerations for and against treatment provided by Baroness Hale in Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67 at para 11. See Chapter 6: Going to Court.

The focus on the patient 3.18 Although the MCA has always required the court to take account of P’s views, in recent years there has been a definite move towards a more detailed focus on all the facts of the case, according more weight to P’s values and beliefs and less weight to a paternalistic approach.1 Some examples of that approach are set out below. In Aintree,2 the applicant NHS Trust asked Peter Jackson J for declarations that it was in Mr James’s best interests to withhold specified medical treatment in the event that he suffered a further deterioration. The agreed evidence was that he was in a minimally conscious state and the Trust’s application was supported by the Official Solicitor. The Judge rejected the argument that the treatment was futile or burdensome and that there was no prospect of recovery. He refused to grant the declarations and said:3 ‘I consider that the argument in favour of a declaration significantly undervalues the non-medical aspects of DJ’s situation at this time. These arguments would undoubtedly carry the day in a case where quality of life was truly awful or non-existent. I cannot find that this is the situation that DJ is in, looking overall at the peaks and troughs and the likely future deterioration. Moreover, as Hedley J put it in NHS Trust v Baby X,[4] a life from which others may recoil can yet be precious. It may be of some note 82

Deciding for Others – Adults 3.19 that counsel were not able to identify at short notice a case in which the withholding of treatment has been approved in a case where the patient’s quality of life was comparable to DJ’s, and where the family was in such clear opposition. In this case, DJ’s family life is of the closest and most meaningful kind and carries great weight in my assessment. ‘… Particular care must be taken when making declarations in circumstances that are not fully predictable or are, as here, fluctuating. Making full allowance for the unpleasant, painful and distressing aspects of treatment, I cannot conclude that it would be right to validate, in advance, the withholding of any of these treatments in all circumstances.’ The judge was overruled in the Court of Appeal. In the Supreme Court Lady Hale endorsed Peter Jackson J’s methodology but went on to remark: ‘That is not to say that I would have reached the same conclusion as the judge in relation to each of these treatments. There was no question of withdrawing clinically supported nutrition and hydration or ventilation or other supported breathing or, by the time of the hearing, intravenous antibiotics. The treatments in question were all highly invasive. I might have drawn a distinction between them. Invasive support for circulatory problems had been used successfully in the past and the patient had rallied. Renal replacement therapy had not so far been needed and so it might be difficult to predict both its effectiveness and its impact upon the patient’s overall wellbeing. Cardiopulmonary resuscitation, on the other hand, although it had been used successfully in the past, is designed to restart a heart which has stopped beating or lungs which have stopped breathing, in effect to bring the patient back to life. I can understand why the judge thought it premature to say that it should not be attempted. But given the particular nature of this treatment, given its prospects of success, and particularly given the risk that, if revived, the patient would be even more seriously disabled than before, I would probably have declared that it would not be in the patient’s best interests to attempt it. But if the judge has correctly directed himself as to the law, as in my view this judge did, an appellate court can only interfere with his decision if satisfied that it was wrong: Re B (A Child) (Care Proceedings: Appeal).[5] In a case as sensitive and difficult as this, whichever way the judge’s decision goes, an appellate court should be very slow to conclude that he was wrong.’6 Both the first instance and appellate approach underscore the rigour of the assessment that the court is required to undertake. 1 Re SB [2013] EWHC 1417. 2 [2012] EWHC 3524 (COP) reversed Court of Appeal: [2013] EWCA Civ 65, [2013] 4 All ER 67, [2013] Med LR 110, principle of first instance judge affirmed by the Supreme Court but Court of Appeal’s grant of declarations affirmed given the deterioration in J’s condition: [2013] UKSC 67, [2014] AC 591. 3 Ibid, para 84. 4 [2012] EWHC 2188 (Fam). 5 [2013] UKSC 33, [2013] 1 WLR 1911. 6 N4 above, para 42.

3.19 A NHS Foundation Trust v X1 concerned a young woman with a long history of anorexia nervosa. It had dominated her life for the previous 14 years during which time she had been repeatedly and compulsorily detained so that she could be provided with nutrition and hydration. Once she returned to an acceptable weight she was discharged into the community where psychiatric 83

3.19  Deciding for Others – Adults and support services were provided in order to address the underlying disorder. Over the course of her treatment she had become alcohol dependent and by the time of trial she had irreversible liver disease. The Trust sought declarations that it was not in P’s best interests to be subject to further compulsory detention and force-feeding and that it would be lawful not to provide her with nutrition and hydration with which she was non-compliant. The inevitable consequence of the Trust’s application was that unless P changed her mind and started to eat appropriately, then she would die. Cobb J reviewed in detail the evidence from medical experts, from the treating team and from Ms Y, a close friend of P’s. He was provided with a letter written by P to the court on the eve of his decision in which she set out her wishes. The Judge acknowledged that the highest priority should be attached to the preservation and sanctity of life.2 Nevertheless, on the facts of the case and according appropriate weight to P’s wishes, he agreed that compulsory feeding was not in P’s best interests and granted the Trust’s application. This focus on P and her wishes granted her autonomy over her life (and death) even though compulsory detention and force-feeding could have prolonged her life. 1 2

[2014] EWCOP 35. Ibid at para 36. See Chapter 13: Feeding, para 13.25.

3.20 That patient focus was demonstrated very clearly by Peter Jackson J in Wye Valley NHS Trust v B.1 P was a 73-year-old man with a severely infected leg. The medical evidence was that he would die unless the leg was amputated. P suffered from bipolar disorder and lacked capacity to decide whether the leg should be amputated; nevertheless he was clear that he did not wish to lose the leg. The Trust sought a declaration that it was in P’s best interests to undergo the surgery, but following a comprehensive review of the evidence and a detailed investigation of P’s character, his hopes and his beliefs, Peter Jackson J dismissed the application. His conclusion was a model of clarity and is repeated below as an example of the holistic way in which the court approaches the best interest exercise:2 ‘Having considered all of the evidence and the parties’ submissions, I have reached the clear conclusion that an enforced amputation would not be in Mr B’s best interests. ‘… Mr B has had a hard life. Through no fault of his own, he has suffered in his mental health for half a century. He is a sociable man who has experienced repeated losses so that he has become isolated. He has no next of kin. No one has ever visited him in hospital and no one ever will. Yet he is a proud man who sees no reason to prefer the views of others to his own. His religious beliefs are deeply meaningful to him and do not deserve to be described as delusions: they are his faith and they are an intrinsic part of who he is. I would not define Mr B by reference to his mental illness or his religious beliefs. Rather, his core quality is his “fierce independence”, and it is this that is now, as he sees it, under attack. ‘… Mr B is on any view in the later stages of his life. His fortitude in the face of death, however he has come by it, would be the envy of many people in better mental health. He has gained the respect of those who are currently nursing him.

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Deciding for Others – Adults 3.21 ‘… I am quite sure that it would not be in Mr B’s best interests to take away his little remaining independence and dignity in order to replace it with a future for which he understandably has no appetite and which could only be achieved after a traumatic and uncertain struggle that he and no one else would have to endure. There is a difference between fighting on someone’s behalf and just fighting them. Enforcing treatment in this case would surely be the latter.’3 1 [2015] EWCOP 60. 2 Ibid, paras 42 et seq. 3 See also the discussion of Re N [2015] EWCOP 76 case in Chapter 15: Withdrawal and withholding of Treatment, para 15.35.

P’s wishes and feelings, beliefs and values 3.21 Section 4(6) requires consideration of the person’s current and previously expressed wishes and feelings, beliefs and values. The courts have emphasised this point and have held that: ‘It must be emphasised that loss of capacity does not override respect for personal autonomy. Protecting the autonomy of the incapacitous is every bit as important as protecting the autonomy of the capacitous.’1 P’s wishes and feelings are of fundamental importance when considering what is in their best interests. In the context of medical decisions, clinicians should ensure that they ask P directly what their wishes and feelings are in relation to the specific issue being considered, and document these in the medical records. They should also consider any record of previously expressed views. Recent case law places a greater emphasis on promoting the autonomy of P, and shows that judicial interpretation of the MCA is moving in a more rightsbased direction that aims to empower P and promote their autonomy. However, P’s wishes and feelings will not be determinative of matters. Judges continue to strive to find the correct balance between protecting P and promoting P’s autonomy. In the recent case of Barnsley Hospital NHS Foundation Trust v MSP,2 the court held that withdrawal of all treatment beyond palliative care was in the best interests of a 34-year-old patient who was sedated, ventilated and had an irreversible stoma. In this case, P had made an advance decision, which, although procedurally defective and therefore not binding, made his wishes clear. Accordingly, significant weight was to be given to this. Hayden J considered: ‘When applying the best interests tests at, s.4(6) MCA, the focus must always be on identifying the views and feelings of P, the incapacitated individual. The objective is to reassert P’s autonomy and thus restore his right to take his own decisions in the way that he would have done had he not lost capacity. ‘The weight to be attributed to P’s wishes and feelings will of course differ depending on a variety of matters such as, for example, how clearly the wishes and feelings are expressed, how frequently they are (or were previously) expressed, how consistent P’s views are (or have been), the complexity of the decision and how close to the borderline of capacity the 85

3.21  Deciding for Others – Adults person is (or was when they expressed their relevant views). In this context it is important not to conflate the concept of wishes with feelings. The two are distinct. Sometimes that which a person does not say can, in context, be every bit as articulate as wishes stated explicitly.’3 The case of ITW v Z4 sets out how the court will approach the issue of P’s wishes and feelings: ‘i) First, P’s wishes and feelings will always be a significant factor to which the court must pay close regard: see Re MM; Local Authority X v MM[5]… ‘ii) Secondly, the weight to be attached to P’s wishes and feelings will always be case-specific and fact-specific. In some cases, in some situations, they may carry much, even, on occasions, preponderant, weight. In other cases, in other situations, and even where the circumstances may have some superficial similarity, they may carry very little weight. One cannot, as it were, attribute any particular a priori weight or importance to P’s wishes and feelings; it all depends, it must depend, upon the individual circumstances of the particular case. And even if one is dealing with a particular individual, the weight to be attached to their wishes and feelings must depend upon the particular context; in relation to one topic P’s wishes and feelings may carry great weight whilst at the same time carrying much less weight in relation to another topic. Just as the test of incapacity under the 2005 Act is, as under the common law, “issue specific”, so in a similar way the weight to be attached to P’s wishes and feelings will likewise be issue specific. ‘iii) Thirdly, in considering the weight and importance to be attached to P’s wishes and feelings the court must of course, and as required by section 4(2) of the 2005 Act, have regard to all the relevant circumstances. In this context the relevant circumstances will include, though I emphasise that they are by no means limited to, such matters as: a) the degree of P’s incapacity, for the nearer to the borderline the more weight must in principle be attached to P’s wishes and feelings: Re MM at para [124]; b) the strength and consistency of the views being expressed by P; c) the possible impact on P of knowledge that her wishes and feelings are not being given effect to: see again Re MM at para [124]; d) the extent to which P’s wishes and feelings are, or are not, rational, sensible, responsible and pragmatically capable of sensible implementation in the particular circumstances; and e) crucially, the extent to which P’s wishes and feelings, if given effect to, can properly be accommodated within the court’s overall assessment of what is in her best interests.’ The importance of the patient’s own views is illustrated by the case of PS v LP, where they were preferred to those of all the patient’s family.6 Notwithstanding the above, P’s wishes and feelings, even if very strongly held and consistently expressed, will not necessarily be determinative. In A NHS Trust v X, Sir James Munby determined that the wishes and feelings of 86

Deciding for Others – Adults 3.23 a Gillick-competent 16-year-old Jehovah’s witness, who was refusing blood transfusions, were not determinative: ‘Miss Watson [for the NHS Trust] submits that, whilst X’s rights under Article 8, and for that matter Article 9, are undoubtedly engaged, these are not absolute rights and, in a case such as this, have properly to be weighed in the balance as part of the best interests analysis in proceedings under the inherent jurisdiction. This approach, she says, has an objective and reasonable justification and pursues a legitimate aim, namely the care and treatment of a seriously unwell child. Ms Butler-Cole and Mr Ruck Keene [for CAFCASS] put the point succinctly: preserving the lives of children until adulthood is a legitimate aim. I agree.’7 1 2 3 4 5 6 7

Avon and Wiltshire Mental Health Partnership v WA [2020] EWCOP 37 at para 96. [2020] EWCOP 26. Ibid, paras 24–25. [2009] EWHC 2525 (Fam) at para 35, per Munby J. [2007] EWHC 2003 (Fam) at paras 121–124. [2013] EWCOP 1106. [2021] EWHC 65 (Fam) at para 134.

Independent Mental Capacity Advocates 3.22 In some cases a person may have an appointed IMCA. Where serious medical treatment is contemplated and there is no-one who falls within the categories above other than paid or professional carers, it is a statutory requirement that an IMCA is instructed by the NHS body proposing to provide such treatment1 to represent the patient. The person seeking to take a decision should instruct the IMCA to prepare a report.2 Importantly, though, while part of the IMCA’s role is to represent and put forward the views of the incapacitous patient, he has no power to consent to or refuse treatment on their behalf. 1 2

MCA, s 37(3). Code of Practice, para 5.50.

Consultation with other people 3.23 Prior to the MCA coming into force, a court would have expected to see evidence that steps had been taken to establish any relevant background information that might assist in deciding what the person’s view as to treatment would probably have been. The usual starting point would have been to consult family members. Section 4(7) of the MCA now specifically directs that where a person takes a decision for another: ‘He must take into account, if it is practicable and appropriate to consult them, the views of: (a) Anyone named by the person as someone to be consulted on the matter in question or on matters of that kind, (b) Anyone engaged in caring for the person or interested in his welfare, (c) Any donee of a lasting power of attorney granted by the person, and (d) Any deputy appointed for the person by the Court, 87

3.23  Deciding for Others – Adults as to what would be in the person’s best interests and, in particular, as to the matters mentioned in sub-section 6.’1 Section 4(7) imposes a duty to consult; a failure to comply with that duty will mean that the decision-maker may then be unable to rely upon s 5 of the MCA as a defence to any claim. It is important to consider who should be consulted, and to include close friends as well as family members. It is also important to note that the primary purpose of consultation with those who are looking after the patient or interested in their welfare is to obtain ‘in particular their view of what [P’s] attitude would be’, as a vital component in making the decision that is ‘right for [P] as an individual human being.’2 It is often the case that a person in respect of whom a decision is being taken will have had previous experience of incapacity or disability in a friend or family member and may have been heard to express views about the prospects of life in such circumstances. Such expressions will be more or less useful depending on the circumstances in which they were made, and on whether they appear representative of their values when looked at in the context of their personality and the way they have lived their life. There is an inherent tension between an appropriate scepticism about placing much weight on the views the patient expressed when fully able (because of the recognition that he may have been unable or unwilling to imagine the reality of the life they would have if seriously disabled), and the need to respect a person’s autonomy, which may find its only relevant expression in just those views.3 Where a person has spent many years looking after a partner suffering from a progressive debilitating illness and has witnessed first-hand and for an extended period of time the physical and mental deterioration involved then a court will rightly apply more weight to an expression that the carer would not wish under any circumstances to be in a similar position. However, there will be significant caution over expressions of desire as to future treatment based on insubstantial grounds and information.4 1 2

See also the Code of Practice at paras 5.49–5.54. Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67 at paras 39 and 45. 3 See Chapter 15: Withdrawal and withholding of Treatment, para 15.58. 4 The Court of Appeal in W Healthcare NHS Trust v (1) KH, (2) Hand (3) PH [2004] EWCA Civ 1324 acceded to an application by the Trust that it was lawful to insert a PEG feeding tube despite strong evidence from the family that the patient had expressed views which would not have supported such action.

DNAR Notices 3.24 Best interests consultation with family members also extends to DNAR (‘do not attempt resuscitation’) notices. In Winspear v City Hospitals Sunderland NHS Foundation Trust,1 the deceased’s mother was successful in her claim that there had been a violation of the procedural duty under Art 8(2) of the ECHR in circumstances where a DNAR notice was affixed to her son’s records without discussion or consultation with her. 1 [2015] EWHC 3250, adopting the principles stated in R (David Tracey) v Cambridge University Hospitals NHS Foundation Trust [2014] EWCA Civ 33, requiring consultation

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Deciding for Others – Adults 3.26 with the patient. See the guidance from the BMA, Decisions relating to CPR (cardiopulmonary resuscitation) (2016 – website updated August 2021): see bit.ly/BMA-CPR-guide.

Sharing information 3.25 When considering who should be consulted, and how to do so, the best interests decision maker must consider whether the patient has capacity to make decisions about who should be consulted, and what information they are willing to be shared with those consulted, which may vary from person to person. It is possible for an individual to retain capacity to make decisions about sharing information even if they lack capacity to make a decision about medical treatment; the presumption of capacity applies.1 Where the patient does retain that capacity, their decision will usually be determinative; where this is not the case, their views should still be considered as part of the decision about what information should be shared with each consultee. 1

MCA, s 1(2). See Chapter 2: Consent & Capacity – Adults, for the relevant principles.

Interests of others 3.26 In rare cases the interests of others may be a factor in the decision. Thus, bone marrow or organ donation may be appropriate if it is likely to ensure a close bond with a caring relative or indeed the survival of someone to whom the patient feels close.1 In such cases, careful thought needs to be given to the impact that donation will have on the donor and their relationship with the donee. This issue was recently before the Court of Protection in An NHS Foundation Trust v MC2 where the court was reminded that the best interests assessment is not to be narrowly construed as a test of ‘self-interests.’ P’s actual wishes may be altruistic and not in any way self-interested, and are highly relevant in such cases.3 In MC, the court granted the application and concluded that it was in P’s best interests to undergo the harvesting of blood stem cells in order to donate them to her mother, who was suffering with leukaemia. In this country, altruistic tissue donation by a live donor is regulated by the Human Tissue Authority (HTA). The HTA holds the statutory responsibility for giving authorisation for the procedure where the donor is a child or an adult who lacks capacity.4 The unusual case of SSHD v Sergei Skirpal5 also demonstrates the court’s broad approach to the best interests analysis. In this case, blood samples, for the purposes of testing and analysis, were sought from Mr Sergei Skripal and Ms Yulia Skripal following their exposure to a nerve agent in Salisbury. In permitting the taking of samples for the purposes of testing, Williams J considered that, if capacitous, the Skripals would likely have wanted ‘to support the UK government in taking steps on the international plane to hold those responsible to account’.6 He went on to say that the Skripals would probably have wished to see that justice was done, and to secure the best information following the commission of a serious crime. The court therefore held that the taking and testing of blood samples for the purposes of further investigation 89

3.26  Deciding for Others – Adults and verification would be in the Skripals’ best interests, notwithstanding the fact that these tests would be of no direct medical benefit to them. 1 2 3 4 5 6

Re Y (Mental Patient: Bone Marrow Donation) [1997] Fam 110. [2020] EWCOP 33. Re G (TJ) [2010) EWHC 3005 (COP) at para 54. Human Tissue Act 2004 and the Human Tissue Act (Persons who lack Capacity to Consent and Transplants) Regulations 2006. See Chapter 19: Human Organ and Tissue Donation. See In the matter of SW [2017] CWCOP 7. [2018] EWCOP 6. Ibid, para 14.

Financial interests 3.27 The financial interests of the patient are not usually a relevant factor to take into account, but it is possible to envisage cases where this might be so: if there was a choice between two equally valid forms of treatment, one of which would make fewer demands on the patient’s estate in terms of the cost of care to be provided, it would be acceptable to take this into account. However, it would be unwise in most cases for the doctor to become involved in such matters. This is not to suggest that they should be unaware of the dangers of others having ulterior motives for the views they express about the patient’s interests.1 What will always be unacceptable is seeking to adjust the timing of treatment or its withdrawal for the convenience, financial or otherwise, of others. 1 For example, Re S (Hospital Patient: Foreign Curator) [1996] Fam 23. See also UR v Derby City Council and NHS Derby and Derbyshire Clinical Commissioning Group [2021] EWCOP 10 discussed at para 3.16 above.

Experimental and controversial treatment 3.28 A doctor is obliged to assess a patient’s best medical interests in accordance with a competent and responsible standard of medical practice, against which they will be judged per Bolam.1 However, the court has shown that it will consider approving relatively controversial treatment where the balance of competing factors supports such a course. All such cases will turn on their specific facts, as the following examples show. In B NHS Trust v J,2 J had suffered a brain haemorrhage and entered a persistent vegetative state some three years prior to the case coming before the court. The Trust made an application, supported by the family, that it was lawful for life-saving treatment to be withdrawn. The Official Solicitor opposed the application and suggested that J be given a short course of Zolpidem – a drug which had, in three isolated cases, produced some improvement in patients in a similar state. Despite the views of the Trust and family, the President declared that it would be lawful for a three-day course of the drug to be administered, within which time any beneficial effects could be expected to have been demonstrated. In DS v JS & An NHS Trust,3 two sibling patients suffered from variant Creutzfeldt-Jakob disease which caused progressive neurological deterioration and inevitable death. There was no known cure and no medication recognised

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Deciding for Others – Adults 3.29 to defer the onset of symptoms or death. On application by the parents, the court granted a declaration that it was lawful for pioneering treatment to be attempted which comprised the intracerebral infusion of pentosan polysulphate, although this had never previously been attempted on human beings. A similar approach was taken by the court in University College London Hospitals NHS Foundation Trust v KG,4 where the court granted approval for P, who suffered from sporadic Creutzfeldt-Jakob Disease, to be given a novel treatment known as PRN100, even though this treatment had never been tested on or administered to anyone. In B v D and The Ministry of Defence,5 the court considered whether experimental treatment was in P’s best interests. P, aged 27, had suffered a traumatic brain injury and was seeking the court’s permission to travel to Serbia to receive experimental stem cell treatment, which was unsupported by any significant body of research or clinical trials. P had secured his own funds to pay for the treatment, and was adamant he wanted to receive it. The court gave consent to P travelling to Serbia to receive the proposed treatment, notwithstanding the absence of evidence on the treatment’s effectiveness. In his judgment, Baker J commented that ‘all life is an experiment’ and it is clear that P’s strongly held and consistently expressed wishes and feelings, and the likely impact on him of refusal, weighed heavily in the balance. On the other hand, in a case concerning a child, in Great Ormond Street Hospital for Children NHS Foundation Trust v Yates,6 the court held that travel to the US to attempt experimental and untested therapy, in the absence of any evidence of benefit, would not be the in the child’s best interests. 1 2 3 4 5 6

Bolam v Friern Hospital Management Committee [1957] 1 WLR 582. However, note the impact of the Supreme Court’s decision in Montgomery v Lanarkshire Health Board [2015] UKSC 11, see Chapter 1: Consent – General, para 1.20. [2006] EWHC 3152 (Fam). [2002] EWHC 2734 (Fam). [2018] EWCOP 29. [2017] EWCOP 15. [2017] EWHC 972 (Fam).

End of life – intolerability and dignity 3.29 At one stage there was a focus on defining the ‘best interests’ test by reference to the concept of ‘intolerability’. In Burke,1 Munby J considered the authorities in some detail and attempted to provide guidance for those assessing ‘best interests’ decisions. In conducting that exercise, he said: ‘There is a very strong presumption in favour of taking all steps which will prolong life and save in exceptional circumstances, or where the patient is dying, the best interests of the patient will normally require such steps to be taken. In case of doubt that doubt falls to be resolved in favour of the preservation of life. But the obligation is not absolute. Important as the sanctity of life is, it may have to take second place to human dignity. In the context of life-prolonging treatment the touchstone of best interests is intolerability. Thus, if life-prolonging treatment is providing some benefit it should be provided unless the patient’s life, if thus prolonged, would from the patient’s point of view be intolerable.’2

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3.29  Deciding for Others – Adults However, when Burke reached the Court of Appeal, the focus on the ‘intolerability’ of P’s life found little favour. The Master of the Rolls reviewed the guidance provided and said: ‘We do not think that any objection could have been taken to this summary had it not been for the final two sentences … The suggestion that the touchstone of “best interests” is the “intolerability” of continued life has, understandably, given rise to concern. The test of whether it is in the best interests of the patient to provide or continue [artificial nutrition and hydration] must depend on the particular circumstances … ‘As to the approach to best interests where a patient is close to death, it seems to us that the judge himself recognised that “intolerability” was not the test of best interests. At paragraph 104 he said: “where the patient is dying, the goal may properly be to ease suffering and, where appropriate, to ‘ease the passing’ rather than to achieve a short prolongation of life.” ‘We agree. We do not think it possible to attempt to define what is in the best interests of a patient by a single test, applicable in all the circumstances.’3 In Aintree v James, Lady Hale revisited the issue of intolerability but made it clear that this is not the appropriate test when considering best interests at the end of life.4 More recently, there has been a focus, especially in some end of life cases, on the concept of human dignity, it typically being asserted that imposing treatment on a patient who would not wish to receive it is an affront to their dignity. The courts have been clear in a number of cases that dignity is essentially personal to the individual in question, requiring a precise focus on the individual and investigation as to what they themselves would consider to be dignified (and undignified); only once identified can that dignity be afforded proper respect. In Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust v TG,5 it was suggested that it was undignified for TG to be cared for on an intensive care unit over an extensive period. Cohen J considered detailed evidence from TG’s family members as to her own beliefs and values, and concluded that TG herself would not perceive the intensive care as a loss of dignity, saying: ‘I am satisfied that the issue of indignity is not one that features large in this case. I arrive at that conclusion for a number of reasons, first of all it is quite clear from the statements made by the family and friends that personal dignity is not something that featured large in TG’s life or thoughts.’6 Similarly, in North West London Clinical Commissioning Group v GU,7 Hayden J concluded: ‘Thus, whilst there is and can be no defining characteristic of human dignity, it is clear that respect for personal autonomy is afforded pre-eminence. Each case will be both situational and person specific. In this respect there is a striking resonance both with the framework of the Mental Capacity Act 2005 and the jurisprudence which underpins it. The forensic approach is ‘subjective’, in the sense that it requires all involved, family members, treating clinicians, the Courts to conduct an intense focus on the individual 92

Deciding for Others – Adults 3.30 at the centre of the process. Frequently, it will involve drilling down into the person’s life, considering what he or she may have said or written and a more general evaluation of the code and values by which they have lived their life.’8 1 2 3 4 5 6 7 8

Burke v GMC [2006] QB 273. Ibid, para 116. R (Burke) v General Medical Council [2005] EWCA Civ 1003 at para 62. Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67 at paras 37–39. [2019] EWCOP 21. Ibid, para 22. [2021] EWCOP 59. Ibid, para 64. See also Chapter 4: Deciding for Others – Children, para 4.39.

The sanctity of life – a starting point 3.30 Judges have repeatedly emphasised that the assessment of best interests is a broad ranging all-encompassing assessment of a variety of factors including physical and psychological. There is one factor to which the court will accord a priority in any assessment: maintaining or prolonging life. For Lady Hale in Aintree v James: ‘The authorities are all agreed that the starting point is a strong presumption that it is in a person’s best interests to stay alive. As Sir Thomas Bingham MR said in the Court of Appeal in Bland,[1] “A profound respect for the sanctity of human life is embedded in our law and our moral philosophy”. Nevertheless, they are also all agreed that this is not an absolute.’2 Although the preservation of life is an important point from which to start the best interests assessment, it is not absolute. Even where the presumption in favour of life is supported very strongly by evidence about P’s firmly held religious beliefs, the court may find that on the specific facts of a given case, continuing treatment of escalating it (for example, by resuscitation) is not in P’s best interests. The sanctity of life is therefore a starting point that may be outweighed by other factors. In Briggs v Briggs,3 the court reiterated that the strong presumption in continuing life-sustaining treatment for a life that had value was not absolute and had to be weighed against the principle of self-determination. Similarly in M v N,4 it was held that it would be disrespectful to the 68-year-old P to preserve her life further in a manner that she would regard as ‘grotesque’; respect for her dignity and human freedom outweighed considerations of the further prolongation of life. More recently in University Hospitals Bristol NHS Foundation Trust v ED,5 the court held that it would be lawful for the hospital not to provide CPR or other resuscitative measures to a 35-year-old quadriplegic woman with cerebral palsy and severe learning difficulties. Overall, Moor J considered that P having to go through CPR and the additional invasive treatments in the ICU would not be in her best interests because it would be futile in the long term and would be likely to cause her pain and suffering, from which she would derive no benefit. 1 2 3

Airedale NHS Trust v Bland [1993] AC 789, [1993] 2 WLR 316, [1993] 1 All ER 821. Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67 at para 35. [2016] EWCOP 53.

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3.30  Deciding for Others – Adults 4 [2015] EWCOP 76. 5 [2020] EWCOP 18. See Chapter 15: Withdrawal and withholding of Treatment, Chapter 16: The right to die? and Chapter 18: End of Life.

Advance decisions 3.31 Prior to the MCA, any expression of wishes which preceded a loss of capacity provided a source of considerable difficulty both for patients and for those entrusted with treating them. In the absence of a clear framework, there was uncertainty as to the precise form of words that would be required to ensure that a court would not interfere with a patient’s desire to be treated (or not treated) in a certain way in the future. The position has now been significantly clarified by ss 24–26 of the MCA and the Code of Practice at Chapter 9.1 1 See Chapter 2: Consent & Capacity – Adults at paras 2.32–2.42.

Scope of power to treat 3.32 The general power to act under s 5 of the MCA, as described above, provides sufficient justification for most forms of treatment and care required for an incapacitated adult patient. Thus a decision as to the location in which a mentally incompetent stroke victim should be cared for is to be decided by those responsible for his care by reference to his best interests1 in the same way as a decision to perform surgery (always bearing in mind that a patient may have capacity in relation to some decisions and that different considerations may apply to different decisions). The MCA is not restricted in application to medical decisions and applies equally to decisions concerning property and affairs and other everyday decisions about personal care.2 Practitioners should exercise care in drafting the terms of the declarations and orders sought. Lady Hale in Aintree v James stated: ‘Hence the focus is on whether it is in the patient’s best interests to give the treatment, rather than on whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course that they have acted reasonably and without negligence) the clinical team will not be in breach of any duty towards the patient if they withhold or withdraw it.’3 If the treatment is found to be in the patient’s best interests, the court will usually give consent under s 16 of the MCA, as a decision made on P’s behalf. Difficult questions arise when a patient is uncooperative. The MCA authorises the use of restraint under s 6 only where it is reasonably believed that it is necessary to restrain in order to prevent harm to the patient and such restraint is a proportionate response to: (a) the likelihood of the patient suffering harm; and (b) the seriousness of that harm. Where the proposed treatment requires more than transient restraint, consideration must be given to whether the patient will be deprived of their liberty.4 94

Deciding for Others – Adults 3.34 1

Re S (Hospital Patient: Court’s Jurisdiction) [1996] Fam 1, [1995] 3 WLR 78, [1995] 3 All ER 290. 2 These decisions fall outside the scope of this book. 3 Aintree v University Hospitals NHS Foundation Trust v James [2013] UKSC 67 at para 22. 4 See Chapter 5: Restraint and Deprivation of Liberty.

The power of the Court of Protection to consent to treatment 3.33 The Court of Protection has power to make declarations about the lawfulness of providing or withholding any treatment, and to give consent to treatment in respect of an incapacitous adult.1 The court can, however, only decide between available options; if there is no doctor willing to provide a particular treatment, it cannot be considered as an available option.2 The court should not be asked to make a hypothetical determination of best interests in such circumstances.3 1 2

3

MCA, ss 15(1)(c) and 16(2). N v ACCG [2017] UKSC 22. In Re W (Medical Treatment: Anorexia) [2016] EWCOP 13 an application was made with two alternatives for treating an anorexic patient, but when the case was heard, one option was confirmed not to be available as no one was prepared to implement it. The court explored other options before reverting to the first alternative. AVS v A NHS Foundation Trust [2011] EWCA Civ 7.

Covert administration of medication and deceit 3.34 The decision to administer medication covertly is an area where difficult questions can arise. To do so will constitute a serious interference with a person’s autonomy and will engage their rights under Art 8 of the ECHR. Nonetheless, the courts have confirmed their willingness to approve both tacit and active deception of a patient, if satisfied that this is in their best interests, and subject to satisfying stringent conditions. Treatment without consent, including the covert use of medication, is also a potential restriction contributing to the objective factors creating a Deprivation of Liberty (‘DOL’) within the meaning of Art 5 of the ECHR. Medication without consent and/or covert medication are aspects of continuous supervision and control that are relevant to the existence of a DOL. Section 1(6) of the MCA is clearly relevant and consideration must be given to whether the covert administration of medication is the least restrictive option. Any intervention must be proportionate and be consistent with P’s best interests. The key principles when considering the covert use of medication were set out in Re AG,1 in which District Judge Bellamy gave the following guidance: ‘(a) Where there is a covert medication policy in place or indeed anything similar there must be full consultation with healthcare professionals and family. ‘(b) The existence of such treatment must be clearly identified within the assessment and authorisation. ‘(c) If the standard authorisation is to be for a period of longer than six months there should be a clear provision for regular, possibly monthly, reviews of the care and support plan.

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3.34  Deciding for Others – Adults ‘(d) There should at regular intervals be review involving family and healthcare professionals, all the more so if the standard authorisation is to be for the maximum twelve month period. ‘(e) Each case must be determined on its facts but I cannot see that it would be sensible for there to be an absolute policy that, in circumstances similar to this, standard authorisation should be limited to six months. It may be perfectly practical and proportionate provided there is a provision for reviews (or conditions attached) for the standard authorisation to be for the maximum period. ‘(f)  Where appointed an RPR should be fully involved in those discussions and review so that if appropriate an application for part 8 review can be made. ‘(g) Any change of medication or treatment regime should also trigger a review where such medication is covertly administered. ‘(h) Such matters can be achieved by placing appropriate conditions to which the standard authorisation is subject and would of course accord with chapter 8 of the deprivation of liberty safeguard’s code of practice. ‘(i) I endorse and gratefully adopt the proposed written guidance from BMBC as detailed earlier in this judgment and, whilst recognising it may not be proportionate or indeed desirable in every case, the revised format of the most recent standard authorisation.’ The specific guidance drawn up by the local authority in that case was as follows: ‘(1) Where P lacks capacity, refuses to take their medication, and is unable to understand the risks to their health by not taking it, then medication should only be administered covertly in exceptional circumstances; ‘(2) Before the covert administration of medication begins, there must be a best interest decision which includes the relevant health professionals and the person’s family members (except in particular urgent circumstances); ‘(3) If it is agreed that the administration of covert medication is in P’s best interests, then this must be recorded and placed in P’s medical records/care home records and there must be an agreed management plan including details of the review process; and ‘(4) All of the above documentation must be easily accessible on any viewing of the person’s records within the care/nursing home; ‘(5) If there is no agreement on the use of covert administration, then there should be an immediate application to the Court of Protection.’2 1 2

[2016] EWCOP 37 at para 43. Ibid, para 36.

3.35 Frequent reviews of any treatment plan which endorses the covert use of medication are required. There should be a review if there is any change of medication or treatment regime, and if the patient’s circumstances change. Even where there is no change in circumstances or medication, reviews should take place not less than annually. In Re AB,1 Mostyn J endorsed the covert administration of HIV medication to P by the means of ‘active deception.’ His judgment set out that whilst the authorisation of a course of medication involving deception might seem like 96

Deciding for Others – Adults 3.36 ‘a strong step to take’, he had absolutely no doubt on the facts of that case that the proposed course of action was in P’s best interests. The order approved by the court provided for frequent reviews, with a default of annual reviews even if there was no other reason to trigger a review. The order also provided that, were P to become aware that she had been receiving HIV medication covertly, and begin actively to resist treatment, the matter would need to be reviewed by the court. Practitioners should be aware that where there is a standard authorisation in place, the use of covert medication and its consequences should be noted in any best interests assessment for the purposes of Schedule A1 authorisation. Where there is covert medication the standard authorisation should not generally be for maximum period unless conditions are attached providing for more regular review. The managing authority (usually the care home) must also be aware of its duty to notify the supervisory body of any change to the care plan/covert medication regime. These points should also be borne in mind by practitioners for inclusion in any plan and court order providing for the covert administration of medication to P. 1

[2016] EWCOP 66.

Deception and P’s Article 8 rights 3.36 Whilst it is beyond doubt that Art 8 is engaged in cases on the covert use of medication, the interference can be said to be proportionate so long as a best interests analysis has been conducted. In University Hospitals of Derby and Burton NHS Foundation Trust v J,1 Williams J discussed whether the deception of P could be compliant with P’s Art 8 rights. This case considered whether proposed surgery (including a hysterectomy) was in P’s best interests, in circumstances where the care plan included an element of deception of P. Williams J stated that the court had previously confirmed that covert administration can be compliant with P’s Art 8 rights provided the best interests exercise has been carried out. He went on to say that: ‘It seems to me that if it is in P’s best interests for deception or misrepresentation to take place then the court would be obliged to authorise that. The question of the level of deception would no doubt feed into the evaluation of whether the best interests of P were met by the plan which involved that deception; the greater the deception the more it might potentially weigh against P’s best interest and vice versa, but as a matter of principle it seems to me that deception cannot be a bar to authorisation of a procedure. To hold otherwise would be to supplant the best interests of P by some other principle, perhaps of public policy, that the court should not condone white lies.’2 For a contrary decision where, on the facts of the case, deception was held not to be in P’s best interests to administer a vaccine, see SS v London Borough of Richmond Upon Thames.3 1

University Hospitals of Derby and Burton NHS Foundation Trust v J (Medical Treatment: Best Interests) [2019] EWCOP 16.

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3.36  Deciding for Others – Adults 2 [2019] EWCOP 16 at para 34, and citing NHS Trust v K [2012] EWCOP 2922; Re AB [2016] EWCOP 66; Re P [2018] EWCOP 10 and NHS Trust (1) and (2) v FG [2014] EWCOP 30. 3 [2021] EWCOP 31; discussed at para 3.40 below.

Covert insertion of contraceptive devices? 3.37 The covert insertion of a contraceptive device poses a particularly severe interference to P’s Art 8 rights. These cases should almost invariably be brought to court. In Re P,1 Baker J considered that the covert provision of medication is always an interference with personal autonomy and thus a very significant step, but that the covert insertion of a contraceptive IUD is, arguably, an even more serious interference with an individual’s personal autonomy and Art 8 rights. He held that: ‘Given the serious infringement of rights involved in the covert insertion of a contraceptive device, it is in my judgment highly probable that, in most, if not all, cases, professionals faced with a decision whether to take that step will conclude that it is appropriate to apply to the court to facilitate a comprehensive analysis of best interests, with P having the benefit of legal representation and independent expert advice.’2 In such cases, particular thought will also need to be given to the steps which will have to be taken to replace or remove the device at a future point. 1 2

[2018] EWCOP 10. Ibid, para 56.

Does P need to be told he has been covertly medicated? 3.38 As a separate point, where P has been covertly medicated or otherwise deceived in their best interests, it is appropriate to consider whether they should be told of that at a future point. In M v ABM University Health Board,1 the Upper Tribunal considered the issue. UTJ Mitchell held that a direction of the Mental Health Review Tribunal for Wales’ (‘the Tribunal’) prohibiting disclosure to M that he had been covertly medicated involved an error of law, because the Tribunal had failed to consider the extent to which P (who lacked capacity) was nevertheless capable of participating in proceedings. That issue ought to have been addressed before the Tribunal decided whether it was proportionate to withhold the information from M. The Upper Tribunal was explicitly clear that the fact P lacked capacity to appoint a legal representative did not mean that P had no relevant wishes and feelings that fell to be taken into account. The Tribunal remained under a duty to, as far as practicable, ensure that M was able to participate fully in the proceedings. The Tribunal was required to turn its mind to the extent to which M was capable of participating in the proceedings. Only then could it properly answer the key question on whether it was proportionate to withhold the information from M on the covert of medication. The matter was to be remitted to the Tribunal in order for it to redetermine whether the covert medication information supplied to the Tribunal should be 98

Deciding for Others – Adults 3.39 withheld from M, following consideration of P’s ability to participate in that decision. 1 [2018] UKUT 120 (AAC). See also NHS Trust (1) and (2) v FG [2014] EWCOP 30, where Keehan J authorised the applicant Trusts not to inform P of the proceedings which had been brought, but for a limited time only. He described this step as ‘at the extremity of what is permissible under the European Convention. It is a very exceptional step which will only be justified and required if the interests of the patient and/or the child demand the same’ (para 55), and provided for further evidence of the continued impact of disclosure once P’s child had been born. Once satisfied the order for non-disclosure was no longer required, he directed that she be informed of the proceedings (paras 63–66). See Chapter 12: Pregnancy and Childbirth at para 12.19.

Covid-19 vaccination case law 3.39 In 2021, the Court of Protection gave judgment in a number of cases concerning the Covid-19 vaccine. In the majority of these cases, vaccination was held to be in P’s best interests. However, that is by no means the inevitable result. E (Vaccine)1 was the first reported Covid vaccination judgment. E was an 80-year-old lady with a diagnosis of dementia and schizophrenia, residing in a London care home. She was due to be vaccinated in line with the national vaccine roll-out programme, but her son objected. E lacked capacity to make a decision on whether to receive the vaccine. Hayden J considered a number of factors relevant to the best interests assessment, including: (a) (b) (c) (d)

E’s wishes and feelings: she had stated she wanted ‘whatever is best for me’; the beliefs and values that would likely influence her decision if she had capacity; in particular, she had consented to other vaccines, including for influenza, when she had capacity; the views of her son, who was sceptical about this vaccine; the particular risk of Covid-19 to E: this was high, given her placement in a care home with covid-positive patients.

In those circumstances, vaccination was in her best interests; Hayden J considered the risk matrix in the case was ‘not, to my mind, a delicately balanced one.’2 The physical health benefits to the particular individual must always be counterbalanced against any psychological burdens vaccination may cause them. Vaccination was discussed but not determined in Re EOA,3 which concerned a 19 year old who refused to engage with medical professionals and was highly likely to refuse the vaccination. The judge commented that: ‘in welfare terms the issue of forcing a vaccination upon him would raise very sensitive issues of the balance between his physical health and the psychological impact which might be profound and would almost certainly have a significant impact on his trust in those around him …’4 Vaccination was considered to be in P’s best interests in SD v Royal Borough of Kensington and Chelsea, although Hayden J confirmed there was no presumption in favour of vaccination: ‘In cases such as this, there is a strong draw towards vaccination as likely to be in the best interests of a protected party (P). However, this will not 99

3.39  Deciding for Others – Adults always be the case nor even presumptively so …. It is P’s voice that requires to be heard and which should never be conflated or confused with the voices of others, including family members …’5 1 2 3 4 5

[2021] EWCOP 7. Ibid, para 17. [2021] EWCOP 20. Ibid, para 54. [2021] EWCOP 14 at para 33. See also Re CR [2021] EWCOP 19 in which HHJ Butler considered vaccination to be in the best interests of a young man with autism.

Where vaccination not in P’s best interests 3.40 Vaccination was, however, held not to be in P’s best interests by Hayden J in SS v London Borough of Richmond Upon Thames.1 SS was an 86-year-old lady with a diagnosis of dementia who was becoming increasingly resistant to any medical interventions. There was no evidence of SS receiving any vaccinations in her medical records dating back to 1997; she had declined both seasonal influenza and pneumococcal vaccine when offered.2 Accordingly, Hayden J considered that there was ‘substantial material from which to conclude that SS if capacitous would most likely have declined the vaccination’.3 SS was also at relatively low risk of contracting Covid. In considering ways in which to potentially administer the vaccine to SS, Hayden J rejected the suggestion that she be told her now deceased father ‘approved’ of her getting the vaccine, because to do so would be to feed into her delusional belief system that her parents remained alive. Such an approach was felt to risk ‘compromising her dignity and suborning her autonomy.’4 In coming to his decision, Hayden J reiterated that a determination of: ‘best interests in this context is … not to be confined to the epidemiological; it requires evaluating welfare in a broader sense.’5 In a case where the plan would involve both sedation and restraint to administer the vaccine, against a documented historic refusal of vaccine, and a lower level of risk than seen in the earlier case law, it is perhaps unsurprising that the court concluded that vaccination was not in SS’s best interests. 1 2 3 4 5

[2021] EWCOP 31. Ibid, para 20. Ibid, para 25. Ibid, para 32. Ibid, para 36.

‘Booster’ shots 3.41 Finally, the issue of ‘booster’ doses was considered in Re A (Covid-19 Vaccination)1 in a judgment by HHJ Brown. In this case, the CCG was seeking a declaration that AD lacked capacity and an order that he be given two doses of the Covid vaccine, and a ‘booster’ third dose if the earlier doses had been successfully administered in accordance with the care plan. HHJ Brown declared it was lawful for AD, who was clinically extremely vulnerable to Covid, and unable to understand or follow social distancing guidance, to be given two doses of the vaccine. The plan for AD to be given 100

Deciding for Others – Adults 3.42 an anxiolytic covertly in a drink in advance of the vaccine, and the plan not to inform AD of the vaccine so as to avoid distress, was also approved. However, HHJ Brown considered that guidance and medical advice on the booster shot might have changed by the time it became relevant to AD, such that it would be ‘overreach’ for the court to sanction administration of the booster at this time. 1

[2021] EWCOP 47.

D  THE COURT’S POWERS UNDER ITS INHERENT JURISDICTION RELATING TO VULNERABLE ADULTS 3.42 Following the enactment of the MCA, there was some doubt as to whether the court retained its inherent jurisdiction powers, which had previously been the source of all declarations and orders relating to vulnerable patients needing medical treatment. That question was conclusively settled by the Court of Appeal decision in DL v A Local Authority,1 which confirmed the continued existence of the jurisdiction and set out some of its scope. The starting point for any consideration of the inherent jurisdiction is the seminal judgment of Munby J in SA v A Local Authority.2 SA was a young woman with profound disabilities who turned 18 shortly after the hearing, but before judgment was handed down. Prior to her 18th birthday the court had exercised its inherent parens patriae and wardship jurisdiction to give her protection. SA had capacity to marry, but the local authority was concerned that she might be taken to Pakistan to be married against her wishes. The case squarely raised the issue of whether the inherent jurisdiction could be exercised for her protection. In holding that it could, Munby J described the nature of the jurisdiction: ‘It is now clear, in my judgment, that the court exercises what is, in substance and reality, a jurisdiction in relation to incompetent adults which is for all practical purposes indistinguishable from its well-established parens patriae or wardship jurisdictions in relation to children. The court exercises a “protective jurisdiction” in relation to vulnerable adults just as it does in relation to wards of court. … It is a flexible remedy and adaptable to ensure the protection of a person who is under a disability.’3 The scope of the jurisdiction is described as extending to a class of persons beyond those disabled by mental capacity, and the relief which can be granted as extending beyond what is necessary on an interim basis while enquiries are made as to whether the adult is in fact vulnerable.4 Munby J concluded a comprehensive analysis of previous authorities and said: ‘76. In the light of these authorities it can be seen that the inherent jurisdiction is no longer correctly to be understood as confined to cases where a vulnerable adult is disabled by mental incapacity from making his own decision about the matter in hand and cases where an adult, although not mentally incapacitated, is unable to communicate his decision. The jurisdiction, in my judgment, extends to a wider class of vulnerable adults. ‘77. It would be unwise, and indeed inappropriate, for me even to attempt to define who might fall into this group in relation to whom the court can 101

3.42  Deciding for Others – Adults properly exercise its inherent jurisdiction. I disavow any such intention. It suffices for present purposes to say that, in my judgment, the authorities to which I have referred demonstrate that the inherent jurisdiction can be exercised in relation to a vulnerable adult who, even if not incapacitated by mental disorder or mental illness, is, or is reasonably believed to be, either (i) under constraint or (ii) subject to coercion or undue influence or (iii) for some other reason deprived of the capacity to make the relevant decision, or disabled from making a free choice, or incapacitated or disabled from giving or expressing a real and genuine consent. ‘78. I should elaborate this a little: i) Constraint: It does not matter for this purpose whether the constraint amounts to actual incarceration. … It is enough that there is some significant curtailment of the freedom to do those things which in this country free men and women are entitled to do. ii) Coercion or undue influence: What I have in mind here are the kind of vitiating circumstances … where a vulnerable adult’s capacity or will to decide has been sapped and overborne by the improper influence of another. … where the influence is that of a parent or other close and dominating relative, and where the arguments and persuasion are based upon personal affection or duty, religious beliefs, powerful social or cultural conventions, or asserted social, familial or domestic obligations, the influence may … be subtle, insidious, pervasive and powerful. In such cases, moreover, very little pressure may suffice to bring about the desired result. iii) Other disabling circumstances: What I have in mind here are the many other circumstances that may so reduce a vulnerable adult’s understanding and reasoning powers as to prevent him forming or expressing a real and genuine consent, for example, the effects of deception, misinformation, physical disability, illness, weakness (physical, mental or moral), tiredness, shock, fatigue, depression, pain or drugs. No doubt there are others. ‘79. … There is, however, in my judgment, a common thread to all this. The inherent jurisdiction can be invoked wherever a vulnerable adult is, or is reasonably believed to be, for some reason deprived of the capacity to make the relevant decision, or disabled from making a free choice, or incapacitated or disabled from giving or expressing a real and genuine consent. The cause may be, but is not for this purpose limited to, mental disorder or mental illness. A vulnerable adult who does not suffer from any kind of mental incapacity may nonetheless be entitled to the protection of the inherent jurisdiction if he is, or is reasonably believed to be, incapacitated from making the relevant decision by reason of such things as constraint, coercion, undue influence or other vitiating factors.’5 Munby J considered that the court’s powers extended to the grant of injunctive relief,6 orders enabling third parties to take protective steps for the benefit of the individual,7 and ‘whatever orders and to give whatever directions are needed to ascertain the true wishes of a vulnerable adult or to ascertain whether a vulnerable adult is able to exercise her free will or is confined, controlled, coerced or under restraint.’8 He granted orders to protect SA from the threat of an arranged marriage against her wishes, and to enable her to exercise her right to self-determination.9 102

Deciding for Others – Adults 3.44 1 2 3 4 5 6 7 8 9

[2012] EWCA Civ 253. [2005] EWHC 2942 (Fam). Ibid, paras 37 and 41. Ibid, paras 46–48. Ibid, paras 76–79. Ibid, para 86. Ibid, para 92. Ibid, para 94. Ibid, paras 130–131. The terms of the order are set out in the judgment at para 136.

3.43 Munby J’s analysis was approved by the Court of Appeal in DL v A Local Authority,1 in which McFarlane LJ made these observations about the scope and extent of the inherent jurisdiction as: ‘… targeted solely at those adults whose ability to make decisions for themselves has been compromised by matters other than those covered by the MCA 2005. ‘The jurisdiction, as described by Munby J and as applied by Theis J in this case, is in part aimed at enhancing or liberating the autonomy of a vulnerable adult whose autonomy has been compromised by a reason other than mental incapacity …’2 He considered there was a strong public policy reason for the continuing existence of the jurisdiction, noting the recognition of elder abuse,3 and also considered it would not be helpful to circumscribe the list of those who might fall under the court’s protection.4 He also considered the jurisdiction compatible with Art 8 of the ECHR, as: ‘Any interference with the right to respect for an individual’s private or family life is justified to protect his health and or to protect his right to enjoy his Article 8 rights as he may choose without the undue influence (or other adverse intervention) of a third party. Any orders made by the court in a particular case must be only those which are necessary and proportionate to the facts of that case, again in like manner to the approach under the MCA 2005. In this respect it is not irrelevant that the judges of the High Court, Family Division to whom the exercise of this aspect of the inherent jurisdiction is assigned, are all also judges of the Court of Protection and well used to the approach under the statutory scheme.’5 1 2 3 4 5

[2012] EWCA Civ 253. Ibid, paras 53–54. Ibid, para 63. Ibid, para 64. Ibid, para 66.

3.44 Since these important judgments were handed down, the scope and purpose of the inherent jurisdiction has been developed further and widely debated. As most of this has taken place in the context of welfare, rather than medical treatment decisions, further detailed discussion is outside the scope of this book. The jurisdiction is, however, important for medical treatment decisions in some cases, particularly where declarations and orders are sought contingent on a loss of capacity,1 or where a declaration is sought that it is not a patient’s best interests to exercise powers which would be available to clinicians under s 63 of the MHA.2 1 See Chapter 2: Consent & Capacity – Adults, Deprivation of Liberty, para 5.85. 2 See para 3.4 above.

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para

2.23; Chapter 5: Restraint and

3.45  Deciding for Others – Adults

E CONCLUSION 3.45 Finally, it is important to remember that if an application to court is required, it will almost always be in P’s best interests to bring the application as soon as possible. As the courts have repeatedly emphasised, respect for P’s Art 6 and 8 rights requires that applications are made promptly and in accordance with the timescale which is in P’s best interests: ‘Though the avoidance of delay is not prescribed by the Mental Capacity Act 2005, the precept should be read in to the proceedings as a facet of Article 6 ECHR …. Any avoidable delay is likely to be inimical to P’s best interests’.1 In Sherwood Forest Hospitals NHS Foundation Trust v H,2 Hayden J emphasised that delay is: ‘invariably inconsistent with P’s welfare and, if resolution cannot be achieved, having particular regard to P’s own timescales, then proceedings will need to be issued.’3 Hayden J set out that, whilst consideration should always be given to whether a matter can be resolved, consideration must also be given to whether an application to the Court of Protection is required if: (a) (b) (c) (d)

there is a difference of medical opinion; or the way forward is finely balanced; or there is a lack of agreement; or there is opposition.4

Notwithstanding repeated emphasis in the case law on avoiding delay, applications are still made out of hours or on short notice for declarations in respect of treatment which should have been anticipated weeks, or sometimes even months, in advance. There continue to be frequent occasions (often involving pregnancies in women suffering from mental illness) where issues are raised all too late in the day. In University Hospitals Dorset NHS Foundation Trust v Miss K,5 Lieven J set out in the clearest terms the risks of delay in terms of properly representing P’s interests. The Official Solicitor had only been instructed on the day of the hearing, making the task of adequately representing P ‘virtually impossible’. Lieven J considered that it was ‘wholly unacceptable that NHS Trusts routinely put the Official Solicitor in such an impossible position where she cannot do the job she is instructed to do, and where her role effectively becomes a tick box exercise.’6 If the Official Solicitor is to meaningfully act as P’s litigation friend, and to properly play a role in proceedings, then clearly the Official Solicitor must be notified as soon as possible. Whilst in critical pressing cases the court will always find a way to take such urgent decisions as need to be made on the basis of the information available to it, such a position is far from ideal. It is essential that those involved in advising on or taking medical treatment decisions should ensure that early and proper assessments of all the relevant issues are conducted. Timely notification of cases can then be made both to the Official Solicitor and the court. 1

London Borough of Southwark v NP [2019] EWCOP 48. See also Imperial College Healthcare An NHS Trust v MB [2019] EWCOP 29).

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Deciding for Others – Adults 3.45 2 3 4 5 6

[2020] EWCOP 5. [2020] EWCOP 5 at para 16. [2020] EWCOP 5 at para 17. [2021] EWCOP 40. [2021] EWCOP 40 at para 4. See further Chapter 6: Going to Court.

For updating material and hyperlinks related to this chapter, see: www.serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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Chapter 4

Deciding for Others – Children

A B

C

D

E

Framework 4.1 The child’s ability to give valid consent  4.2 General principle  4.2 Children of 16 years of age and over  4.3 The Family Law Reform Act 1969  4.3 Children aged 16–17 – capacity  4.4 Children under the age of 16 – Gillick competence  4.5 Bell v Tavistock 4.6 Who determines competence?  4.7 Gillick competence and best interests  4.8 The child’s ability to refuse  4.9 A refusal by a minor of any age can be overridden by the court  4.10 Compulsory treatment and children’s rights  4.11 European Convention on Human Rights  4.11 United Nations Convention on the Rights of the Child  4.12 Re X (A Child) (No 2) 4.13 The refusal of a capacitous minor of 16–17 or a Gillick competent child cannot be overridden by the consent of a parent  4.14 Children under the age of 16 not possessing Gillick competence  4.15 Parents and those with parental responsibility  4.16 Power to consent  4.16 Where parental consent is given but a court application may still be required  4.17 Disputes between parents  4.18 Disputes between parents and local authorities with parental responsibility 4.19 Best interests  4.20 The court – and consideration of alternative dispute resolution  4.20 The approach to best interests  4.21 The key principles – Fixsler 4.22 The views of the minor  4.23 The views of parents  4.24 Parental rights  4.25 Legal challenges to the best interests test: Charlie Gard and Alfie Evans 4.26 Pippa Knight 4.27 Alta Fixsler 4.28 107

4.1  Deciding for Others – Children

F

G H

I

Cases where parental views have prevailed  4.29 Tafida Raqeeb 4.30 Participation of parents  4.31 Further considerations  4.32 Treatment of very young children  4.32 Deliberate killing – the conjoined twins case  4.33 Withholding and withdrawing life-sustaining treatment  4.34 Withholding treatment  4.34 Withdrawing treatment  4.35 Providing treatment  4.36 Preservation of life: vitally important but not determinative  4.37 Pain 4.38 Dignity 4.39 Balance sheet  4.40 Procedure 4.41 Practical tips  4.42 Mental Health Act 1983  4.43 Admission to hospital  4.43 Young people aged 16–17 and Gillick competent children  4.43 Treatment 4.44 Mental Health Act 1983: Code of Practice  4.44 Conclusion 4.45

A FRAMEWORK 4.1 In English law a child is any person under the age of 18. As might be expected, the law recognises that children do not possess the same capacity to make decisions as adults. As will be seen, however, much depends on the age and understanding of the child. Consent to provide medical treatment to a child can be obtained from a number of sources, but treatment should not be undertaken without obtaining consent or authority from one of the following: ●● ●● ●●

the child in question, if they are over the age of 16 or otherwise of sufficient maturity and comprehension to take a decision of the relevant gravity (‘Gillick competent’); those with parental responsibility – usually one or both of the parents, unless parental responsibility has been allocated by the court in some different way or to a third party;1 the court exercising its inherent or statutory jurisdiction over children.

In the absence of any such authority it is unlawful to treat a child unless the circumstances are of such urgency that it is impossible to obtain such consent and it is in the child’s best interests to have the treatment.2 Whereas consent by any of those with the capacity to do so will usually be sufficient authority to proceed with the treatment, this is not invariably the case. Where there is a dispute, consideration will need to be given to whether an application to the court should be made.3 The position with regard to refusal of treatment recommended by a medical professional for a child is different to that in the case of adults. The effect of 108

Deciding for Others – Children 4.1 an objection to treatment depends on who makes it. The case law indicates the following hierarchy of authority: ●● ●● ●●

the refusal of the child patient who is under the age of 16 and who is not ‘Gillick competent’4 will not prevail against the consent of a person with parental responsibility or the court; the refusal of the parent will not prevail against the consent of a child who is either 16 and over, or Gillick competent;5 the refusal of the child (regardless of age, competence or capacity) or of the parents will not prevail against the authority of the court exercising its inherent or statutory jurisdiction.6

In recent years, the legitimacy of this position has been considered by the courts, particularly in relation to developments in the law introduced by the Human Rights Act 1998 (‘HRA’) and the Mental Capacity Act 2005 (‘MCA’).7 However, as English law stands, the position remains that it is permissible – with the relevant authority – to provide medical treatment to a child against their will and to use restraint that is reasonably necessary for that purpose.8 If the medical regime imposed would amount to a deprivation of liberty (and not merely a restriction of liberty), parental consent for 16- and 17-year-old children is not sufficient authorisation.9 The position in relation to the authorisation of a deprivation of liberty associated with the treatment of children aged 15 and under is more complicated and is addressed elsewhere in this text.10 1 However, note that certain categories of procedure should not be performed without the court’s permission: see for example Chapter 6: Going to Court, paras 6.11–12, 6.66–74; Chapter 10: Sterilisation & Contraception, para 10.22. Also note that if parents are in a private dispute in relation to the medical treatment of their child, the approval of the court may be required; the same may apply where a local authority has parental responsibility and there is a disagreement with the child’s natural parents: see below para 4.19. 2 Re R (Wardship: Consent to Treatment) [1992] Fam 11, CA. In circumstances of acute urgency where no consent can be obtained, for example, providing a blood transfusion or life-saving surgery to a child who has been involved in a serious accident, treatment may be justified by the doctrine of necessity: see Re F (Mental Patient: Sterilisation) [1990] 2 AC 1 at para 52 per Lord Bridge and Re A (Children) (Conjoined Twins: Surgical Separation) [2001] Fam 147, [2000] 4 All ER 961 per Brooke LJ. See para 4.33 below and Chapter 3: Deciding for Others – Adults, para 3.11. 3 See paras 4.17–4.19 below. 4 ‘Gillick competent’ in this book indicates a child who is of sufficient maturity and understanding to consent to the treatment in question. 5 See para 4.14 below. 6 Re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11 at 26E–26H and Re W (A Minor) (Medical reatment: Court’s Jurisdiction) [1993] Fam 64 at 81C–81D, [1992] 3 WLR 758, [1992] 4 All ER 627, CA, Re X (A Child) (No 2) [2021] EWHC 65 (Fam). See para 4.13 below. 7 Section 131(4) of the Mental Health Act 1983 provides specifically that parental consent cannot override the refusal of a child aged 16 or 17 years old with capacity to refuse informal admission to hospital: see below para 4.43–4.44. 8 In Re X (A Child) (No 2) [2021] EWHC 65 (Fam), Sir James Munby reaffirmed the ‘conventional wisdom’ of the common law position in a comprehensive judgment which reconsidered this principle in light of developments in jurisprudence following the introduction of the HRA and the MCA. Sir James Munby held (at paras 22–26) that the court’s ability to overrule the refusal of a child does not displace the court’s duty to afford ‘great attention’ to the express wishes and feelings of a child old enough to be able to express sensible views. See para 4.13 below. 9 See Re D (A Child) [2019] UKSC 42, [2020] 2 All ER 399. See Chapter 5: Restraint and Deprivation of Liberty, para 5.72. 10 See Chapter 5: Restraint and Deprivation of Liberty, paras 5.70–5.73. Re D (A Child: Deprivation of Liberty) [2015] EWHC 922 (Fam); Re A-F (Children) [2018] EWHC 138; Re AB (A Child) (Deprivation of Liberty: Consent) [2015] EWHC 3125.

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4.2  Deciding for Others – Children

B  THE CHILD’S ABILITY TO GIVE VALID CONSENT General principle 4.2 The consent of a child who has either attained the age of 16 and has the requisite mental capacity, or is otherwise of sufficient maturity, to treatment offered by a clinician in their best interests cannot be overruled by anyone with parental responsibility, although the court may do so in exercising its inherent jurisdiction. In Re W (A Minor) (Medical Treatment),1 Lord Donaldson MR said: ‘A minor of any age who is ‘Gillick competent’ in the context of particular treatment has the right to consent to that treatment, which again cannot be overridden by those with parental responsibility, but can be overridden by the court’.2 This principle has been recently affirmed by Sir James Munby in Re X (A Child) (No 2).3 1 2 3

[1992] 4 All ER 627. Ibid, para 639(5). Re X (A Child) (No 2) [2021] EWHC 65 (Fam) at paras 2 and 53. See para 4.13 below.

Children of 16 years of age and over The Family Law Reform Act 1969 4.3 The Family Law Reform Act 1969, s 8 makes provision for consent by persons over the age of 16 to surgical, medical and dental treatment:1 ‘(1) The consent of a minor who has attained the age of 16 years to any surgical, medical or dental treatment which, in the absence of consent, would constitute a trespass to his person, shall be as effective as it would be if he were of full age; and where a minor has by virtue of this section given an effective consent to any treatment it shall not be necessary to obtain any consent for it from his parent or guardian. ‘(2) In this section “surgical, medical or dental treatment” includes any procedure undertaken for the purposes of diagnosis, and this section applies to any procedure (including, in particular, the administration of an anaesthetic) which is ancillary to any treatment as it applies to that treatment. ‘(3) Nothing in this section shall be construed as making ineffective any consent which would have been effective if this section had not been enacted.’ In Re X (A Child) (No 2) Sir James Munby specifically considered the effect of s 8 of the Family Law Reform Act 1969 and stated: ‘For the purposes of section 8 we are concerned only with legal capacity; the effect of the statute, in relation to its specific subject matter (medical treatment) is, as it were, to reduce the age of majority from 18 to 16 – that, and no more. Section 8 is not concerned with and does not operate so as to deem the child to have mental capacity.’2 110

Deciding for Others – Children 4.4 The consent of a child over the age of 16 is therefore as valid as if it were given by an adult (unless the child lacks the requisite mental capacity), with the caveat that the court can still overrule the child’s decision, typically where the consequence of the child’s decision is likely to be serious and irreversible risk to health or death.3 If the minor does consent, those providing the treatment have a defence to a criminal charge of assault or to a civil claim for damages for trespass to the person, though not to a claim in negligence. 1 The statutory right to consent created by s 8 of the Family Law Reform Act 1969 does not extend to the donation of blood or organs (which does not strictly amount to treatment). However, the common law has recognised that a Gillick-competent child has the right to make such decisions per Lord Donaldson in Re W (A Minor) (Medical Treatment) [1993] Fam 64 at para 76. 2 Re X (A Child) (No 2) [2021] EWHC 65 (Fam) at para 56. 3 Ibid, at paras 2 and 53. Sir James Munby affirmed the ‘conventional wisdom’ founded in the decisions of Re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11 and Re W [1993] Fam 64 that the decision of a child of 16 or 17 years to either consent or to object to treatment would not necessarily be determinative where the ‘consequence of that decision is likely to be serious risk to health or death’ and that in such circumstances the court retains the power to either veto some procedure to which the child has consented or to direct that the child should undergo some procedure to which they are objecting. See para 4.13 below.

Children aged 16–17 – capacity 4.4 In enacting the Family Law Reform Act 1969 Parliament created the presumption that once they have reached the age of 16, children have the relevant mental capacity to make decisions concerning medical treatment. This is reinforced by s 1 of the MCA: a person ‘must be assumed to have capacity unless it is established that he lacks capacity’ (s 1(2)).1 The MCA does not generally apply until a child reaches the age of 16.2 Most of the MCA applies to young people aged 16–17 years,3 with four exceptions: (a) (b) (c) (d)

the child’s ability to make an advance decision to refuse medical treatment;4 the child’s ability to make a Lasting Power of Attorney;5 the Court of Protection’s power to make a statutory will;6 and the Deprivation of Liberty Safeguards (‘DoLS’).7

For a child over the age of 16, the test of capacity is the same as for adults under the MCA.8 A child over the age of 16 who lacks capacity by reference to ss 2 and 3 of the MCA will not be able to provide valid consent. The parents of an incapacitous child aged 16–17 years old will be able to provide consent for them in respect of medical treatment so long as the provision of that treatment does not also amount to a deprivation of liberty.9 1

The MCA Code of Practice states that ‘[t]he Act’s starting point is to confirm in legislation that it should be assumed that an adult (aged 16 or over) has full legal capacity to make decisions for themselves (the right to autonomy) unless it can be shown that they lack capacity to make a decision for themselves at the time the decision is made. This is known as the presumption of capacity’ (Department of Constitutional Affairs, Mental Capacity Act 2005 Code of Practice (TSO, 2007), p 15, para 1.2).

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4.4  Deciding for Others – Children 2 MCA, s 2(5). There are two exceptions to this general rule: (1) the Court of Protection may take decisions about the property or finances of a child under 16 where the court considers that the child will still lack capacity to make decisions in respect of these matters when they reach 18 (s 2(6) and s 18(3) of the MCA); (2) there is no lower age limit when considering the criminal offence of ill treatment or wilful neglect of an incapable child under s 44 of the MCA. 3 See Mental Capacity Act 2005 Code of Practice, Ch12. For the purposes of the MCA Code of Practice, ‘young people’ refers to people aged 16–17 and ‘children’ refers to people aged below 16: this differs from the Children Act 1989 (and the law more generally) where the term ‘child’ refers to people under the age of 18. 4 MCA, s 24(1). 5 MCA, s 9(2)(c). 6 MCA, s 18(2). 7 MCA, Sch A1 para 13. The Liberty Protection Safeguards, which will ultimately replace DoLS, will apply to persons aged 16 and above; see Department of Health and Social Care’s Guidance, Liberty Protection Safeguards: what they are (August 2021): see bit.ly/DHSCSafeguards-Aug-21. Pending these, authorisation of the court is required to deprive a 16–17 year old of their liberty as parental consent is not sufficient: Re D (A Child) [2019] UKSC 42, [2020] 2 All ER 399. 8 See Chapter 2: Consent & Capacity – Adults. 9 See Re D (A Child) [2019] UKSC 42, [2020] 2 All ER 399.

Children under the age of 16 – Gillick competence 4.5 Even prior to the implementation of the Family Law Reform Act 1969, the assumption was that a sufficiently mature minor was able to give effective consent to treatment without the need for doctors to obtain parental approval.1 However, in the early 1980s, the controversy surrounding the provision of contraceptive advice to children caused the capacity of children to be considered in detail by the House of Lords in Gillick v West Norfolk and Wisbech AHA.2 Gillick confirmed that children of any age may have the capacity to consent to treatment without the involvement of their parents. What is required is that they are of sufficient maturity and understanding to take a decision of the seriousness in question.3 In other words, they must be able to understand the general nature and effect of what is proposed and be able to balance the factors for and against the treatment in the same way as an adult. As stated by Lord Scarman: ‘I would hold that as a matter of law the parental right to determine whether or not their minor child below the age of 16 will have medical treatment terminates if and when the child achieves a sufficient understanding and intelligence to enable him or her to understand fully what is proposed. It will be a question of fact whether a child seeking advice has sufficient understanding of what is involved to give a consent valid in law. Until the child achieves the capacity to consent, the parental right to make the decision continues save only in exceptional circumstances.’4 In Re R (A Minor) (Wardship: Consent to Treatment) Lord Donaldson MR summarised the Gillick competence test, stating that: ‘What is involved is not merely an ability to understand the nature of the proposed treatment … but a full understanding and appreciation of the consequences both of the treatment in terms of intended and possible side effects and, equally important, the anticipated consequences of a failure to treat.’5

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Deciding for Others – Children 4.6 In Re JA (A Minor)6 Baker J said: ‘To be Gillick competent, a child must: (a) understand the nature and implications of the treatment, which would include the likely effects and potential side effects; (b) understand the implications of not pursuing the treatment, including the nature, likely progress and consequences of any illness that would result from not receiving the treatment; (c) retain the above information long enough for the decision making process to take place; and (d) be of sufficient intelligence and maturity to weigh up the information and arrive at a decision.’7 The effect of a finding that the child is Gillick competent to consent to the treatment is that it can be given without further consent needing to be obtained from parents or the court. Thus, in A (A Child),8 Mostyn J determined that a 13-year-old girl was competent to decide to have a termination, which he regarded as ‘the end of the matter’ (although it should be noted that the decision made by A accorded with that of the clinicians as to the outcome which was in her best interests).9 The above case law strongly suggests that the bar for Gillick competence may be higher for capacity under s 3 of the MCA, since under the MCA the patient does not need ‘a full understanding of the consequences’ but only an understanding of and ability to weigh the ‘salient factors’ relevant to the decision.10 The House of Lords in Gillick considered that doctors would consult parents as to treatment in most cases. However, importantly, such consultation would be permissible only with a Gillick competent child’s consent: if such a Gillick competent child wishes to keep the matter confidential, they are fully entitled to confidentiality.11 1 Skegg, Consent to Medical Procedures on Minors (1973) 36 MLR 370. 2 [1986] AC 112, [1985] 3 WLR 830, [1985] 3 All ER 402. 3 [1986] AC 112 at 189A–189E. 4 Ibid, 188H. 5 [1992] Fam 11 at 26A. 6 [2014] EWHC 1135 (Fam). 7 Ibid, para 68. 8 A (A Child) [2014] EWHC 1445 (Fam). 9 In E & F (Minors: Blood Transfusion) [2021] EWCA Civ 1888, the Court of Appeal observed of Re A that Mostyn J ‘was not asked to make a welfare decision and his words cannot be taken out of context to suggest that the court had no welfare jurisdiction, however improbable it is to see it being exercised against the wishes of a young person in a case of that nature.’ That firmly indicates that had the decision to have a termination not accorded with the views of the clinicians, an application could have been made to override it. 10 See Chapter 2: Consent & Capacity – Adults at para 2.14. 11 Per Lord Scarman, Gillick v West Norfolk at [1986] AC 112 at 189. In relation to advice and treatment related to abortion, contraception and reproductive health: R (on the application of Axon) v Secretary of State for Health and Family Planning Association [2006] EWHC 37 (Admin), [2006] QB 539. The decision of Axon was applied in PD v SD [2015] EWHC 4103 (Fam), [2016] Fam Law 561 where a 16 year old living with local authority foster carers was granted a declaration that the local authority should not provide any information to his adoptive parents about his day-to-day life nor about his assessment and possible gender reassignment treatment.

Bell v Tavistock 4.6 The closer a child is to the age of 16, the more likely the determination that they are Gillick competent.1 However, as with adults, capacity is specific 113

4.6  Deciding for Others – Children to the actual decision to be made, and Gillick competence must be assessed discretely for each separate investigation or treatment proposed. A child may be Gillick competent in respect of some decisions about treatment but not others. In Bell v Tavistock2 the Divisional Court considered a judicial review of the policy and practice of the Tavistock and Portman NHS Foundation Trust, through its Gender Identity Development Service, to refer children under the age of 16, who are experiencing gender dysphoria, to paediatric endocrinologists to then be prescribed puberty suppressing hormones (also referred to as ‘puberty blockers’). The Trust would only make such a referral if the child was assessed to benefit from such treatment and was capable of giving consent to puberty blockers. The Divisional Court found no illegality in the policy or practice of the Tavistock (or affiliated Trusts). However, the Divisional Court went on to grant a declaration specifying what informed consent would require in these circumstances, saying: ‘It follows that to achieve Gillick competence the child or young person would have to understand not simply the implications of taking PBs but those of progressing to cross-sex hormones. The relevant information therefore that a child would have to understand, retain and weigh up in order to have the requisite competence in relation to PBs, would be as follows: (i) the immediate consequences of the treatment in physical and psychological terms; (ii) the fact that the vast majority of patients taking PBs go on to CSH and therefore that s/he is on a pathway to much greater medical interventions; (iii) the relationship between taking CSH and subsequent surgery, with the implications of such surgery; (iv) the fact that CSH may well lead to a loss of fertility; (v) the impact of CSH on sexual function; (vi) the impact that taking this step on this treatment pathway may have on future and life-long relationships; (vii) the unknown physical consequences of taking PBs; and (viii) the fact that the evidence base for this treatment is as yet highly uncertain.’3 The Divisional Court also gave general guidance that it ‘may be appropriate’ to obtain the sanction of the court before prescribing puberty blockers not only for children under 16 but also for 16 or 17 year olds if there was any doubt about the long-term best interests of the child in question. In a highly critical judgment, the Court of Appeal subsequently overturned this decision4 and held that the Divisional Court was wrong to have granted the declaration and guidance and, that in so doing, it had imposed an improper restriction on the Gillick test of competence.5 The court said that: ‘The ratio decidendi of Gillick was that it was for doctors and not judges to decide on the capacity of a person under 16 to consent to medical treatment.’6 The court considered that it is a matter for clinicians exercising their judgment, tailored to the patient in question, how to explain matters to ensure that the giving or refusal of consent is properly informed: it was not for the court effectively to give them a ‘manual’ about how to do so. The Court of Appeal went on to state that there was nothing so unique about the administration of puberty blockers that required an application to the court, although acknowledged that an application might be necessary in cases of dispute.7 114

Deciding for Others – Children 4.8 Following this decision, it is clear that, provided clinicians have satisfied themselves that a child under 16 is Gillick competent and have obtained properly informed consent from that child, the consent is valid. Absent any dispute, therefore no further steps need to be taken. 1 The UN Convention on the Rights of the Child (‘UNCRC’), Art 14(2): ‘States Parties shall respect the rights and duties of the parents and, when applicable, legal guardians, to provide direction to the child in the exercise of his or her right in a manner consistent with the evolving capacities of the child.’ 2 Bell and Mrs A v The Tavistock and Portman NHS Trust [2020] EWHC 3274 (Admin). 3 Ibid, para 138. 4 Bell v Tavistock [2021] EWCA Civ 1363. 5 Ibid, para 94. 6 Ibid, para 76. 7 Ibid, paras 48 and 89.

Who determines competence? 4.7 Who is to judge whether the child has the relevant competence? Following the Court of Appeal decision in Bell v Tavistock, in the first place this should be the attending doctors, who must form an opinion on the matter in accordance with accepted practice. However, practitioners should be cautious when dealing with assertions by medical staff that a patient lacks competence. It will be important to confirm, first, that the doctor concerned has experience and understanding of the issues considered by the court to be relevant to such an assessment; secondly, it is critical to ensure that the assessment has been rigorously conducted and carefully documented. Where the decision is that a patient lacks Gillick competence, the doctor performing the assessment must identify and note the specific reason for such a conclusion, especially with an older child. If parents or others with a legitimate interest disagree with the medical assessment of a child’s competence in respect of the proposed treatment, then the final arbiter will be a court. In the context of such a dispute, Gillick competence is a question of fact for the judge. Whilst appropriate attention must be paid to the opinion of medical experts, those opinions need to be considered in the context of all the other evidence. As always in children’s proceedings, the roles of the court and the expert are distinct. It is the court that is in a position to weigh up expert evidence against the other evidence and make the final determination.1 1 See A County Council v KD & L [2005] EWHC 144 (Fam) per Charles J.

Gillick competence and best interests 4.8 Case law suggests that in the past the courts have been reluctant to find a child Gillick competent when it has appeared that the consequence would be an inevitable and painful death. Re E (A Minor)1 concerned a child who was nearly 16 and was a devout Jehovah’s Witness. He refused to consent to blood transfusions which were a necessary part of treatment for leukaemia. His parents also refused to consent. In relation to Gillick competence Ward J concluded that E was: ‘a boy of sufficient intelligence to be able to take decisions about his own well-being, but I also find that there is a range of decisions of which some 115

4.8  Deciding for Others – Children are outside his ability fully to grasp their implications. Impressed though I was by his obvious intelligence, by his calm discussion of the implications, by his assertion even that he would refuse well knowing that he may die as a result, in my judgment A does not have a full understanding of the whole implication of what the refusal of that treatment involves. ‘I am quite satisfied that A does not have any sufficient comprehension of the pain he has yet to suffer, of the fear that he will be undergoing, of the distress not only occasioned by that fear but also – and importantly – the distress he will inevitably suffer as he, a loving son, helplessly watches his parents’ and his family’s distress. They are a close family, and they are a brave family, but I find that he has no realisation of the full implications which lie before him as to the process of dying. He may have some concept of the fact that he will die, but as to the manner of his death and to the extent of his and his family’s suffering I find he has not the ability to turn his mind to it nor the will to do so. Who can blame him for that?’2 E did not have full understanding of the implications of a refusal of blood transfusions, and so was found not of sufficient understanding, intelligence and maturity to give full and informed consent. The factors which Ward J sets out as being necessary to understand in order for a child to demonstrate Gillick competence indicate that the bar for competence is set higher than the test under the MCA. The authors, however, consider that the better analytical approach is to separate the two issues of competence and best interests, even if the end result is that the court overrides the decision of a Gillick competent child. It is well established that the court can override the competent refusal of a child to treatment offered in their best interests,3 and approaching it on this basis would appear intellectually more coherent than demanding a level of understanding which is not required of an adult. 1 [1993] 1 FLR 386 (per Ward J). 2 Ibid, 391A. 3 See para 4.10 below.

C  THE CHILD’S ABILITY TO REFUSE 4.9 The uninformed observer might be forgiven for expecting that, as with adults, the principles governing refusal of treatment would be the same as those for authorising treatment. However, this is not the case. The system is biased in favour of children receiving treatment, to avoid their being deprived of care which, objectively, it is in their best interests to receive. There is logic in this position because the consequences of refusing treatment recommended by a doctor will usually be far more serious than those of accepting such treatment. Furthermore in the majority of cases, a child’s refusal of treatment which clinicians consider to be necessary and in their best interests will indicate a dispute between the child and their treating clinicians.

A refusal by a minor of any age can be overridden by the court 4.10 Even a Gillick competent or capacitous decision of a minor may be overridden by the court under its inherent jurisdiction if the court considers it 116

Deciding for Others – Children 4.10 to be in the minor’s best interests to do so. Since, following Bell v Tavistock in the Court of Appeal, there is no requirement to bring certain categories of case to the court for approval, the cases considering this issue will almost invariably arise from a minor’s refusal of treatment (rather than their consent.). Difficult decisions face the court where a minor is approaching the age of 18 since, once 18, they are presumed to have capacity to refuse medical treatment, and a capacitous refusal is determinative. It is therefore in these cases that the courts have focused most intensely on the impact of the minor’s choice. In Re W, Balcombe LJ suggested that the fact that the court had the power to exercise its inherent jurisdiction in relation to 16-year-olds did not mean that the court should exercise its discretion in a moral vacuum: ‘Undoubtedly the philosophy behind section 8 of the Act of 1969, as well as behind the decision of the House of Lords in Gillick’s case is that, as children approach the age of majority, they are increasingly able to take their own decisions concerning their medical treatment. In logic there can be no difference between an ability to consent to treatment and an ability to refuse treatment … Accordingly the older the child concerned the greater the weight the court should give to its wishes, certainly in the field of medical treatment.’1 Balcombe LJ saw this approach as an application of the principle of the paramountcy of the child’s welfare, noting that: ‘it will normally be in the best interests of a child of sufficient age and understanding to make an informed decision that the court should respect the child’s integrity as a human being and should not lightly override its decision on such a personal matter as medical treatment, all the more so if that treatment is invasive.’2 He went on: ‘… the court exercising the inherent jurisdiction in relation to a 16 or 17 year old child who is not mentally incompetent will, as a matter of course, ascertain the wishes of the child and will approach its decision with a strong predilection to give effect to the child’s wishes …’3 In Re P (Minor) Johnson J went further, observing that where the court has to decide whether to authorise treatment required for continued life by a child approaching the age of 18, it must consider whether to override the wishes of a child: ‘… when the likelihood is that all that will have been achieved will have been deferment of an inevitable death and for a matter only of months.’4 Nevertheless, an underlying inelasticity in the court’s approach to medical treatment decisions involving children approaching their 18th birthday is confirmed by Johnson J’s conclusion, where – guided by the words of Nolan LJ in Re W – he stated: ‘In general terms the present state of the law is that an individual who has reached the age of eighteen is free to do with his life what he wishes, but it is the duty of the court to ensure so far as it can that children survive to attain that age.’5 117

4.10  Deciding for Others – Children In Re W, Balcombe LJ explained that: ‘… if the court’s powers are to be meaningful, there must come a point at which the court, while not disregarding the child’s wishes, can override them in the child’s own best interests, objectively considered. Clearly such a point will have come if the child is seeking to refuse treatment in circumstances which will in all probability lead to the death of the child or to severe permanent injury.’6 The effect of this is that a decision as to whether or not a child is competent may not ultimately determine the application, and may not even be necessary. In some cases, it may be contrary to a minor’s best interests to embark on a determination of capacity which will not be conclusive, if the applicant Trust indicates that it would seek the same outcome under the court’s inherent jurisdiction if the minor is found to be capacitous. As well as being an unnecessary use of public funding and resources, a contested hearing on capacity may be damaging to the minor’s wellbeing and to their relationship with the treating team.7 The majority of reported cases reflect the tendency of courts to invoke the inherent jurisdiction to protect the child’s physical integrity and right to life, rather than promoting their autonomy by confirming the validity of the child’s decision, but as discussed below, this is not invariably the case.8 1 2 3 4

Re W (A Minor) (Medical Treatment: Court’s Jurisdiction) [1993] Fam 64 at para 88. Ibid, 88D–88E. Ibid, 88E–88F. Re P (Minor) [2004] 2 FLR 1117 at 9. It was surprising that there was no mention of the European Convention on Human Rights in Johnson J’s judgment. Such a case was Re E (A Minor) [1993] 1 FLR 386 where a 15-year-old boy’s refusal of blood products was overridden by the court. When E reached 18 he exercised his unassailable right to refuse blood products and died (as noted by Johnson J in ibid at 8). 5 Re W (see n1 above) at 94C per Nolan LJ. 6 Ibid, 88F. 7 This was the course adopted, after hearing argument in a preliminary hearing (unreported), in the case subsequently reported as Cambridge University Hospitals NHS Foundation Trust v GW [2021] EWHC 2105 (Fam). The Trust confirmed that it would seek orders under the inherent jurisdiction if GW were found to have the requisite capacity and so the proceedings were transferred from the Court of Protection into the High Court without considering evidence as to capacity. 8 See paras 4.24–4.30 below.

Compulsory treatment and children’s rights European Convention on Human Rights 4.11 A proposal for compulsory treatment must now be scrutinised with the HRA in mind. Article 8(1) of the European Convention on Human Rights protects the moral and bodily integrity of a person from unjustified assault.1 It thus includes a right not to be subjected to compulsory medical interference.2 The fundamental principle of medical law that a competent adult can refuse medical treatment, even if the decision to do so is objectively irrational or would result in death, is protected by Art 8.3 However, this is a right which, by virtue of Art 8(2), may be justifiably interfered with on grounds of the protection of health or morals: as stated by Kilkelly:4 ‘Compulsory medical treatment … will not infringe the Convention as long as there is proportionality between the interference which it creates and the 118

Deciding for Others – Children 4.11 need to protect the public interest which it serves. This has been found to be particularly important where children are concerned, because they have limited possibilities to protect their own rights.’5 For treatment against a child’s wishes to be lawful, there must also be compliance with the procedural safeguards implicit in Art 8(2). As the court emphasised in in X v Finland: ‘In the context of forced administration of medication, the domestic law must provide some protection to the individual against arbitrary interference with his or her rights under Article 8.’6 The involvement of the court and the court’s duty to afford ‘great attention’ to the express wishes and feelings of a child old enough to be able to express sensible views7 will clearly provide such protection and thus underscores the importance of bringing cases in which a child refuses medical treatment to court. In An NHS Trust v Y, the Supreme Court said: ‘If, at the end of the medical process, it is apparent that the way forward is finely balanced, or there is a difference of medical opinion, or a lack of agreement to a proposed course of action from those with an interest in the patients welfare, a court application can and should be made. As the decisions of the European court underline, this possibility of approaching a court in the event of doubts as to the best interests of the patient is an essential part of the protection of human rights.’8 Some academics have argued for a more radical interpretation of a child’s rights, which would circumscribe the ability of the court to override a competent refusal of treatment. As observed by J Fortin: ‘… splicing the Gillick competence test onto Article 8 rights suggests that mature teenagers now have complete autonomy in all matters that they fully comprehend, whether or not they are consenting to a procedure such as medical treatment or refusing it. Such an approach would accomplish a radical change in legal principles governing this area of law … Logically … it would not be enough merely to withdraw parent’s legal powers over their teenagers. The courts should also lose their own right to override the wishes of a Gillick competent teenager intent on self-destruction. Consequently, they could not, for example, argue that despite the teenager having the right under Article 8 to personal autonomy and dignity, it is necessary, under Article 8(2) to force him to undergo life sustaining treatment, by virtue of his minor status’.9 Outside the field of medical treatment decisions, various dicta in cases involving children support an increase in the court’s appreciation of the child’s autonomy. In Mabon v Mabon Thorpe LJ stated: ‘Unless we in this jurisdiction are to fall out of step with similar societies as they safeguard Article 12 [of the UN Convention on the Rights of the Child10] rights, we must, in the case of articulate teenagers, accept that the right to freedom of expression and participation outweighs the paternalistic judgment of welfare.’11 Citing this extract from Mabon, in Axon Silber J commented that: ‘… the right of young people to make decisions about their own lives by themselves at the expense of the views of their parents has now become an increasingly important and accepted feature of family life.’12 119

4.11  Deciding for Others – Children Nevertheless, the editors of Mason and McCall Smith doubt whether the HRA (including the application of Arts 2, 3, 5 and 8) requires a change in the courts’ approach to refusal of consent by a Gillick competent child. They point to the doctrines of the margin of appreciation and proportionality and conclude that: ‘… [t]he English courts have made a concerted effort to demonstrate their desire to find a balance in the cases and there is little in [European Court of Human Rights’] jurisprudence that would lead them to upset that delicate equilibrium.’13 The case law which has followed the enactment of the HRA has confirmed this view. In Re X (A Child) (No 2) the court comprehensively rejected the argument advanced on behalf of the child that following the HRA and other developments in the law, the refusal of life-saving medical treatment by a ‘Gillick competent’ child should be determinative. Following a detailed analysis of Arts 2, 3, 5, 8, 9 and 14 of the European Convention on Human Rights and Strasbourg case law, Sir James Munby concluded that: ‘… there is nothing in the jurisprudence of the European Convention which throws any doubt on the continued validity of In re R (A Minor) (Wardship: Consent to Treatment)14 and In re W (A Minor) (Medical Treatment: Courts Jurisdiction),15 nor indeed anything which even begins to suggest the need for any judicial re-evaluation of what they establish.’16 The Art 8 protection means that, when performing the best interests assessment, courts will usually override the wishes of a child over the age of 16 or a Gillick competent child only in exceptional circumstances – for example, where it is necessary to save life.17 1

X and Y v Netherlands (1985) 8 EHRR 235; Peters v Netherlands 77A DR 75 (1994) at 79, indicating that unwanted medical intervention (the taking of urine samples) is an infringement of Art 8. And see also reference to X v Austria and the European Court of Justice decision in the HIV case cited at footnotes 1 and 2 of Nys, Physician Involvement in a Patient’s death – a Continental European Perspective (1999) 7(2) Med L Rev 209. 2 Re A (Children) (Conjoined Twins: Surgical Separation) [2000] 4 All ER 961, [2000] 3 FCR 577, [2000] 1 FLR 1, [2001] Fam Law 18, CA. See also YF v Turkey [2003] 39 EHRR 34 at para 33: ‘a person’s body concerns the most intimate aspect of private life. Thus, a compulsory medical intervention, even if it is of minor importance, constitutes an interference with this right.’ 3 Treatment in the absence of consent (including once consent has been withdrawn) will constitute an assault: Re C (Adult: Refusal of Treatment) [1994] 1 All ER 819; Re B (Adult: Refusal of Medical Treatment) [2002] All ER 449; Pretty v UK [2002] 2 FLR 45 and see Chapter 2: Consent & Capacity – Adults. 4 Kilkelly, The Child and the European Convention on Human Rights (Dartmouth Publishing, 1999). 5 Ibid, p 150, citing JR, GR, RR & YR v Switzerland No 22398/93 Dec 5/4/95, DR 81 at 61. 6 X v Finland [2012] ECHR 1371 at para 217. 7 Re X (A Child) (No 2) [2021] EWHC 65 (Fam) at paras 22–26. 8 An NHS Trust (Respondents) v Y (Appellants) [2018] UKSC 46 at para 125. 9 J Fortin, Accommodating Children’s Rights in a Post Human Rights Era (2006) 69 MLR 299. 10 See para 4.12 below. 11 Mabon v Mabon [2005] 3 WLR 460 per Thorpe LJ at para 28. 12 R (on the application of Axon) v Secretary of State for Health and Family Planning Association [2006] EWCA 37 (Admin), [2006] All ER (D) at para 79. 13 G T Laurie, S H E Harmon, E S Dove, Mason and McCall Smith’s Law and Medical Ethics (11th edn, Oxford, 2019), p 341, para 10.15. 14 [1992] Fam 11. 15 [1993] Fam 64. 16 Re X (No 2) (see n7 above) at para 158, the decision is discussed further below at para 4.13. 17 See para 4.23 below.

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Deciding for Others – Children 4.13

United Nations Convention on the Rights of the Child 4.12 The United Nations Convention on the Rights of the Child (‘UNCRC’), by Art 12(1), requires that contracting states: ‘shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child’. Article 14(1) requires respect for ‘the right of the child to freedom of thought, conscience and religion’. Article 12 or Art 14 UNCRC do not afford true ‘substantive’ rights in domestic law, the UNCRC not having been enacted by Parliament. They are perhaps best viewed as a ‘refracted rights’ by operation of the prism of Art 8 of the ECHR which does have domestic effect through the HRA.1 In this light, the UNCRC has been increasingly referred to as an aid to interpretation in domestic cases,2 and has also been considered in Strasbourg by the ECtHR.3 As in the case of the more familiar rights under the ECHR, these rights do not impact on the overall position that the court can override the Gillick competent or capacitous decision of a minor. They will be considered as part of the best interests decision which the court is required to make. 1

By analogy see H (H) v Deputy Prosecutor of the Italian Republic, Genoa [2012] UKSC 25 at paras 33 and 155. 2 Some prominent examples where Art 12 (the child’s right to be heard) has been considered by the domestic courts are: Mabon v Mabon [2005] 3 WLR 460; R (Axon) v Secretary of State for Health (Family Planning Association Intervening) [2006] QB 539 at para 64; De L v H [2009] EWHC 3074; Re S (Transfer of Residence) [2010] EWHC 192 at para 22; Re G (Abduction: Children’s Objections) [2010] EWCA Civ 1232 (children seeing judges); Re M (Abduction: Zimbabwe) [2007] UKHL 55 at para 46 (separate representation in Hague Abduction cases); Re W (Abduction: Child’s Objections) [2010] EWCA Civ 634; Cambra v Jones (Contempt Proceedings: Child Joined as Party) [2014] EWHC 913 (Fam); X (A Child acting by her Children’s Guardian) v Y [2021] EWHC 2139 at paras 37–39; Wigan Metropolitan Borough Council v W [2021] EWHC 1982 (Fam) at paras 67–71. See also: Gilmore Use of the UNCRC in Family Law Cases in England and Wales (2017) International Journal of Children’s Rights Vol 25, No.2, 500. 3 See, for example, Keegan v Ireland (1994) 18 EHRR 342, referring at para 50 to Art 7 (right to be cared for by his parents); Costello-Roberts v UK (1993) 19 EHRR 112 European Court of Human Rights, referring at para 35 to Art 16 (right to respect for private life).

Re X (A Child) (No 2) 4.13 The conclusion that no fundamental change to the court’s approach in light of Strasbourg jurisprudence and the MCA was reached by Sir James Munby in Re X (A Child) (No 2)1 which considered a challenge to the ‘conventional wisdom’ of Re R and Re W2 that no child, whether Gillick competent or having reached the age of 16, has an absolute right to refuse medical treatment. The conventional principles were confirmed following a detailed examination of legislative developments and the case law. The application concerned X, a 15-year-old girl who suffered from sickle cell syndrome and was a Jehovah’s Witness, as was her mother. As a consequence of her medical condition X required admission to hospital and, in the opinion 121

4.13  Deciding for Others – Children of her treating clinicians, life-saving treatment with a blood transfusion. It was common ground that X was Gillick competent and refusing consent to a blood transfusion. On behalf of the child it was submitted that the MCA had ousted the inherent jurisdiction of the court such that a person aged 16 or over is presumed to have capacity and has the exclusive right to decide his or her own medical treatment. In rejecting this argument, Sir James Munby noted that capacity and Gillick competence are historically and conceptually distinct: capacity, or lack thereof, derives from ‘an impairment of or disturbance of the functioning of the mind or brain’,3 whereas Gillick competence is tied to the normal development over time of the typical child. He noted that: ‘… the 2005 Act has nothing to say relevant to the medical or surgical treatment of children who are not yet 16; that in relation to children who have reached the age of 16 it has nothing to say except where the child lacks mental capacity as defined in sections 2(1) and 3(1); and, accordingly, that it has nothing to say about children of whatever age who are Gillick competent.’4 Citing the judgment of Lady Black JSC in In Re D (A Child),5 the court concluded that there was nothing in the MCA which cast doubt on the validity of the ‘conventional wisdom’ in Re R and Re W. Summarising the reasoning of both those judgments in what he described as ‘the Donaldson analysis,’ he stated: ‘In relation to the 2005 Act, as before, the Donaldson analysis continues to apply …: ‘(1) Until the child reaches the age of 16 the relevant inquiry is as to whether the child is Gillick competent. ‘(2)  Once the child reaches the age of 16: (i) the issue of Gillick competence falls away, and (ii) the child is assumed to have legal capacity in accordance with section 8, unless (iii) the child is shown to lack mental capacity as defined in sections 2(1) and 3(1) of the Mental Capacity Act 2005.’6 It was argued on behalf of the child that the common law position identified nearly 30 years ago by the Court of Appeal in Re R and Re W was now incompatible with the child’s rights as protected by Arts 3, 5, 8, 9 and 14 of the ECHR. After a careful and extended analysis of these different rights,7 the court concluded that the application of the principles established by Re R and Re W did not, of itself, involve any breach of the ECHR and that, for those qualified rights, preserving the life of a child until adulthood was a legitimate aim. Significant reliance was placed, on behalf of the child, on the decision of the Supreme Court of Canada in AC v Manitoba8 which concerned a 14-yearold girl who was refusing a blood transfusion. It was submitted on behalf of X that this case was authority for the proposition that the decision of a Gillick competent child or a child aged 16 or above is always determinative in relation to medical treatment. Having carefully analysed both the majority and dissenting judgments in addition to a number of subsequent Canadian cases,9 the court held that the principles in Re R and Re W emerged unscathed and there was nothing in any of the Canadian authorities ‘which even begins to suggest the need for any judicial re-evaluation of that they establish.’10 122

Deciding for Others – Children 4.13 Having dismissed the challenge by X and confirmed that no child, whether Gillick competent or having reached the age of 16, has an absolute right to refuse medical treatment, the court considered whether to make an anticipatory or prospective order authorising the administration of blood transfusions in the event that X suffered further life-threatening sickle-cell crises in the future. Although it was accepted that the court has jurisdiction to make such a contingent or anticipatory order,11 the court declined to do so in this case. It was submitted on behalf of X that: (1) determining whether or not a medical treatment was required was highly fact specific, particularly in the context of whether blood transfusions were required; (2) granting a rolling order would run the risk of privileging medical paternalism over judicial protection; (3) there was a risk in a case such as X’s of discrimination and religious stereotyping, based on the erroneous assumption that blood transfusions were always necessary whenever recommended by a clinician and that a patient who was a Jehovah’s Witnesses was always wrong to refuse such a procedure; and (4) X had not yet had the opportunity to test the medical evidence rigorously, which would be a pre-requisite if there were to be a rolling order lasting two years. The court agreed with the thrust of these submissions and was not persuaded that a ‘rolling order’ stretching over a period of two years should be made. In light of the above, we suggest that the level of patient autonomy protected by Art 8 means that the courts can appropriately interfere with a Gillick competent child’s refusal of treatment in only the most exceptional circumstances. This should preferably be confined to some (but not necessarily all) cases in which overriding a child’s refusal of treatment is necessary to save their life. While an adult has the absolute right to make an unwise or irrational decision which costs them their life, we can legitimately say as a society that our children do not. The principle of affording a minor protection in life and death situations justifies the interference with the principle of affording respect to the wishes of competent children. 1 2

Re X (A Child) (No 2) [2021] EWHC 65 (Fam). In Re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11, CA and In Re W (A Minor) (Medical Treatment: Court’s Jurisdiction) [1993] Fam 64. 3 MCA, s 2(1). 4 Re X (No 2) (see n1 above) at para 76. 5 In Re D (A Child) [2019 UKSC 42 at para 71: ‘I cannot accept the Official Solicitor’s case that the 2005 Act constitutes a complete decision-making framework for the care and treatment of those aged 16 and above who lack capacity, not least because there is an obvious overlap between the reach of the Children Act 1989 and that of the 2005 Act, and I can find nothing in the 2005 Act that could be said to indicate a general rule to the effect that, where it applies, it does so to the exclusion of other common law and statutory provisions’; and at para 90: ‘nothing that I have said is intended to cast any doubt on the powers of the courts, recognised in the early cases to which I have referred, and still available today in both the parens patriae jurisdiction and under statute, notably the Children Act 1989, to make orders in the best interests of children up to the age of majority, with due regard to their wishes and those of their parents, but not dictated by them.’ 6 Re X (No 2) (see n1 above) at para 77. 7 Ibid, paras 106–158. 8 AC v Manitoba (Director of Child and Family Services) 2009 SCC 30. [2009] 2 SCR 181. 9 Carter v Canada (Attorney General) 2015 SCC 5, [2015] 1 SCR 331 (Supreme Court of Canada); AB v CD 2020 BCC A 11 (Court of Appeal for British Columbia); SP v BP 2020 ABQB 331 (Court of Queen’s Bench of Alberta); and PH v Eastern Regional Integrated Health Authority 2010 NLTD 34 (Supreme Court of Newfoundland). 10 Re X (No 2) (see n1 above) at para 104.

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4.13  Deciding for Others – Children 11 For examples of cases in which such orders have been made see In Re S (Adult Patient) (Inherent Jurisdiction: Family Life) [2002] EWHC 2278 (Fam), [2003] 1 FLR 292, paras 50–60, citing In Re R (Adult: Medical Treatment) [1996] 2 FLR 99 and In Re SLS [2002] EWHC 6 (Fam); In Re P (Medical Treatment: Best Interests) [2003] EWHC 2327 (Fam), [2004] 2 FLR 1117; United Lincolnshire Hospitals NHS Trust v CD [2019] EWCOP 24, [2020] 4 WLR 95; Wakefield Metropolitan DC v DN [2019] EWHC 2306 (Fam), [2019] COPLR 525, and Guys and St Thomas’s NHS Foundation Trust v R [2020] EWCOP 4, [2020] 4 WLR 96.

The refusal of a capacitous minor of 16–17 or a Gillick competent child cannot be overridden by the consent of a parent 4.14 In AB v CD,1 an application was brought by the mother of XY, a 15-year-old minor, seeking a declaration that she and the father could provide legal consent on behalf of XY to the administration of puberty blockers. Following the decision of the Divisional Court in Bell v Tavistock,2 there was some uncertainty about the status of parental consent. Prior to that decision, XY had been considered Gillick competent to consent to puberty blockers, but the Divisional Court’s judgment had cast some doubt on the position. XY’s competence had not been re-assessed and Lieven J therefore considered either alternative.3 Having considered the earlier authorities in some detail, Lieven J concluded: ‘The very essence of Gillick is, in my view, that a parent’s right to consent or “determine” treatment cannot trump or overbear the decision of the child. Therefore, the doctors could lawfully advise and treat the child without her mother’s knowledge or consent. In Gillick, the parent did not have the right to know that the treatment was being given, so it makes little sense to assume that the parent could act to stop the child’s decision being operative on whether the treatment takes place or not.’4 She also observed that the contention that a parent had such overriding rights would be ‘very difficult to accept in the light of Art 8 of the ECHR’ and that it was not, in her view, consistent with Gillick.5 In the instant case, parents and child were in agreement. Lieven J said: ‘Therefore, the issue here is whether the parents’ ability to consent disappears once the child achieves Gillick competence in respect of the specific decision even where both the parents and child agree. In my view it does not. The parents retain parental responsibility in law and the rights and duties that go with that. One of those duties is to make a decision as to consent in medical treatment cases where the child cannot do so. The parent cannot use that right to “trump” the child’s decision, so much follows from Gillick, but if the child fails to make a decision then the parent’s ability to do so continues. At the heart of the issue is that the parents’ “right” to consent is always for the purpose of ensuring the child’s best interests. If the child does not, for whatever reason, make the relevant decision then the parents continue to have the responsibility (and thus the right) to give valid consent.’6 She considered that either XY was Gillick competent, but not objecting to her parents’ consent, or not Gillick competent, in which case the parents could consent on her behalf. It was not necessary for the court or clinicians to investigate which route to valid consent applied.7 124

Deciding for Others – Children 4.15 The judgment was cited with approval by the Court of Appeal in Bell v Tavistock,8 although this was not an issue before the court. In a situation where a Gillick competent child is refusing treatment which their parents wish them to have (and to which the parents would be willing to consent), an application to the court will therefore be necessary. Although the issue does not appear to have been considered by the courts, the same will apply to the (less likely) scenario of a capacitous 16–17 year old refusing treatment to which their parents would consent. 1 AB v CD [2021] EWHC 741 (Fam). 2 See para 4.6 above. 3 AB v CD [2021] EWHC 741 (Fam) at para 51. 4 Ibid, para 67. 5 Ibid, para 60. And see para 114. 6 Ibid, para 68. 7 Ibid, para 69. 8 Bell v Tavistock [2021] EWCA Civ 1363 at paras 47–51. See para 4.6 above.

Children under the age of 16 not possessing Gillick competence 4.15 Children under the age of 16 who lack the capacity to consent to treatment cannot validly refuse treatment which is otherwise lawfully authorised. In effect they can be compelled to accept treatment either under the authority of a person with parental responsibility or of the court exercising its inherent or statutory jurisdiction over children. Nevertheless, while such children have no veto over treatment, their views must be taken into consideration when assessing whether treatment is in their best interests. In all cases the court, in deciding whether to give or to refuse consent to medical treatment, must start from the principle that the patient’s wishes should be given effect unless the balance is strongly to the contrary effect.1 A child’s wishes are a very important consideration not only for the court but also for parents and others with parental responsibility in deciding whether themselves to give consent. It is equally important for those making clinical judgements, and in all cases its importance increases with the child’s age and maturity.2 Very difficult practical issues can arise when a child requires long-term treatment necessarily involving their co-operation (for example, kidney dialysis), but actively refuses to comply with that treatment. In these circumstances, attempts to override the child’s refusal by resorting to the court will not provide a solution to a practical medical problem. Where a child’s lack of co-operation with even highly desirable treatment means that it cannot be delivered effectively, it can legitimately be determined that forcing them to undergo the treatment is not in the child’s best interests. In such circumstances, particularly when the treatment is life-saving, it is strongly suggested that the court should be involved.3 1 See Re S (A Minor) (Consent to Medical Treatment) [1994] 2 FLR 106 and para 4.23 below. 2 See Re W (A Minor) (Medical Treatment: Court’s Jurisdiction) [1993] Fam 64 per Lord Donaldson MR at 84A, para (6). This principle was expressly relied on by Cazalet J in A Metropolitan BC v DB [1997] 1 FLR 767. 3 See for example An NHS Trust v DV (A Child) and Re AGK (unreported, 2019) discussed at para 4.23 below.

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4.16  Deciding for Others – Children

D  PARENTS AND THOSE WITH PARENTAL RESPONSIBILITY Power to consent 4.16 The mother of a child will usually have parental responsibility for the child. The father does too if married to – or in a civil partnership with – the mother, registered as the child’s father, or an order of the court has so provided.1 A parent with parental responsibility has the power to consent to treatment unless deprived of it either through lack of their own capacity, or because the entitlement has been modified or removed by order of a court. Where there is no adult with parental responsibility able to provide valid consent, the court may grant a child arrangements order under s 8 of the Children Act 1989 to confer parental responsibility on another person, giving them the power to consent to future treatment.2 The duty of such a person is to give or withhold consent in the best interests of the child and without regard to their own interests. The courts have repeatedly confirmed that parental responsibility exists for the benefit of the child and not for the benefit of the parent.3 A parent’s capacity to consent to the treatment of their child will be assessed in the same way as for a patient personally. A parent aged 16 and above therefore will be presumed to have capacity unless shown not to satisfy the test of capacity under the MCA.4 A parent under the age of 16 will be assessed by reference to the Gillick test. If a parent lacks capacity then they will be unable to give valid consent.5 1 Children Act 1989, ss 2–4. The provisions of the Children Act are more detailed than set out here and in cases of uncertainty, the precise provisions of the statute will need to be consulted. 2 Great Ormond Street Hospital for Children NHS Foundation Trust v MK [2020] EWHC 3476 (Fam): a grandparent with whom the child had lived since infancy. 3 Re J (A Minor) (Wardship: Medical Treatment) [1991] Fam 33. For an alternative view that the parent’s own views should form part of the treatment decision and that this is prevented by an undue focus on individual patient autonomy, see J Herring, Where are the Carers in Healthcare Law and Ethics (2006) and Hardwig, What about the Family? (1990) 20(2) Hastings Centre Report 5. 4 MCA, s 1; see Appendix 1: Mental Capacity Act 2005 and see Chapter 2: Consent & Capacity – Adults. 5 See Great Ormond Street Hospital v MK [2020] EWHC 3476 (Fam) in which the hospital made an application for a declaration because the mother of a seven-year-old child who required open-heart surgery lacked capacity to consent and there was no one with parental responsibility to give consent. The court made a declaration which provided lawful authorisation for the surgery to proceed but also made a ‘lives with’ child arrangements order pursuant to s 8 of the Children Act 1989 in favour of the grandmother with whom the child had been living, giving her the power to consent to future treatment which was thought to be reasonably likely.

Where parental consent is given but a court application may still be required 4.17 It is a fundamental principle of family law that responsibility for making decisions about a child rests with their parents and that – in general – parents are the best people to make decisions about a child.1 Generally speaking, a parent is in a position to understand and weigh up matters and 126

Deciding for Others – Children 4.17 consider what is in the long and short term best interests of their child. As the people who know their child best, and care for them the most, they will be in a position to reach a fully informed decision. In the vast majority of situations the courts will respect and uphold the parents’ views and decision making about their children. Parents’ rights are also a recognised part of family life to which protection is given by Art 8 of the ECHR under the HRA. As such, any interference with those rights by the State must be proportionate.2 The importance of protecting parents’ rights and duties is also set out in Art 5 of the UNCRC: ‘States Parties shall respect the responsibilities, rights and duties of parents or, where applicable, the members of the extended family or community as provided for by local custom, legal guardians or other persons legally responsible for the child, to provide, in a manner consistent with the evolving capabilities of the child, appropriate direction and guidance in the exercise by the child of the rights recognized in the present Convention.’ In AB v CD,3 Lieven J held that the unanimous decision of parents could provide valid consent to the administration of puberty blockers on behalf of their 15-year-old child. The court confirmed that the parents retain the right to consent to treatment even when a child is Gillick competent, except where the parents are seeking to override the decision of the child. In AB it was identified that the only ‘special category’ of case in which the court had found a strict requirement for an application to court in respect of the treatment of a child where both parents have consented, was Re D,4 the case of a non-therapeutic sterilisation of an 11 year old. In all other contexts, including where the parental decision will lead to the child’s life ending, the court had imposed no requirement to make an application. Lieven J acknowledged that there is a range of cases where there does have to be court approval, but ultimately concluded that the administration of puberty blockers did not fall into such a special category, and that rather the focus should be on the specific facts of the case to decide whether an application was necessary. Lieven J concluded that: ‘There are a range of cases where there does have to be Court approval, but this is where there is a clinical disagreement; possible alternative treatment of the medical condition in issue; or the decision is, in the opinion of clinicians, finely balanced. These are fact specific instances rather than examples of any special category of treatment where the court’s role is required simply because of the nature of the treatment.’5 She also considered that an application would be appropriate if clinicians considered that the parents might be under pressure from the child to give consent.6 We suggest that the decision of Lieven J reflects the current position, and aligns with the position in respect of incapacitated adults. Whether a court application is required will therefore be a question to be determined on the facts of each case. 1 2 3

Per Baker J in Re Ashya King [2014] EWHC 2964 (Fam). As assessed in line with the four-part test set out in Bank Mellat v HM Treasury [2014] AC 700 at para 74: see Re K (Forced Marriage: Passport Order) [2020] EWCA Civ 190 at para 44. AB v CD [2021] EWHC 741 (Fam). See para 4.14 above.

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4.17  Deciding for Others – Children 4 Re D (A Minor) (Wardship Sterilisation) [1976] 1 All ER 326. 5 Ibid, para 116. 6 Ibid, paras 127–128. In addition, there may be occasional cases where the decision itself is potentially so controversial that an application would be sensible. In our view the dicta of Ward LJ in Re A (Children) (Conjoined Twins: Surgical Separation) [2000] 4 All ER 961 that it would have been a ‘perfectly acceptable response’ for doctors treating conjoined twins to respect the parent’s wishes and ‘let nature take its course’ without referral to the court because the doctors’ duty of care to the children did not extend to ‘a further duty to refer this impasse to the court’ at 987E–987F is not tenable.

Disputes between parents 4.18 While the general position is that the consent of one parent for treatment will be sufficient, the position concerning immunisation or certain irreversible treatment is different. For example, before a doctor can perform circumcision on a child, the consent of both parents or, in the absence of agreement, the approval of the court is required: ‘in the absence of agreement of those with parental responsibility, [it] ought not to be carried out or arranged by a one-parent carer although she has parental responsibility … Such a decision should not be made without the specific approval of the court.’1 In Re C,2 two sets of parents disagreed in the context of a private law dispute over whether their children, who were aged 4 and 10 respectively should receive the MMR vaccine. The court ordered that the children should undergo the immunisations, and the Court of Appeal dismissed their mothers’ appeals against this order. The court affirmed the general principle that medical decisions should be taken by parents, but that if they are unable to agree, the court will make a decision, with the child’s welfare being the paramount consideration.3 As parental agreement is required before a child undergoes a disputed circumcision and immunisation, it is highly likely that intersex and nontherapeutic cosmetic surgery will also require parental consensus or, in its absence, a court order. There may be other circumstances in which the court’s decision will be necessary in the absence of parental consensus. In Re JS (Disposal of Body),4 the court was asked to prospectively determine a dispute between her parents about the arrangements upon the death of a terminally ill 14-year-old girl. Supported by her mother, the child wished for her body to be frozen by cryonic preservation (a process available in the USA) after her death. The consent of the father, who had not seen the child since 2008, was conditional upon him being permitted to view the child’s body after death, something to which she objected. Jackson J held that he was able to make a prospective order whilst the child was still alive, on the basis that her welfare whilst she was alive could not be adequately protected by a refusal by the court to entertain the question. The court made a specific issue order under s 8 of the Children Act 1989, permitting the mother to make arrangements during the child’s lifetime and for the preservation of her body upon death.5 1

Re J (Specific Issue Orders: Child’s Religious Upbringing and Circumcision) [2000] 1 FLR 571 at 577 per Butler-Sloss P. See also Re S (Children) (Specific Issue Order: Religion: Circumcision) [2004] EWHC 1282 (Fam), [2005] 1 FLR 236; Re L (Children) (Specific Issues: Temporary Leave to Remove from the Jurisdiction: Circumcision) [2016] EWHC 849 (Fam). See also Re P (Circumcision: Child in Care) [2021] EWHC 1616 (Fam) where Cobb J considered the issue of male circumcision within the context of care proceedings.

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Deciding for Others – Children 4.19 2

Re C (Welfare of Child: Immunisation) [2003] 2 FLR 1095 (and see also F v F (MMR Vaccine) [2013] EWHC 2683 (Fam)). 3 See para 4.19 below for consideration of vaccinations generally. 4 [2016] EWHC 2859 (Fam). 5 The mother was appointed sole administrator upon the child’s death of her estate, with power to make arrangements for the viewing and disposal of the body. Injunctions were made against the father to prevent him from interfering with these arrangements.

Disputes between parents and local authorities with parental responsibility 4.19 Where someone other than a parent has been awarded parental responsibility, such as another relation or a public authority,1 doctors should approach that person for authority to treat rather than the natural parents. Depending on the circumstances, it may be good practice to consult the latter, even if they are unable to give valid consent. Parental responsibility may be shared between a local authority and one or more birth parents. In such cases, even if the local authority holds ‘senior’ parental responsibility for a child in its care under s 33(3) of the Children Act 1989 (pursuant to a care order or interim care order), it would be unwise to rely on its exercise of parental responsibility to override parental decisions about significant medical treatment, not least because of the risks of a breach of Art 8 ECHR rights. In the event of a dispute, the issue should be resolved by the court under its inherent jurisdiction, usually with a guardian appointed to represent the child.2 In AB (A Child), Sir James Munby said: ‘Whatever its strict rights may be, a local authority will usually be illadvised to rely upon its parental responsibility under section 33(3)(a) of the 1989 Act as entitling it to authorise medical treatment opposed by parents who also have parental responsibility: see Barnet London Borough Council v AL, para 32, and the discussion in Re C (Children: Power to Choose Forenames), paras 92–95. For a local authority to embark upon care proceedings in such a case merely to clothe it with parental responsibility is likely to be problematic and may well turn out to be ineffective.’3 In Re C (Children: Power to Choose Forenames),4 the Court of Appeal concluded that: ‘there is a small category of cases where, notwithstanding the local authority’s powers under section 33(3)(b) [Children Act] 1989, the consequences of the exercise of a particular act of parental responsibility are so profound and have such an impact on either the child his or herself, and/or the Article 8 rights of those other parties who share parental responsibility with a local authority, that the matter must come before the court for its consideration and determination.’5 In P (Circumcision: Child in Care)6 Cobb J considered that: ‘where a disputed issue of non-therapeutic circumcision arises again in relation to a child in care, it is appropriate for the matter to be referred promptly to the court for resolution.’ Noting that the application had been made by the mother of the child in that case (who was subject to an interim care order), he considered that it might be more appropriate for the local authority to bring the application.7 129

4.19  Deciding for Others – Children Recent authority confirms that not every medical dispute must be referred to the court. In Re H,8 the Court of Appeal held that the routine vaccination of a healthy child is a matter which a local authority can properly consent to and arrange pursuant to its exercise of parental responsibility without requiring an application to the High Court, despite the objections of the child’s biological parents. The court accepted the reasoning in Re C that certain decisions are of such magnitude that they should not be determined by a local authority without all those with parental responsibility having an opportunity to express their view to a court as part of the decision-making process.9 In such cases, the local authority may properly make an application under the High Court’s inherent jurisdiction, in effect asking the court to limit, circumscribe or sanction the use of the power which it already has pursuant to the Children Act 1989 s 33(3)(b).10 However, the court found that routine vaccination did not fall within the class of decision which was so grave as to require an application to the court. King LJ held that: ‘i) Although vaccinations are not compulsory, the scientific evidence now clearly establishes that it is in the best medical interests of children to be vaccinated in accordance with Public Health England’s guidance unless there is a specific contra-indication in an individual case. ‘ii) Under s.33(3)(b) [Children Act] 1989 a local authority with a care order can arrange and consent to a child in its care being vaccinated where it is satisfied that it is in the best interests of that individual child, notwithstanding the objections of parents. ‘iii) The administration of standard or routine vaccinations cannot be regarded as being a ‘serious’ or ‘grave’ matter. Except where there are significant features which suggest that, unusually, it may not be in the best interests of a child to be vaccinated, it is neither necessary nor appropriate for a local authority to refer the matter to the High Court in every case where a parent opposes the proposed vaccination of their child. To do so involves the expenditure of scarce time and resources by the local authority, the unnecessary instruction of expert medical evidence and the use of High Court time which could be better spent dealing with one of the urgent and serious matters which are always awaiting determination in the Family Division. ‘iv) Parental views regarding immunisation must always be taken into account but the matter is not to be determined by the strength of the parental view unless the view has a real bearing on the child’s welfare.’11 The same principle has subsequently been applied to the Covid-19 and winter flu vaccinations where they were part of the national programme approved by the UK Health Security Agency. In Re C (Looked After Child) (Covid-19 Vaccination),12 Poole J held that vaccination programmes ‘may be in the best interests of children even though administering the vaccines is not free from risk.’13 Poole J was satisfied that: ‘under s.33(3)(b) of the Children Act 1989 a local authority with a care order can decide to arrange and consent to a child in its care being vaccinated for

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Deciding for Others – Children 4.19 Covid-19 and/or the winter flu virus notwithstanding the objections of the child’s parents, when (i) such vaccinations are part of an ongoing national programme approved by the UK Health Security Agency, (ii) the child is either not Gillick competent or is Gillick competent and consents, and (iii) the local authority is satisfied that it is necessary to do so in order to safeguard or promote the individual child’s welfare. There is no requirement for any application to be made for the court to authorise such a decision before it is acted upon.’14 C, a child of 12, consented to the vaccines even though their mother did not. Poole J observed that although C might well be Gillick competent, it was unnecessary to determine the point given their consent.15 Had C refused vaccination, that suggests it would have been necessary to determine the issue of competence. Poole J declined to comment on whether a local authority with parental responsibility could override a child’s decision and whether the issue should be brought before the court. The authors consider that the local authority in such circumstances cannot be in a better position than the child’s parents,16 and so where a local authority seeks to consent to treatment (including vaccination) refused by a Gillick competent child, the matter should be referred to the court. In M v H (Private Law Vaccination), MacDonald J considered that it was now very difficult to foresee a case in which vaccination approved for use in children, including vaccinations against the coronavirus that causes Covid-19, would not be endorsed by the court as being in a child’s best interests, in the absence of a credible development in medical science doubting the efficacy or safety of the vaccine or a well-evidenced medical contraindication specific to the child.17 1 See Children Act 1989, s 5. 2 See, eg Kirklees Council v (1) RE (2) SE (3) Leeds Teaching Hospital NHS Trust [2014] EWHC 3182 (Fam) at para 20; Munby P in AB (A Child) [2018] EWFC 3, [2018] 4 WLR 20 I at para 24, relying on Barnet LBC v AL sub nom Re SL (Permission to Vaccinate) [2017] EWHC 125 (Fam) and Re C (Children: Power to Choose Forenames) [2016] EWCA (Civ) 374, [2017] 1 FLR 487. 3 AB (A Child) [2018] EWFC 3L [2018] EWFC 3 at para 24. 4 [2016] EWCA (Civ) 374; the proposed names were ‘Preacher’ and ‘Cyanide’. See also YY (Children: Conduct of the Local Authority) [2021] EWHC 749 (Fam), where a local authority was severely criticised for consenting to the withdrawal of life-sustaining treatment in the absence of parental consent, discussed at para 4.35 below. 5 Ibid, para 104. 6 [2021] EWHC 1616 (Fam). 7 Ibid, para 27(xii). 8 Re H (A Child) (Parental Responsibility: Vaccination) [2020] EWCA Civ 664. 9 Ibid, para 30 (i). 10 Ibid, para 30(ii); see Children Act 1989 s 100. 11 Ibid, para 104. 12 [2021] EWHC 2993 (Fam). 13 Ibid, para 20. 14 Ibid, para 23. 15 Ibid, para 22. 16 See para 4.14 above. 17 M v H (Private Law Vaccination) [2020] EWFC 93 at para 52, considering the comments of the Court of Appeal in Re H (n8 above).

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4.20  Deciding for Others – Children

E  BEST INTERESTS The court – and consideration of alternative dispute resolution 4.20 The court has the ultimate power to consent to or refuse treatment, whatever the views of the child, their parents, and their treating doctors. The jurisdiction of the court is, in the words of Lord Donaldson MR in Re R: ‘not derivative from the parents’ rights and responsibilities but derives from, or is, the delegated performance of the duties of the Crown to protect its subjects and particularly children who are the generations of the future.’1 This can still sometimes be referred to as the court’s parens patriae jurisdiction. The majority of reported cases have arisen because of a disagreement between parents and doctors as to where the child’s best interests lie. In 2005, Hedley J provided the following analysis of the circumstances in which disagreements may result in treatment decisions coming before the court, with the ‘vast majority’ of disagreements falling within categories (ii) and (iii): ‘(i) ‘(ii) ‘(iii) ‘(iv)

where a doctor advocated treatment which parents resisted (for example, a blood transfusion), and a failure to administer such treatment would be an affront to that doctor’s conscience; where a doctor advocated treatment which the parents resisted on grounds, that while reasonable, were contrary to the clinician’s view; where parents wanted treatment, which the clinician could not advise, but the giving of which would not be an affront to conscience; and where the treatment requested would be an affront to conscience.’2

As the more recent case law below suggests, the nature of the disputes which reach the courts has changed in the last few years. There have been several high-profile cases where the clinicians’ evidence was that continuing to provide treatment to a seriously ill child was verging on an affront to their conscience, yet felt unable to refuse further treatment without the approval of the court. Given the heightened emotions which these cases inevitably contain, this is not surprising. In several of these cases, judges have expressed strong support for hospital trusts offering mediation as an alternative to an application to court. In Re Charles Gard, for example, Francis J concluded his first judgment in the case: ‘I have already expressed the opinion that I believe that it would, in all cases like this, be helpful for there to be some form of Issues Resolution Hearing or other form of mediation where the parties can have confidential conversations to see what common ground can be reached between them. I believe that that type of hearing, be it Judge led or some other form of private mediation, would have led to a greater understanding between the parents and the clinical team in this case. I am not saying that it would necessarily have led to a resolution, but I think in many such cases it would and I would like to think that in future cases like this such attempts can be made.’3 Successfully mediated disputes do not, of course, come before the court, so that there is often a reluctance to incur the relatively modest expense of going to mediation, and a view that it is better to press on with an application. The authors consider this unduly pessimistic. Whilst mediation may not resolve the most intractable disputes, the authors’ experience is that the involvement of an 132

Deciding for Others – Children 4.21 experienced and independent mediator, especially at an early stage and before a court application has been discussed, can achieve remarkable results. Even where full resolution cannot be achieved, there may be a measure of agreement such that an inevitable trial is considerably shorter and less acrimonious. 1 2

Re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11 at 200. Portsmouth NHS Trust v Wyatt [2005] EWHC 2293 (Fam) per Hedley J at paras 29–30. Guidance provided to medical professionals also suggests that court applications are primarily appropriate only where parents disagree with medical opinion or they are unable to give valid consent themselves. See, eg Larcher et al, Making Decisions to Limit Treatment in LifeLimiting and Life-Threatening Conditions in Children: A Framework for Practice (2015) 100 Archives of Disease in Childhood, Suppl 2. 3 Also cited as Great Ormond Street Hospital v Yates [2017] EWHC 972. Discussed in more detail at para 4.26 below.

The approach to best interests 4.21 The court’s approach to child treatment decisions is, by necessity, highly fact-specific and the courts have been understandably slow to set out definitive guidance on the application of the ‘best interests’ test.1 The flexibility afforded to the court comes at the expense of certainty for doctors and their legal advisers. The court is tasked with weighing up the advantages and disadvantages of providing, withholding or withdrawing the various treatment options and to balance them in order to determine what the child’s best interests are.2 The court must exercise independent and objective judgment on the basis of all of the available evidence.3 Best interests are not limited to medical interests.4 Professional guidance from the General Medical Council urges doctors to look beyond clinical factors and consider a child’s overall best interests.5 The court will require evidence which goes beyond medical evidence to determine the child’s best interests.6 The views of doctors, other members of the infant’s care team and their parents will all be taken into account to the extent that they touch on the child’s best interests. In NHS Trust v MB7 Holman J provided a helpful summary of the application of the ‘best interests’ test in infant treatment decisions, noting that it was the role and the duty of the court to exercise its own independent and objective judgment: ‘[1] The right and power of the court to do so only arises because the patient, in this case because he is a child, lacks the capacity to make a decision for himself. ‘[2] I am not deciding what decision I might make for myself if I was, hypothetically, in the situation of the patient; nor for a child of my own if in that situation; nor whether the respective decisions of the doctors on the one hand or the parents on the other are reasonable decisions. ‘[3] The matter must be decided by the application of an objective approach or test … That test is the best interests of the patient. Best interests are used in the widest sense and include every kind of consideration capable of impacting on the decision. These include, non−exhaustively, medical, emotional, sensory (pleasure, pain and suffering) and instinctive (the human instinct to survive) considerations. 133

4.21  Deciding for Others – Children ‘[4] It is impossible to weigh such considerations mathematically, but the court must do the best it can to balance all the conflicting considerations in a particular case and see where the final balance of the best interests lies. ‘[5] Considerable weight (Lord Donaldson … MR referred to “a very strong presumption”[8]) must be attached to the prolongation of life because the individual human instinct and desire to survive is strong and must be presumed to be strong in the patient. But it is not absolute, nor necessarily decisive; and may be outweighed if the pleasures and the quality of life are sufficiently small and the pain and suffering or other burdens of living are sufficiently great …[9] ‘[6] All these cases are very fact specific, i.e. they depend entirely on the facts of the individual case. ‘[7] The views and opinions of both the doctors and the parents must be carefully considered. Where, as in this case, the parents spend a great deal of time with their child, their views may have particular value because they know the patient and how he reacts so well; although the court needs to be mindful that the views of any parents may, very understandably, be coloured by their own emotion or sentiment … ‘[8] It is important to stress that the reference is to the views and opinions of the parents. Their own wishes, however understandable in human terms, are wholly irrelevant to consideration of the objective best interests of the child save to the extent in any given case that they may illuminate the quality and value to the child of the child/parent relationship.’10 Once an application has been made, the court may explore options not previously considered, and make a decision as to the child’s best interests, even where parents and clinicians are agreed on a contrary course of action. Thus a proposed sterilisation of a disabled 11-year-old girl was prevented on the ground that: ‘A review of the whole of the evidence leads me to the conclusion that in a case of a child of 11 years of age, where the evidence shows that her mental and physical condition and attainments have already improved, and where her future prospects are as yet unpredictable, where the evidence also shows that she is unable as yet to understand and appreciate the implications of this operation and could not give a valid or informed consent, but the likelihood is that in later years she will be able to make her own choice, where, I believe, the frustration and resentment of realising (as she would one day) what had happened, could be devastating, an operation of this nature is, in my view, contraindicated.’11 The court may therefore act to preserve life even when parents feel that the point has been reached when no more life-saving efforts should be made.12 Conversely, when it is no longer in a child’s best interests that their life be preserved at all costs, the court will authorise doctors either to take no further active treatment steps or even to withdraw treatment which is being provided.13 It can also be in a child’s best interests to cease life-saving treatment even when they are not terminally ill.14 1

A point which the courts routinely reiterate. For example, NHS Trust v MB [2006] EWHC 507 (Fam) at paras 106–107 per Holman J: ‘this is a very fact specific decision taken in the actual circumstances as they are for this child and today … My sole and intense focus has been this child alone’.

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Deciding for Others – Children 4.22 2

Re J (A Minor) (wardship: medical treatment) [1991] Fam 33, [1991] 2 WLR 140, [1990] All ER 930, [1990] Med LR 67, CA. 3 Re T (A Minor) (Wardship: Medical Treatment) [1997] 1 WLR 242, CA. 4 In Cave, Brierley, Archard, Making Decisions for Children-Accommodating Parental Choice in Best Interests Determinations: Barts Health NHS Trust v Raqeeb (2020) 28 Medical Law Review, 1, 183–196, it was argued that MacDonald J had effectively severed the issue of ‘medical best interests’ from an overall evaluation of best interests. However, in Manchester University NHS Foundation Trust v Fixsler [2021] EWHC 1426 (Fam) at para 61, MacDonald J expressly rejected this academic interpretation of his earlier decision and restated that the law requires a holistic evaluation of the child’s best interests. 5 GMC Guidance, Ethical guidance for doctors 0–18 years, see bit.ly/gmc-0to18-guide; GMC Guidance ‘Treatment and care towards the end of life’, see bit.ly/gmc-end-of-life-guide. 6 Portsmouth NHS Trust v Wyatt [2004] EWHC 2247; Re L (A Child) (Medical Treatment: Benefit) [2004] EWHC 2713 (Fam), [2005] 1 FLR 491; An NHS Trust v A [2005] EWCA Civ 1145. 7 NHS Trust v MB [2006] EWHC 507 at para 16. 8 In Re J (see n2 above) at [1991] Fam 33 at 46. 9 Holman J noted the words of Lord Donaldson MR in Re J (see n2 above): ‘There is without doubt a very strong presumption in favour of a course of action which will prolong life, but it is not irrebuttable. Account has to be taken of the pain and suffering and quality of life which the child will experience if life is prolonged. Account has also to be taken of the pain and suffering involved in the proposed treatment … [T]he instinct and desire for survival is very strong. We all believe in and assert the sanctity of human life. Even very severely handicapped people find a quality of life rewarding which to the unhandicapped may seem manifestly intolerable. People have an amazing adaptability. But in the end there will be cases in which the answer must be that it is not in the interests of the child to subject it to treatment which will cause it increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child’s, and mankind’s desire to survive.’ 10 NHS Trust v MB (see n1 above) at para 16 with our enumeration inserted. The approach outlined in MB remains a classic statement of the law. 11 Re D (A Minor) (Wardship: Sterilisation) [1976] Fam 185. 12 Re B (A Minor) (Wardship: Medical Treatment) [1981] 1 WLR 1421, CA (a Down’s syndrome child required a life-saving operation. The parents refused to consent. It was held that because it had not been demonstrated that the child should be condemned to die, the court would make an order that the operation should be performed). 13 Re C (A Minor) [1990] Fam 26, CA (the court approved recommendations designed to ease the suffering rather than prolong the life of a terminally ill hydrocephalic baby); Re J (A Minor) (Wardship: Medical Treatment) [1991] Fam 33, [1991] 2 WLR 140, [1990] 3 All ER 930, [1990] 2 Med LR 67, CA (the curtailment of treatment of a severely brain damaged baby was in the baby’s best interests; an ‘absolutist test’ should not be applied; the sole question was what is in the child’s best interests); Re C (A Minor) (Medical Treatment) [1998] 1 FCR 1, [1998] 1 FLR 384, [1998] Lloyd’s Rep Med 1, [1998] Fam Law 135 (C had a fatal disease. Treatment only prolonged her life and did not alleviate her suffering. The court supported the doctors’ view that it was in C’s best interests for ventilation to be withdrawn and for it not to be restored should C suffer a further relapse). 14 Some of the earlier cases are: Re J (A Minor) (Wardship: Medical Treatment) (see n2 above) (J was a profoundly handicapped baby who suffered intermittent convulsions. J was not terminally ill. Nonetheless the court held that consent to life-saving treatment could be withheld in the child’s best interests). More recent cases are discussed below at paras 4.26–4.30.

The key principles – Fixsler 4.22 The legal framework that the court will apply in cases concerning the provision of medical treatment to children who are not ‘Gillick’ competent was summarised more recently by MacDonald J in Manchester University NHS Foundation Trust v Fixsler:1 ‘(i)

The paramount consideration is the best interests of the child. The role of the court when exercising its jurisdiction is to take over the parents’ duty to give or withhold consent in the best interests of the child. It is the role and duty of the court to do so and to exercise its own independent and objective judgment. 135

4.22  Deciding for Others – Children ‘(ii) ‘(iii)

The starting point is to consider the matter from the assumed point of view of the patient. The court must ask itself what the patient’s attitude to treatment is or would be likely to be. The question for the court is whether, in the best interests of the child patient, a particular decision as to medical treatment should be taken. The term ‘best interests’ is used in its widest sense, to include every kind of consideration capable of bearing on the decision, this will include, but is not limited to, medical, emotional, sensory and instinctive considerations. The test is not a mathematical one, the court must do the best it can to balance all of the conflicting considerations in a particular case with a view to determining where the final balance lies. Within this context the wise words of Hedley J in Portsmouth NHS Trust v Wyatt and Wyatt …[2] should be recalled: “This case evokes some of the fundamental principles that undergird our humanity. They are not to be found in Acts of Parliament or decisions of the courts but in the deep recesses of the common psyche of humanity whether they be attributed to humanity being created in the image of God or whether it be simply a self-defining ethic of a generally acknowledged humanism.”

‘(iv)

In reaching its decision the court is not bound to follow the clinical assessment of the doctors but must form its own view as to the child’s best interests. ‘(v) There is a strong presumption in favour of taking all steps to preserve life because the individual human instinct to survive is strong and must be presumed to be strong in the patient. The presumption however is not irrebuttable. It may be outweighed if the pleasures and the quality of life are sufficiently small and the pain and suffering and other burdens are sufficiently great. ‘(vi) Within this context, the court must consider the nature of the medical treatment in question, what it involves and its prospects of success, including the likely outcome for the patient of that treatment. ‘(vii) There will be cases where it is not in the best interests of the child to subject him or her to treatment that will cause increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child’s and mankind’s desire to survive. ‘(viii) Each case is fact specific and will turn entirely on the facts of the particular case. ‘(ix) The views and opinions of both the doctors and the parents must be considered. The views of the parents may have particular value in circumstances where they know well their own child. However, the court must also be mindful that the views of the parents may, understandably, be coloured by emotion or sentiment. There is no requirement for the court to evaluate the reasonableness of the parents’ case before it embarks upon deciding what is in the child’s best interests. [MB above cited3] … ‘(x) The views of the child must be considered and be given appropriate weight in light of the child’s age and understanding.’ It is also relevant to consider the application of the best interests test in adult cases, especially where the court is dealing with the best interests of an older child.4 In Re A (A Child)5 the Court of Appeal confirmed the relevance to 136

Deciding for Others – Children 4.23 children’s medical treatment decisions of the classic statement of principle of Baroness Hale in Aintree University Hospital NHS Trust v James: ‘Hence the focus is on whether it is in the patient’s best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course they have acted reasonably and without negligence) the clinical team will not be in breach of any duty toward the patient if they withhold or withdraw it.’ and ‘The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude towards the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be.’6 1 Manchester University NHS Foundation Trust v Fixsler [2021] EWHC 1426 at para 57. 2 [2005] 1 FLR 21. 3 See para 4.29 n1. 4 See Chapter 3: Deciding for Others – Adults. 5 [2016] EWCA 759. 6 [2013] UKSC 67 at paras 22 and 39.

The views of the minor 4.23 As set out above, the court must give due weight to the wishes and views of any minor when making a decision as to their best interests. The effect on the child both in terms of their well-being and the efficacy of treatment imposed on an unwilling patient are factors that will be weighed in the determination of best interests. Even where a child is not competent to consent, doctors should always elicit their views and, where possible, agreement or co-operation with the proposed treatment. The child has the right to respect for their wishes under Art 8 of the ECHR. Further, the UNCRC, by Art 12(1), requires that contracting states: ‘shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child’.1 For children over 16 who lack capacity, s 4(6)(a) of the MCA requires the child’s views to be considered as part of the determination of best interests, and the same must be true of any application under the inherent jurisdiction. As to the weight to be given to the child’s views, this will depend on all the circumstances of the case, and the maturity and understanding of the child. Whilst a Gillick competent or capacitous decision can still be overridden by the 137

4.23  Deciding for Others – Children court, a competent choice must weigh heavily in the scales, and may, once all other factors have been considered, be the determinative factor. In Cambridge University Hospitals NHS Foundation Trust v GW,2 Theis J declined to impose a plan for treatment for multiple sclerosis involving restraint on a 17-year-old girl whose increased compliance demonstrated her increasing maturity and understanding. Whilst there was a risk of future non-compliance, it was ‘very low’, and an urgent application could – if necessary – be made. Theis J did not consider the risks justified the imposition of the treatment plan, as: ‘such an outcome would deprive GW of her autonomy in relation to this issue which, when considered in the wider context, would not accord with her best interests.’3 Conversely, a plan for the management of GW’s self-harm wounds involving a very limited element of restraint was authorised (contrary to her wishes) because the risks were higher and the urgency would potentially be more acute.4 There are, perhaps unsurprisingly, more cases where it has been found in the child’s best interests to impose treatment – especially life-saving treatment – despite the child’s competent objection, than where it has not.5 Thus in Re X (No 1) – In re X (A Child)6 Sir James Munby authorised the imposition of a lifesaving blood transfusion on a devout Jehovah’s witness who was accepted to be Gillick competent, saying: ‘I emphasise to X, who, as I am saying this, is watching me and listening over the Teams link, that I have very much in mind and have paid very careful attention to everything she has said. I appreciate in particular that, if this order is made, she will, again, have the same reactions as she described in very powerful and moving language she had on the two previous occasions when she had a transfusion. I do not, in any way, minimise the significance of that to her. I do not in any way minimise the profound significance to her of the fact I am overriding her strongly held religious beliefs. However, it does seem to me, in the light of the evidence I have heard, that were I not to take that course, I would be running a very real risk indeed, and an impermissible risk, of really serious harm to, not merely her future health and welfare but, potentially, even to life itself.’7 Similarly, in E & F (Minors: Blood Transfusion)8 the Court of Appeal dismissed an appeal against two decisions to authorise the administration of blood transfusions contrary to the capacitous decisions of two young people aged 16 and 17. The court identified that the issue before it was not whether the court had the power to make the orders in question, but ‘how it should be exercised.’9 The court considered that in such cases, there were three stages to reaching a decision: ‘[1] The first is to establish the facts. [2] The second is to decide whether it is necessary to intervene. [3] If it is, the final and decisive stage is the welfare assessment.’10 The welfare stage was said to be ‘all-important’,11 there being no presumption in favour of the views expressed even by a mature adolescent.12 Given the factual circumstances, the court declined to interfere with the decisions at first instance. 138

Deciding for Others – Children 4.23 However, there have also been cases where it was found impracticable or unethical to impose the treatment, and so contrary to the child’s best interests to try and impose it.13 In An NHS Trust v DV (a child),14 the competent wishes of a boy aged 17 years and 4 months that he should not receive blood or blood products during the course of surgery for treatment for a lung tumour (supported by his parents, who were also practising Jehovah’s Witnesses, but also – and unusually – by his treating team), were upheld by the court applying the ‘best interests’ test. The court took into account both the psychological damage which previous transfusions had caused DV, the low risks in the case, and the impracticality of any other option, since DV had made it clear he would refuse to undergo surgery without reassurance that no blood transfusion would be given.15 As to how the child’s views and wishes are to be obtained, there is a range of possibilities. A minor who is old enough and has capacity to do so may instruct a solicitor directly, although this is unusual.16 Otherwise, a guardian may be appointed to represent them, or the Official Solicitor in respect of an incapacitous minor of 16–17, and in either case it will be the representative who takes the lead on the child’s participation. The court may also speak directly with a child, whether in hospital or other means, in which case it is important to consider the ‘Guidelines for Judges Meeting Children who are subject to Family Proceedings’ as to the purpose of such an exercise and the appropriate process.17 The use of video platforms in remote hearings during the Covid-19 pandemic has enabled the court to undertake virtual judicial visits to see children in hospital, and also increased the ease with which a child who wishes to do so, can attend and thereby participate directly in the proceedings throughout.18 1 See paras 4.11–4.12 above. 2 [2021] EWHC 2105 (Fam). 3 Ibid, para 115. 4 Ibid, para 116. 5 The seminal ones are Re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11; Re W (A Minor) (Medical Treatment) [1993] Fam 64 and Re X (A Child) (No 2) [2021] EWHC 65 (Fam). See also the helpful list of cases referred to by Sir James Munby in Re X (A Child) (No 2) at para 61, which provides further examples of the where has court determined that it would be in the best interests of a Gillick competent or 16/17-year-old child to have lifesaving treatment, despite the child’s objections. J Fortin, Children’s Rights and the Developing Law (3rd edn, Butterworths, 2009), Ch 5) has commented in support of the Re M approach that: ‘Where an adolescent refuses to undergo life-saving treatment and parental consent is not available, it may be more honest to accept that the patient is Gillick competent, and then to override his or her wishes. This approach does not demean the minor by suggesting that his or her emotional maturity is fundamentally flawed. The court can legitimately argue that society has an interest in protecting under-age minors, irrespective of their legal competence until they attain their majority.’ 6 [2020] EWHC 3003 (Fam), discussed with its sequel Re X (A Child) (No 2) [2021] EWHC 65 (Fam) in depth at para 4.13 above. 7 Ibid, para 15. 8 [2021] EWCA Civ 1888. 9 Ibid, para 5. Two main arguments were advanced: (1) that the State, acting through the court, has no power to overrule the capacitous decision of a mature minor, and in particular a young person aged 16 or 17; permission to appeal on this ground was refused on the basis that ‘it is settled law that the court has the power to intervene in the best interests of a minor even if the effect is to overrule a decision that would be conclusive if the young person had made it after reaching the age of 18’; (2) that the power was wrongly exercised in their cases. 10 Ibid, para 45. Our enumeration. 11 Ibid, para 48.

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4.23  Deciding for Others – Children 12 Ibid, para 63. Note that the court considered it important to describe the decision made as such, rather than as the wishes of the young person, since it was a decision which would be determinative but for the court’s intervention: para 6. 13 Compare Re M (Child: Refusal of Medical Treatment) 1999] 2 FCR 577, [1999] FLR 1097, where Johnson J authorised doctors to carry out a heart transplant on a 15-year-old girl who refused to consent to the operation, having set the risks of the child’s resentment against the imposition of treatment and the risks of the procedure itself against ‘not simply the risk but the certainty of death’, with the Hannah Jones case, in which Hertfordshire PCT discontinued High Court proceedings to remove the 13-year-old from her parents’ custody temporarily to ensure that she underwent a heart transplant over her unequivocal and emphatic refusal to be treated. See S Burns, The right to be kept alive, SJ 153/17, p 11. 14 [2021] EWHC 1037 (Fam). 15 A similar decision was reached by Moor J in Re AGK (unreported, 2019) in respect of a 16-year-old boy: there was an alternative (though not optimal) treatment, and there was again a risk of AGK losing confidence in his treating doctors and not engaging with further treatment if a blood transfusion was imposed upon him. A similar focus on the child’s wishes could take place in other circumstances, for example where doctors are recommending that an adolescent should continue with months or years of regular invasive treatment and/or physical restraint rather than a one-off blood transfusion or major surgery. 16 As did Re X (n5 above). 17 See bit.ly/judges-see-children-Apr-10. Both the Guidelines and case law consistently emphasise that the purpose of a judge meeting with a child is for the benefit of the child and is not a means for the judge to gather evidence which is primarily the role of an experienced Cafcass officer. See, for example, Re KP (A Child) [2014] EWCA 554. 18 As did both X and GW (n2 above).

The views of parents 4.24 As set out above, parents have the power to override their child’s refusal of treatment if the child is under 16 and not Gillick competent to make the decision for themself.1 Parental decisions are, like those of minors, always subject to the overriding power of the court. Where the court is determining the child’s best interests, parental views will be an important factor to weigh in the balance, but will not be conclusive. The child’s interests must always be paramount.2 The weight to be given to the parents’ views will vary according to the circumstances. In Re T (A Minor) (Wardship: Medical Treatment) Waite LJ described a scale: ‘… at one end of which lies the clear case where parental opposition to medical intervention is prompted by scruple or dogma of a kind which is patently irreconcilable with principles of child health and welfare widely accepted by the generality of mankind; and that at the other end lie highly problematic cases where there is genuine scope for a difference of view between parent and judge.’3 Wherever the parents’ view falls on this scale, it is the court’s independent assessment of the child’s best interests that will prevail. However, Waite LJ continued that: ‘… in cases at the latter end of the scale, there must be a likelihood … that the greater the scope for genuine debate … the stronger will be the inclination of the court to be influenced by a reflection that in the last analysis the best interests of every child include an expectation that difficult decisions affecting the length and quality of its life will be taken for it by the parent to whom its care has been entrusted by nature.’4 140

Deciding for Others – Children 4.24 Nonetheless, where a parent’s views place the child’s life in danger or are otherwise detrimental to their best interests, the courts will usually override the refusal. As stated in Prince v Massachusetts: ‘Parents may be free to become martyrs themselves, but it does not follow that they are free in identical circumstances to make martyrs of their children before they have reached the age of full and legal discretion when they can make choices for themselves.’5 The religious views of the parents, although they will be accorded respect, will not outweigh considerations of the child’s overall welfare. In NHS Trust v B6 Moylan J was asked to decide the form of treatment that a very young child should receive and specifically whether B should receive a blood transfusion. B’s parents, Jehovah’s Witnesses, objected to the treatment on the grounds of their faith. Moylan J observed that the court’s ‘paramount consideration’ was B’s welfare and noted although he must give very great respect to the parents’ wishes, they were subordinate to welfare. The powers of the court to consider the child’s best interests are not circumscribed by the type of treatment under consideration. There is, for instance, no legal principle that the court should not order non-essential invasive medical treatment in the face of rooted opposition by the child’s primary carer.7 The courts will even override a parent’s views on an issue upon which there is no general social consensus, and where those views are supported by a significant proportion of the community. The case where the court authorised the separation of conjoined twins against the parents’ opposition, although the operation was bound to result in the death of the weaker twin was such a case.8 Whatever the parental views, ultimately the treatment decision is a judgment for the court. As Sir Thomas Bingham MR put it: ‘… the decision of a devoted and responsible parent should be treated with respect. It should certainly not be disregarded or lightly set aside. But the role of the court is to exercise an independent and objective judgment. If that judgment is in accord with that of the devoted and responsible parent, well and good. If it is not, then it is the duty of the court, after giving due weight to the view of the devoted and responsible parent, to give effect to its own judgment … [O]nce the jurisdiction of the court is invoked its clear duty is to reach and express the best judgment it can.’9 1 See para 4.15 above. 2 The GMC’s guidance on consent involving children states that doctors ‘must consider parents, but their patient must be the doctor’s first concern’ and ‘should always act in the best interests of children and young people’: GMC, 0–18 years: guidance for all doctors (2018), paras 4, 8. Re Charles Gard [2017] EWCA Civ 410 at para 112; Re Alfie Evans, permission to appeal refused by the Supreme Court: see: bit.ly/evans-pta. 3 Re T (A Minor) (Wardship: Medical Treatment) [1997] 1 WLR 242 at 254 per Waite LJ. 4 Fortin, Children’s Rights and the Developing Law (1998, Butterworths), Update 3, Ch 11, contrasts the respect given to the views of the parents in Re T (see n3 above) with the perfunctory dismissal of the parents’ views in Re C (Medical Treatment) [1998] 1 FLR 384 and comments that ‘one is left with the uneasy feeling that the judiciary’s attitude to parents’ strong convictions about their children’s health care is influenced by the way in which parents are perceived, in terms of societal orthodoxy and background’. 5 (1944) 321 US Reports 158: quoted by Ward J in Re E (A Minor) [1993] 1 FLR 386 at 394D, and, as stated by Ward J at 394E, the court ‘should be very slow to allow an infant to martyr himself’. 6 [2014] EWHC 3486 (Fam), citing the decision in Re A (Children) (Conjoined Twins: Surgical Separation) [2001] Fam 147, CA. See paras 4.28, 4.30 below and Chapter 14: Religious Observance and Objections to Treatment.

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4.24  Deciding for Others – Children 7 8 9

Re C (A Child) (Welfare of Child: Immunisation) [2003] EWCA Civ 1148 per Thorpe LJ at para 22; Re H (A Child) (Parental Responsibility: Vaccination) [2020] EWCA Civ 664 (and see para 4.19 above). Re A (Children) (Conjoined Twins: Surgical Separation) [2000] 4 All ER 961, [2000] 3 FCR 577, [2000] 1 FLR 1, [2001] Fam Law 18, CA. Re Z (A Minor) (Identification: Restrictions on Publication) [1997] Fam 1 at 32–33.

Parental rights 4.25 The Art 8 right to a private and family life will be relied upon by parents in order to assert that their views about their child should be respected, regardless of the prevailing medical opinion. ECHR jurisprudence has applied Art 8 in support of parents’ rights to control their children.1 In Glass v UK the mother of a seriously ill child objected to his doctors’ decision to administer diamorphine and to issue a ‘do not resuscitate’ order.2 The relationship between the mother and the medical team had become severely compromised.3 The hospital overrode the wishes of the mother and administered diamorphine without seeking a declaration from the court. The European Court of Human Rights (‘ECtHR’) ruled that the administration of diamorphine against the wishes of the child’s mother violated Art 8 and she was awarded damages. Save for emergency situations, parental consent to treatment should be sought and, where it is not given, authorisation must be obtained from the court. Glass serves as a reminder to doctors of the importance of seeking a court order where parents will not consent to treatment and of the very restricted nature of the exception to this rule in cases of ‘emergency’. However, the right is not absolute: legitimate and proportionate restrictions can be placed on parental rights and parental control when the child’s health or morals are at stake, or when conflicting rights, such as the child’s own right to autonomy, require to be considered. Article 8 protects the moral and bodily integrity of a person from unjustified assault:4 thus, it protects patients’ right to self-determination. Where the parents’ and the child’s interests conflict, it is the child’s interests that must prevail. In Re L, Butler Sloss P considered that the pre-eminence of the child’s rights was wholly compatible with Art 8(2) of the ECHR.5 A similar view was adopted by Thorpe LJ in Payne v Payne: ‘The acknowledgement of child welfare as paramount must be common to most if not all judicial systems within the Council of Europe. It is of course enshrined in Art 3(1) of the United Nations Convention on the Rights of [the] Child 1989. Accordingly the jurisprudence of the European Court of Human Rights inevitably recognises the paramountcy principle, albeit not expressed in the language of our domestic statute.’6 This position is confirmed by decisions of the European Court of Human Rights. In Yousef v Netherlands, the ECtHR stated: ‘in judicial decisions where the rights under Art 8 of parents and those of the child are at stake, the child’s rights must be the paramount consideration. If any balancing of interests is necessary, the interests of the child must prevail …’7 In Charles Gard v UK8 the ECtHR reaffirmed, dismissing the parents’ appeal, that individual states were granted a wide margin of appreciation in their 142

Deciding for Others – Children 4.25 response to sensitive moral and ethical issues, such as whether to offer highly experimental medical treatment. The court noted that its role was merely to examine whether the decision was made ‘in accordance with the law’ and with respect to a legitimate aim under the Convention. The principle that, in cases of conflicting rights, those of the child prevail has also been confirmed by the Supreme Court in the Alfie Evans case: ‘A child, unlike most adults, lacks the capacity to make a decision in relation to future arrangements for him. Where there is an issue in relation to them, the court is there to take the decision for him as it is for an adult who lacks that capacity. ‘The gold standard, by which most of these decisions are reached, is an assessment of his best interests. The first provision in the Children Act is that the child’s welfare shall be the court’s paramount consideration. Parliament’s provision reflects international instruments, particularly the UN Convention on the Rights of the Child. And in the Human Rights Convention, the rights of a child under article 8 will, if inconsistent with the rights of his parents, prevail over them.’9 The child’s right to autonomy is a relevant consideration which may outweigh the Art 8 rights of parents even to be informed about the treatment in question. Thus, the confidentiality in a doctor’s advice to a Gillick competent girl about abortion and reproductive health must be respected: the girl’s Art 8 rights outweigh those of her parents.10 In practice, the Strasbourg approach mirrors that of the UK: the ultimate test is what is in the best interests of the child. While a parent’s Art 8 rights must be respected and placed in the balance when the courts take decisions concerning a child, the overriding interest is that of the child.11 1 2 3 4

For example, Nielsen v Denmark (1988) 11 EHRR 175. Glass v UK [2004] 1 FLR 1019. The child’s mother resuscitated him herself and resorted to violence against his doctors. See also X and Y v Netherlands (1985) 8 EHRR 235 and Peters v Netherlands 77A DR 75 (1994). 5 Re L [2000] EWCA Civ 194. See also Re C (A Child) (HIV testing) [2000] 2 WLR 270 at 280. 6 Payne v Payne [2001] EWCA Civ 166 at para 38. 7 Yousef v Netherlands (Application No 33711/96), (2002) 36 EHRR 345. See also Johansen v Norway (1996) 23 EHRR 33 at para 64; Hendricks v Netherlands (1982) 5 EHRR 223 it was held that where there was a serious conflict between the interests of a child and one of their parents which could only be resolved to the disadvantage of one of them, it was the child’s interests that had to prevail under Art 8(2). 8 Application No 39793/17. See para 4.26 below. 9 Re Alfie Evans, permission to appeal refused by the Supreme Court: see bit.ly/evans-pta at para 13–14. 10 R (on the application of Axon) v Secretary of State for Health and Family Planning Association [2006] EWCA 37 (Admin), [2006] All ER (D) 148 (Admin). 11 See also Art 3(1) of the UNCRC which states: ‘In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.’ The application of Art 3 of the UNCRC to domestic law has been further considered by the Supreme Court in a number of cases, including ZH (Tanzania) v SSHD [2011] UKSC 4 at paras 25–26 and R (SG) v Secretary of State for Work and Pensions [2016] 1 WLR 1449 at paras 106–108. In relation to Art 8(2) of the ECHR see, for example, Hoffman v Austria (1993) 17 EHRR 293; Bronda v Italy [1998] EHRLR 756; and in Garcia v Switzerland, Application No 10148/82 (DR 42, p 98) the Commission stated: ‘having regard to Article 8 para 2, when as in the instant case there is a serious conflict between the interests of the child and those of one of his parents which can only be resolved to the detriment of one of these parties the interests of the child must prevail’.

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4.26  Deciding for Others – Children

Legal challenges to the best interests test: Charlie Gard and Alfie Evans 4.26 The principle that the child’s best interests must prevail has been upheld following sustained consideration in a succession of high profile and heavily litigated decisions.1 In the majority of these cases, the court has come down on the side of the treating clinicians, with the notable exception of the case of Tafida Raqeeb. The court’s refusal of the Trust’s application in Raqeeb turned on the specific facts of the case which we consider in detail below.2 The decisions have proved controversial, sparking much debate not only on social and national media, but also in academic journals.3 The outcome in every single case, however, has confirmed the primacy of the holistic best interests test as the ‘gold standard’ to be followed. One of the most controversial at the time, Re Charles Gard,4 concerned an application by the hospital to withdraw artificial ventilation for an 8-month-old infant, Charlie Gard, who was suffering from a debilitating genetic mutation and who had already suffered irreversible brain damage. The application was opposed by the parents who wished to take the child to the United States for experimental nucleoside therapy. The court rejected the parents’ proposal and granted the declarations sought, applying the best interests test. In upholding this decision, the Court of Appeal rejected an attempt to draw a distinction between parents simply refusing to consent (referred to as ‘Category 1’ cases) and cases where the parents had proposed a viable alternative form of treatment (‘Category 2’ cases). It was argued that in Category 1 cases, the best interests of the child applies and in Category 2 cases, the correct legal test is that the parents’ preferred option should only be overruled if it can be demonstrated that this option is likely to cause the child to suffer significant harm, by analogy with the requirement of meeting the ‘threshold test’ in s 31(2) of the Children Act 1989 as a pre-requisite for the removal of a child from their parents into the care of the state. Following a comprehensive analysis of the case law, the Court of Appeal concluded that no such distinction could be made and that in all cases: ‘… the sole principle is that the best interests must prevail and that must apply even to cases where parents, for the best of motives hold on to some alternative view.’5 Leave to appeal was refused by the Supreme Court.6 The Supreme Court, agreeing with the Court of Appeal, considered decisions about the medical treatment of children are governed by their best interests, which was referred to as ‘the gold standard’. In Re Alfie Evans, even more extensive legal arguments were deployed to challenge the test of best interests. Alfie, who was 21 months old at the time of the first judgment,7 also suffered from devastating progressive degeneration of his brain, although no diagnosis could be identified. His parents resisted an application to withdraw continued ventilatory support, hoping to take him to Italy to the Bambino Gesu hospital in Rome for continued life sustaining treatment. In a series of urgent applications and appeals, they developed the argument in Gard that there should be an additional threshold test of ‘significant harm’ in these kinds of medical treatment cases, and contended that the best interests test was inconsistent with their Art 14 ECHR rights, claiming that it discriminated 144

Deciding for Others – Children 4.27 against them in so far as their Art 8 rights were concerned. This argument was rejected by Hayden J and the Court of Appeal, permission to appeal being refused by the Supreme Court. They also brought an application for habeas corpus, which was refused by Hayden J and the Court of Appeal. Further applications were made when Alfie was made an Italian citizen, shortly before ventilation was withdrawn; and again after treatment was withdrawn, when he continued to breathe unaided. All were unsuccessful. Both Gard and Evans provoked significant public and academic debate as to whether the best interests test is the one which should be applied where the decision at issue is whether or not to continue life sustaining treatment for a very young child. Both a Charlie’s Law and an Alfie’s Law have been proposed to prioritise the rights of parents.8 1

Ashya King – In the matter of Ashya King [2014] EWHC 2964; Charlie Gard – In the matter of Charles Gard [2017] EWCA Civ 410; Isaiah Haastrup – King’s College NHS Trust v Thomas & Haastrup [2018] EWHC 127; Alfie Evans – Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308; Tafida Raqeeb – Tafida Raqeeb v Barts NHS Foundation Trust [2019] EWHC 2531 (Admin) and [2019] EWHC 2530 (Fam); Pippa Knight – Parfitt v Guy’s and St Thomas’ Children’s NHS Foundation Trust [2021] EWCA Civ 362; Alta Fixsler – Fixsler v Manchester University NHS Foundation Trust [2021] EWCA Civ 1018. 2 See para 4.30 below. 3 See for example the collection of essays in Parental Rights, Best Interests and Significant Harms: Medical Decision-Making on behalf of Children Post-Great Ormond Street Hospital v Gard edited by Goold, Herring and Aukland (2019, Hart Publishing), which critically explores from a variety of different disciplines whether the current best interests threshold should now be replaced with a ‘risk of significant harm’ approach. 4 Re Charles Gard [2017] EWCA Civ 410. Leave to appeal to the Supreme Court was refused (see Re Charlie Gard (8 June 2017) in which the Supreme Court, agreeing with the Court of Appeal, considered decisions about the medical treatment of children are governed by their best interests, which was referred to as ‘the gold standard’), and the parents’ subsequent claim before the ECtHR (see Gard v UK (Application No 39793/17), [2017] 2 FLR 773, outlined at para 280) was unsuccessful but the court did not consider it necessary to consider the validity of the argument as to the proper test to be applied when considering the parents’ alternative proposed treatment (see paras 114–119). 5 Ibid, per McFarlane P at para 112. 6 Re Charlie Gard (8 June 2017). 7 Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam). The case is subsequently reported at [2018] EWCA Civ 550, [2018] EWHC 818, [2018] EWCA Civ 805, [2018] EWHC 953 (Fam), and [2018] EWCA 984 (Civ). The Supreme Court’s decision in refusing permission to appeal on 20 March 2018 is at: bit.ly/evans-pta. 8 See Benbow, An Analysis of Charlie’s Law and Alfie’s Law, (2020) 28 Medical Law Review 2 at bit.ly/Benbow-MLR-2020; and see further https://thecharliegardfoundation.org/ charlies-law/; bit.ly/Guardian-12-May-18. An amendment was tabled to the Health and Care Bill – https://bills.parliament.uk/publications/44746/documents/1265 – which would have applied in cases of a dispute between a parent of a child with a life-limiting illness and the child’s doctors. As well as confirming the rights of parents to have their views considered, it would require hospital trusts to provide a mediation process, and if the case goes to court, ensure that legal aid was available to the parents. Critically, it would exclude from the options before the court: ‘any order that would prevent or obstruct the parent from pursuing proposals for obtaining disease-modifying treatment for the child (whether in the UK or elsewhere) unless the court is satisfied that the proposals ‘(i) involve a medical institution that is not generally regarded within the medical community as a responsible and reliable institution’, or ‘(ii) pose a disproportionate risk of significant harm to the child.’ See the report in the Daily Telegraph on 7 January 2022 at bit.ly/Telegraph-7-Jan-22. The amendment was withdrawn on 9 February 2022: see bit.ly/HCB-Amt-287.

Pippa Knight 4.27 Pippa Knight was a five-year-old child who suffered severe brain damage after developing acute necrotising encephalopathy at the age of 20 145

4.27  Deciding for Others – Children months. By the time of the hearing, she had slipped into a persistent vegetative state and was almost certainly unable either to feel either pain or to experience pleasure. The central issue was whether the court should authorise a trial of portable ventilation, with a view to Pippa returning home for what was likely to be a short period of time before her inevitable death. In considering that issue, Poole J said it was necessary to consider the end goal of the trial, namely long-term ventilation with continued life-sustaining treatment at home and to consider what that process would entail for Pippa.1 As homecare could never replicate the exceptional standards in a paediatric intensive care unit, transfer home would if anything be a detriment, with no non-medical benefit to her welfare achieved as a result. As Pippa had no conscious awareness of her environment or interactions with others, there would be no benefit to her from being in a home bedroom.2 He also found the prospects of success to be remote.3 Considering the views of the family, and what might be presumed to be those of Pippa herself, Poole J said: ‘I take into account the wishes of Pippa’s mother to care for her at home, that Pippa would have been likely to have wanted to be at home rather than in hospital, and that there might be some benefits to Pippa’s family from home care as opposed to hospital care, but Pippa would not be aware that her family were benefiting, their welfare is not the focus of the court’s consideration, and although Pippa may well have wanted to be cared for at home, she would not be aware that she was at home.’4 Poole J rejected the contention that no physical harm could be caused to Pippa by continued imposition of medical treatment, given her inability to feel pain and no conscious awareness. He also referred back to MacDonald J’s detailed judgment in Raqeeb and said that in reaching his decision as to Pippa’s best interests, he had found arguments based around the concept of dignity to be unhelpful.5 The Court of Appeal upheld the judge’s decision and declined an invitation by counsel instructed by Cafcass to enter into any detailed analysis of how Pippa’s ‘dignity’ should be assessed.6 1 2 3 4 5 6

Guy’s and St Thomas’ Children’s NHS Foundation Trust v Knight [2021] EWHC 25 (Fam) at para 17. Ibid, paras 102–104. Ibid, para 54. Ibid, para 106(d). Ibid, paras 76 and 86. See further paras 4.38–4.39 below. Parfitt v Guy’s and St Thomas’ Children’s NHS Foundation Trust [2021] EWCA Civ 362.

Alta Fixsler 4.28 Alta Fixsler was a two-and-a-half-year-old girl who suffered catastrophic brain injuries at birth. Her parents, who are devout Hasidic Jews, proposed she be transported to Israel for continuing treatment in hospital and, eventually, burial in accordance with their religious beliefs. The Trust made an application for orders authorising the withdrawal of life-sustaining treatment, contending that to follow the parents’ proposal would be of no benefit to Alta and would cause her further pain. At first instance,1 MacDonald J took into account the religious, cultural and ethical context of the case, which was unusually powerful: Alta was an Israeli 146

Deciding for Others – Children 4.28 citizen, the family intended to emigrate to Israel, and they shared devout Orthodox Jewish beliefs. However, he rejected the submission that the best interests decision-making process ‘must be framed within the Jewish belief system in this case’, saying that rather, ‘the Jewish belief system followed by the parents is one factor to be weighed in the balance by the court when reaching a best interest decision.’2 MacDonald J also rejected the submission that there should be an assumption that Alta would share the values of her parents, family and community, given that her brain injury ‘left her with no ability to learn about the world around her before she could understand anything of the religion and culture into which she was born’.3 After extensive evidence, MacDonald J held that Alta’s experience of pain represented a ‘significant burden to her’, even though, given the catastrophic nature of her brain damage, there was no way of knowing ‘the exact nature of her experience of pain’.4 The judge was also critical about the proposal to transfer Alta to Israel, which was ‘significantly hampered by a paucity of detailed information’, suggesting that the typically wide leeway afforded to parents in cases of this nature is not unlimited.5 He was, however, satisfied that even if a more detailed proposal had been available, he would have reached the same decision. MacDonald J went on to reject the parents’ proposal that Alta should be transferred to Israel simply for withdrawal of treatment and burial, on the basis that this would still expose her to further pain and discomfort, which outweighed the factors that transfer would allow her to spend her last days with her family, and be buried in accordance with their religious beliefs.6 The Court of Appeal7 upheld MacDonald J’s decision. In the leading judgment, Baker LJ considered the different tests for making decisions for other people: ‘One is the best interests test, under which (in its simplest form) a decisionmaker decides what is best for the person concerned. The second is the so-called “substituted judgment” test, by which the decision-maker tries to put himself in the position of the person lacking capacity and make the decision in the way he or she would have decided. Under the law of England and Wales, the test to be applied in cases about medical treatment of both children and mentally incapacitated adults is called the best interests test but in each case contains an element of substituted judgment.’8 This is a helpful summary of the reasoning underpinning the correct approach: the court must look at the question from the assumed point of view of the patient, but the fundamental test remains the best interests of the child. A similar approach applies to the best interest decision making process for adults set out in Aintree University Hospitals NHS Foundation Trust v James.9 Baker LJ agreed with the approach adopted by MacDonald J.10 The wishes and feelings of the child, where ascertainable, would always be taken into account. Similarly, the court would take the religion and culture into which the child was born, and the likelihood of the child following the practices and tenets of that religion, into account in and appropriate case: ‘But neither the ascertainable wishes and feelings of the child nor the child’s background and characteristics carry any presumption of precedence over any of other the other factors in the welfare checklist. The weight to 147

4.28  Deciding for Others – Children be attached to the child’s wishes and feelings, and to her background and characteristics, will depend on the particular circumstances of each case.’11 1 2 3 4 5

Manchester University NHS Foundation Trust v Fixsler [2021] EWHC 1426 (Fam). Ibid, para 72. Ibid, para 95. Ibid, para 91. Ibid, para 101. And note that the Court of Appeal went on to refuse to admit late evidence which the parents sought to adduce; cf the decision of Hayden J to refuse a last-minute request for adjournment by the parents of Alfie Evans: Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam) at paras 32–36. 6 Manchester University NHS Foundation Trust v Fixsler (n1 above) at paras 110–114. 7 Fixsler v Manchester University NHS Foundation Trust [2021] EWCA Civ 1018. 8 Ibid, para 12. 9 [2013] UKSC 67. See Chapter 3: Deciding for Others – Adults. 10 Fixsler v Manchester University NHS Foundation Trust [2021] EWCA Civ 1018 at paras 26–29. 11 Ibid, para 29. See further Chapter 14: Religious Observance and Objections to Treatment at paras 14.24–14.29.

Cases where parental views have prevailed 4.29 There are practical limits to the power of the court. Even where the court disagrees with the parental views, in weighing the child’s best interests the court may have to accept them where treatment cannot be accomplished successfully without the parents’ co-operation – and they are either unwilling or unable to give it – orders will not be made which cannot be enforced. In Re T,1 three doctors had concluded that it was in the best interests of a very young child, T, who had been lawfully taken out of the jurisdiction by his mother, to undergo a liver transplant. Without surgery, T would die within 12 to 18 months. Although the surgery was major and complicated, it offered T a good chance of living a normal life for many years. T’s mother objected to the treatment. Connell J at first instance gave consent for the treatment to be performed. The Court of Appeal overturned that decision, holding that the first-instance judge had failed to take sufficient account of T’s mother’s views. Permitting the treatment would have the effect of coercing T’s mother into playing the ‘crucial and irreplaceable’ role in the aftermath of major surgery which would be essential to the success or otherwise of the treatment. The reasonableness of the mother was not the primary issue (although the Court of Appeal doubted Connell J’s conclusion that she was unreasonable): what mattered in this case was the dependence of the child on the mother: ‘This mother and this child are one for the purpose of this unusual case and the decision of the court to consent to the operation jointly affects the mother and son … The welfare of this child depends upon his mother. The practical considerations of her ability to cope with supporting the child in the face of her belief that this course is not right for him, the requirement to return probably for a long period to this country, either to leave the father behind and lose his support or to require him to give up his present job and seek one in England were not put by the judge [at first instance] into the balance when he made his decision. ‘… I would stress that … the court is not concerned with the reasonableness of the mother’s refusal to consent but with the consequences of that refusal and whether it is in the best interests of C for this court in effect to direct the mother to take on this total commitment where she does not agree with the 148

Deciding for Others – Children 4.30 course proposed … forcing the devoted mother of this young baby to the consequences of this major invasive surgery.’2 The court concluded that it was not in the best interests of the child to require him to return to England for the purpose of undergoing liver transplantation and that his future treatment should be left in the hands of his parents. Re T has come under sustained academic3 and judicial criticism. In Re C Thorpe LJ left no room for doubt that Re T should be confined to its facts: ‘… the outcome of that appeal, denying a child life-prolonging surgery, is unique in our jurisprudence and is explained by the trial judge’s erroneous focus on the reasonableness of the mother’s rejection of medical opinion thus excluding other factors including the risks and consequences of the surgery, the mother’s crucial role in the aftermath of surgery and the practical consideration that the judge’s order would have required both parents, alternatively the mother alone, to return to this jurisdiction from a distant commonwealth country probably for the long period that the surgery and its aftermath would require.’4 However, In Ashya King (A Child),5 the court extended a significant degree of leeway to parental views in determining the child’s best interests. The parents sought permission to take their child to Prague to undergo proton therapy for a brain tumour, a form of treatment that was then unavailable in the UK. The NHS Trust was not prepared to recommend or fund travel abroad for proton therapy. The parents subsequently removed their child from hospital without permission and travelled to Spain. The local authority raised safeguarding concerns and, dramatically, arrest warrants were issued for the parents and the child was made a ward of court, requiring him to be presented immediately to the nearest hospital in Spain. Agreement was subsequently reached between the medical teams in the UK, Spain and Czech Republic on a treatment plan for proton therapy. Baker J authorised the proposal on the grounds that proton therapy was a reasonable course of treatment that was compatible with the child’s best interests. This case demonstrates that if the parents’ position is reasonable and not contrary to the child’s interests, the court is unlikely to override the parents’ wishes. Indeed, in that case Baker J went so far as to say that in such circumstances ‘it is no business of this court, or any other public authority, to interfere with their decision’.6 1 Re T (A Minor) (Wardship: Medical Treatment) [1997] 1 WLR 242 per Butler-Sloss LJ. 2 Ibid, 253B. 3 Freeman describes the decision as ‘the nadir of judicial thinking in this area’: M Freeman, Whose Life Is It Anyway? (2001) 9 Medical Law Review 529; Brazier questions whether it is an ‘aberration’: M Brazier and E Cave, Medicine, Patients and the Law (4th edn, Penguin, 2007) at p 388. 4 Re C (Welfare of Child: Immunisation) [2003] 2 FLR 1095. 5 Re Ashya King [2014] EWHC 2964 (Fam). 6 Ibid, para 34.

Tafida Raqeeb 4.30 The case of Tafida Raqeeb v Barts NHS Foundation Trust1 concerned two sets of proceedings, a claim in the Family Division and an application for judicial review, in relation to whether the continuation of life-sustaining medical treatment was in the best interests of Tafida Raqeeb, a five-year-old 149

4.30  Deciding for Others – Children girl who had been left with extensive and irreversible damage to her brain as a result of a non-traumatic brain injury. Tafida’s treating doctors were clear in their opinion that further life-sustaining treatment was not in her best interests. Her parents looked for alternative hospitals and requested that Tafida be transferred to a hospital in Italy, who had agreed that they would be able to offer her palliative care. The treating hospital in London indicated that they would not agree to the transfer on the basis that it would not be in Tafida’s best interests. The parents made an application for judicial review against the Trust, submitting that through the refusal of the hospital to allow the transfer, Tafida was being disproportionately denied her right under Art 56 of the Treaty for the Functioning of the European Union.2 The Trust made an application to the court under s 8 of the Children Act 1989 to determine whether the transfer would be in Tafida’s best interests. The decision was described by Mr Justice MacDonald as a ‘grave, multifaceted and complex one’. In respect of the application for judicial review, the court found the Trust had acted unlawfully in not taking into consideration Tafida’s right to the provision and receipt of services in an alternative hospital, including palliative and end of life care as enshrined by Art 56 of the Treaty on the Functioning of the European Union. The court decided not to grant relief on the basis that it would serve no practical purpose given the pending application before the court regarding Tafida’s best interests. The judgment provides guidance (no longer applicable post-Brexit) on dealing with a request by parents of an EU citizen child for transfer for medical treatment in another Member State. It is possible that similar arguments may be adopted in cases where a child has dual citizenship or there are funds to afford private treatment overseas and, as a consequence, may have access to medical treatment in another hospital in a different jurisdiction. However, the Trust’s application for a specific issue order and relief under the inherent jurisdiction was also dismissed by the court, with the effect that life sustaining treatment should continue and the transfer to the Italian hospital could take place. On balancing the circumstances of the case, MacDonald J found Tafida to be medically stable. He accepted there were substantial factors supporting the argument that a transfer would not be in Tafida’s best interests but ultimately considered the compelling factors on the opposing side to outweigh the former. Central to the decision were the factors that: (a) (b) (c)

(d)

Tafida did not demonstrate a capacity to feel pain; the burden of further treatment was low; the Italian hospital that had agreed to provide treatment had a ‘detailed, fully thought out and funded care plan that will look to move Tafida to a position where she can, following a tracheostomy and a gastroscopy, be cared for by her family at home on a ventilator’; (this differentiated Tafida’s case from both Gard and Evans); there was agreement amongst all the experts, including the treating team, that Tafida could be ventilated at home. (This situation may be contrasted with Knight, where the applicant’s evidence was clear that no child with Pippa’s level of disability had been ventilated in the community setting contended for by her mother.3) 150

Deciding for Others – Children 4.31 The judgment is also worth noting for its consideration of the Art 9 ECHR rights of Tafida and the parents in relation to freedom of thought, conscience and religion. MacDonald J said: ‘whilst not determinative, the Art 9 rights of the parents and of Tafida to freedom of thought, conscience and religion fall for consideration in this case and in my judgment must be accorded weight in the balancing exercise in circumstances where the parents’ beliefs, which beliefs would have influenced Tafida, included the belief that to withdraw life sustaining treatment from Tafida would be a sin in circumstances where they believe that where the breath of life subsists so too the soul.’4 Permission was therefore granted for her parents to take her to be cared for in Italy. The case of Raqeeb demonstrates that, where there is a carefully thought-out plan for treatment supported by a responsible body of medical professionals that will not expose the child to any or any significant risk of harm, the court will be reluctant to allow withdrawal of treatment.5 The case provides a powerful reminder of the importance of considering very carefully the specific circumstances and medical evidence in each case when advising in serious medical treatment cases. 1

Tafida Raqeeb v Barts NHS Foundation Trust [2019] EWHC 2531 (Admin) and [2019] EWHC 2530 (Fam). 2 Art 56: ‘… restrictions on freedom to provide services within the Union shall be prohibited in respect of nationals of Member States who are established in a Member State other than that of the person for whom the services are intended. 3 Guy’s and St Thomas’ Children’s NHS Foundation Trust v Knight [2021] EWHC 25 (Fam) (discussed above at para 4.27) at para 52. 4 Tafida Raqeeb v Barts NHS Foundation Trust [2019] EWHC 2531 (Admin) and [2019] EWHC 2530 (Fam) at para 184. See Chapter 14: Religious Observance and Objections to Treatment at para 14.23. 5 See Bridgeman, The Provision of Healthcare to Young and Dependent Children: The Principles, Concepts and Utility of the Children Act 1989 (2017) 25 Medical Law Review, 363, 375.

Participation of parents 4.31 Irrespective of issues of capacity to litigate, natural parents should and will be afforded the opportunity to be involved in the process insofar as it is reasonably practicable and the wishes of the parents will be taken fully into account by the court, as demonstrated by the following two cases. In Re KH (Medical Treatment: Advanced Care Plan)1 the applicant NHS Trust sought declarations in respect of the best interests of a three-year-old and sought approval of an advanced care plan which involved not giving aggressive treatment in the event that he were to deteriorate seriously. The child had suffered severe brain damage at the age of five weeks and his condition had undergone a progressive deterioration. He lived with long-term foster carers but his parents took an interest in his welfare and had supervised contact. His parents lacked capacity to make decisions about the medical treatment (and to conduct proceedings). Importantly, Peter Jackson J observed that, on assessment of best interests, an involved and capacitous parent may be better placed to express views that assist in assessing best interests than one who is less involved or capacitous: nevertheless that would be a matter of 151

4.31  Deciding for Others – Children evidence and not one of principle. His Lordship noted that parents who lack capacity may still make telling points about welfare and it would be wrong to discount the weight to be attached to their views simply because of incapacity. Ultimately, it is the validity of the views that matter, not the capacity of the person that holds them.2 In Re Jake (A Child),3 the parents of a severely ill child had learning difficulties and an interim care order was in place. Sir James Munby, President of the Family Division, emphasised that, whilst the parents had their own difficulties, this was absolutely no reason why their views, wishes and feelings should not be taken into account fully by everybody involved in the process, whether they be treating clinicians or lawyers.4 An issue which has increasingly troubled courts dealing with cases concerning the medical treatment of children, especially where the application is for withdrawal of life sustaining treatment, is the absence of public funding.5 Non-means tested public funding is not currently available for parents in such circumstances (as it is, for instance, in childcare proceedings). There are experienced practitioners who will take on such cases pro bono. Parents may wish to approach Advocate for further assistance.6 1 2 3 4 5

[2013] 1 FLR 1471. Ibid, para 16. [2015] EWHC 2442 (Fam). At para 45. See for example A Local Authority v A Mother [2021] EWFC B65; NHS Trust v Parents & S [2021] EWHC 594 (Fam); Great Ormond Street Hospital for Children NHS Foundation Trust v MBC [2021] EWHC 2574 (Fam). 6 https://weareadvocate.org.uk.

F  FURTHER CONSIDERATIONS Treatment of very young children 4.32 There is now a substantial body of reported case law about decisions regarding life-sustaining treatment for young children. Recent cases such as the Charlie Gard case1 have generated significant interest in a national and sometimes international context. The cases are highly fact-specific and depend ultimately on the circumstances of the particular child involved. The legal test remains the same, namely an assessment of the child’s best interests. 1

Re Charles Gard [2017] EWCA Civ 410; permission to appeal refused by the Supreme Court: see bit.ly/evans-pta.

Deliberate killing – the conjoined twins case 4.33 At the interface between the law of abortion and the law relating to the treatment of severely disabled new-borns there is a paradox. A termination of pregnancy may be performed up to term for reason of serious foetal abnormality.1 It is trite law that the unborn foetus has no rights.2 Yet, once the baby is born, deliberately ending its life, for reason of disability or otherwise, will constitute murder. The doctrine of necessity provides a possible exception to the rule against deliberate killing. It has been invoked only once in a medical treatment 152

Deciding for Others – Children 4.33 decision case and is likely only to apply in the case of conjoined siblings who are unable to achieve independent existence. Re A3 concerned conjoined twins, the weaker of whom, (Mary), was effectively parasitic on the stronger (Jodie) for circulation of oxygenated blood. Without separation, both twins would inevitably die due to the strain on Jodie’s organs. If the twins were separated, Jodie would have a good chance of a relatively normal life. Mary, however, would die immediately after the separation. At first instance, Johnson J determined that the reasoning in Bland4 applied and therefore the separation would be lawful. In Bland it was held that it was lawful to discontinue artificial means of keeping a PVS patient alive. Johnson J held that this reasoning applied because doctors proposed not a positive act but ‘merely the withdrawal of Mary’s blood supply’, in the same way that doctors were permitted to withdraw Anthony Bland’s artificial nutrition and hydration. The Court of Appeal unanimously rejected this line of reasoning. Unlike Bland, where life sustaining treatment could be discontinued, this did not apply in Re A, because Mary was not receiving treatment. Saving Jodie’s life involved a positive act – an invasive operation in which Mary would be separated from Jodie with the inevitable conclusion that Mary would die. Johnson J’s second ground for holding that the separation would be lawful, namely that it was in both Mary’s and Jodie’s best interests, was also rejected by a majority of the Court of Appeal. Stripped of the protection of the Bland omissions’ doctrine, Johnson J’s opinion that Mary’s short life would be painful and to her disadvantage can be seen as a stark endorsement of active euthanasia based on quality-of-life principles. For Brooke LJ (with whom Ward LJ concurred): ‘… by no stretch of the imagination could it be said that the surgeons would be acting in good faith in Mary’s best interests when they prepared an operation which would benefit Jodie but kill Mary.’5 Regardless of the supposedly poor quality of Mary’s life, the Court of Appeal was constrained by the law of homicide and the unlawfulness of active euthanasia. The court therefore had to establish whether the act of undertaking the operation would amount to intentional killing under the law of homicide and whether that act of killing would be unlawful. Ward and Brooke LJJ concluded that in performing the separation, the surgeons did intend to kill Mary. They searched for a legal means to convert the separation into a lawful act. Ward LJ rejected labelling Mary with the American terminology which would paint her to be ‘an unjust aggressor’, but nevertheless adopted the principles underlying that test to determine that the doctors could avail themselves of a plea of ‘quasi-self-defence, modified to meet the quite exceptional circumstances nature has inflicted on the twins’ in: ‘… coming to Jodie’s defence and removing the threat of fatal harm to her presented by Mary’s draining her lifeblood.’6 Brooke LJ relied upon the defence of necessity. He felt able to distinguish the conjoined twins’ case from the seminal case of Dudley and Stephens where it was held that the defence of necessity was not available to shipwrecked sailors who killed and ate a cabin boy to avoid starvation.7 What distinguished Mary from the cabin boy was that she was ‘self-designated for a very early death’ in any event.8 This distinction is tenuous. Despite Ward LJ’s statement that ‘this is a court of law, not of morals’,9 the decision was not based on settled 153

4.33  Deciding for Others – Children legal principles (less still principles upon which their Lordships agreed). Their judgment was arguably founded on moral relativism, balancing the relative worth of two existences: an exercise that Lord Coleridge was unable to countenance in Dudley and Stephens.10 The result might have been different had there been evidence that both twins could survive longer than the ‘near future’. The twins’ parents did not wish to pursue an appeal to the House of Lords (despite a fully constituted Judicial Committee making itself available to hear such an appeal). We are therefore left with the opaque and unsatisfactory decision of the Court of Appeal.11 The heart-wrenching nature of the no-win decision to be made in this case leads us to ask whether these vanishingly rare circumstances should not form an exception to the rule that the court can trump a parental determination. Should the Art 8 right to respect for family life and/or the Art 9 right to respect for religious beliefs not mean that exceptionally here the parents should have had the ultimate decision as to whether Mary should be killed to save Jodie’s life? Finally, Smith suggests that the limited ratio of Re A, regardless of the legal route by which it was achieved, was as follows: ‘Where A is, as the defendant knows, doomed to die in the near future but even the short continuation of his life will inevitably kill B as well, it is lawful to kill A, however free of fault he may be.’12 We would agree. The specific and rare factual matrix in Re A means that the potential for the application of the doctrine of necessity will arise very infrequently.13 It seems unlikely that procedures at the expense of one child for the benefit of another will often be permitted. Indeed, it is an established principle that organ and tissue donation for the benefit of a sibling will not be permitted unless it can be demonstrated that it is in the interests of the donor child – reasoning which will invariably require the survival of both siblings.14 Doctors faced with a situation such as that in Re A must seek the approval of the court before proceeding with a separation.15 Abortion Act 1967, s 1(1)(d); see Chapter 9: Abortion, para 9.17. Paton v British Pregnancy Advisory Service Trustees [1979] 1 QB 276; Paton v UK (1980) 3 EHRR 408; C v S [1987] 1 All ER 1230; Re MB (An Adult: Medical Treatment) [1997] 2 FLR 426, [1997] 8 Med LR 217; and St George’s Healthcare NHS Trust v S [1998] 3 WLR 936. See Chapter 12: Pregnancy and Childbirth: paras 12.2 and 12.11. 3 Re A (Children) (Conjoined Twins: Surgical Separation) [2001] Fam 147. [2000] 4 All ER 961, [2000] 3 FCR 577, [2000] 1 FLR 1, [2001] Fam Law 18, CA. 4 Airedale NHS Trust v Bland [1993] AC 789, [1993] 2 WLR 316, [1993] 1 FLR 1026, HL (hereafter simply ‘Bland’)’; see Chapter 15: Withdrawal and Withholding Treatment. 5 See Re A (Children) (Conjoined Twins: Surgical Separation) (n3 above) [2001] Fam 147 at 218A. 6 Ibid, 203D–204C. 7 R v Dudley and Stephens (1884–85) LR 14 QBD. 8 See Re A (Children) (Conjoined Twins: Surgical Separation) (n3 above) at 239C–240E. 9 Ibid, 155D. 10 Ibid, 287–288. 11 Hewson cites an ITN News interview in which Ward LJ recognised that ‘fifty percent of the population will agree with the decision-fifty per cent will think we have gone potty’ (Hewson, Killing Off Mary: Was The Court of Appeal Right? (2001) Med Law Rev (9)281 at n 2). 12 J C Smith, Case Comment [2001] Crim LR 400 at 405. 1 2

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Deciding for Others – Children 4.34 13 More recently the reasoning adopted by the court in Re A was relied upon in support of voluntary euthanasia; however, this argument was rejected by the High Court: see R (Nicklinson) v Ministry of Justice [2012] EWHC 2381 (Admin). It was argued by the applicant that Re A demonstrated that the court is able to fashion a means of permitting doctors to act in a way which accords with the demands of humanity. Reference was made to Bland and the fact that Lord Goff referred to the ‘Rubicon’ which runs between on the one hand the care of a living patient and the other hand euthanasia. The applicant contended that in Re A the Rubicon had in fact been crossed. The High Court however took the view that Re A was highly unusual and laid emphasis on the fact that a particular feature of Re A was the duty to protect Jodie’s life and the recognition that this imperilled the parasitic life of Mary. It was held that none of the unusual features of Re A were present in Tony Nicklinson’s case. There was no defence available to any doctor who administered a lethal drug that there was a lack of intent/lack of causation/quasi self-defence. The applicant tried to push the arguments in Re A further by contending that the case supports the fact that the court will be willing to apply the doctrine of necessity in a new situation and was prepared to consider the lesser of two evils. The High Court considered that it was for Parliament to decide whether to change the law and that the reasons for this were to do with competence, constitutionality and control of the consequences. 14 Re Y (Mental Patient: Bone Marrow Donation) [1997] Fam 110, [1997] 2 WLR 556, [1996] 2 FLR 787, [1997] 2 FCR 172 (an operation to transplant bone marrow from Y, a mentally and physically handicapped adult, into her terminally ill sister was in Y’s best interests because this would tend to prolong the life of both her sister and her mother). See Chapter 19: Human Organ and Tissue Donation, para 19.16. 15 In Re A, given the grave issues raised by the decision to undertake treatment which was predictably going to end the life of one of the infants, an application to court was inevitable. The twins’ parents, who were committed Roman Catholics, refused to consent to the separation necessitating an application to the court by the medical team in any event.

Withholding and withdrawing life-sustaining treatment Withholding treatment 4.34 Doctors are under a duty to give their infant patients medical care and attention. Where a doctor fails in their duty to treat a child patient and the child dies as a result of that failure, the doctor may be liable to prosecution under the law of homicide. There is: ‘… no special law in this country which places doctors in a separate category and gives them special protection over the rest of us.’1 Nevertheless, it is accepted that in certain situations, where it is in the best interests of the child, doctors can withhold treatment, even where the inevitable result will be the death of the infant. In A Local Authority v A Mother,2 Francis J granted a declaration that it was lawful for a local authority to consent to a hospital’s advanced care plan limiting treatment (in particular, CPR and intubation) for a 13-year-old boy, this being in his best interests. The consent was given pursuant to s 33(3) of the Children Act 1989, a care order being in place. The mother had previously consented and then withdrawn her consent; she was, properly, part of the hearing which reached that conclusion.3 And in Great Ormond Street Hospital for Children NHS Foundation Trust v MBC,4 Peel J granted an application to approve a ceiling of care limiting ventilation treatment to non-invasive ventilation. Whilst it is clear now that ‘best interests’ forms one indivisible test, two subsidiary factors are important: first, the nature of the infant’s disability and

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4.34  Deciding for Others – Children the extent to which she will be burdened by prolonged life; second, the level of suffering that will be caused by the proposed intervention. It is impossible to be prescriptive about different levels of disability. Moreover, it should be remembered that the child’s wider best interests will be determinative, rather than their purely medical interests5 or the medical categorisation of their illness or disability. The Royal College of Paediatrics and Child Health has produced a framework for clinicians when making decisions regarding withdrawing, withholding or limiting life-sustaining treatment.6 It recognises that the guiding principle remains the child’s best interests, but unlike previous editions of the framework there is a move towards placing more emphasis on the recognition of a child’s right to be actively involved in the decision-making process. The framework sets out three sets of circumstances in which it is said to be ethically permissible to consider treatment limitation because it is no longer in the child’s best interests to continue with treatment: ‘1

When life is limited in quantity

If treatment is unable or unlikely to prolong life significantly it may not be in the child’s best interests to provide it. These comprise of brain stem death (as determined by the agreed professional criteria), imminent death where physiological deterioration is occurring irrespective of treatment and, lastly, inevitable death where whilst death is not immediately imminent it will follow and the prolongation of life confers no overall benefit. 2

When life is limited in quality

This includes situations where treatment may be able to prolong life significantly but will not alleviate the burdens associated with illness or treatment itself. Examples include the burdens of treatments where the treatment itself is likely to produce sufficient pain and suffering so as to outweigh any potential or actual benefits; the burdens of the child’s underlying condition where the severity and impact of the child’s underlying condition is likely to produce pain and distress that outweigh any potential or actual benefits in sustaining life; lack of ability to benefit due to the severity of the child’s condition. 3

Informed competent refusal of treatment

In circumstances where an older child with extensive experience of illness may repeatedly and competently consent to withdrawal or withholding of life-sustaining treatment. Where the child is supported in this regard by his parents and by the clinical team there is no ethical obligation to provide life-sustaining treatment. If, however, there is uncertainty about the nature of the child’s condition or its likely outcome, treatment should be continued until greater certainty is possible. The degree of certainty should be proportionate to the gravity of the decision to be taken.’ Where the infant’s condition lies within this schema is a matter that falls within the treating clinician’s competence. However, even skilled clinicians may have difficulty placing a particular child’s situation into one or other of the specific categories. That in itself is not a substantial obstacle: the key is to ensure that the assessment of best interests focuses on the child’s best interests 156

Deciding for Others – Children 4.34 and identifies each of the factors relied upon in carrying out a balancing exercise and reaching a conclusion. The decision as to where the child’s best interests lie is performed in the first instance by their parents, but this is not determinative.7 Where the issue is brought before the court for determination, it is not uncommon for the parents’ assessment of their child’s best interests to be overruled, albeit with due respect for – and sensitivity to – those sincerely held views. The guidance from the Royal College of Paediatrics and Child Health has frequently been referred to and endorsed by the court.8 In the case of Re Jake (A Child)9 Sir James Munby, President of the Family Division, was asked to make an order in care proceedings relating to the medical treatment of a seriously ill ten-month-old child who was not expected to survive early childhood. In determining Jake’s best interests, Sir James considered the relevant factors under the headings ‘Limited quality of life’ and ‘Limited quality of life: where there is no overall qualitative benefit’. Jake’s case fell into the second category because the very invasive treatments that it was proposed to withhold would themselves cause pain and distress. Although the pain, discomfort and distress caused by his existing condition were not such that his life was intolerable, the medical evidence indicated that Jake’s situation was deteriorating and would lead to invasive procedures that would be intolerable. The court noted that the guidance provides: ‘If a child’s life can only be sustained at the cost of significant pain and distress it may not be in their best interests to receive such treatments, for example, use of invasive ventilation in severe irreversible neuromuscular disease’, and an order was made in line with that guidance and as Jake’s best interests demanded.10 The court also observed that it was clear as a matter of law that if the primary purpose of medication was to relieve distress, the fact that it might have the side effect of shortening life did not prevent that treatment from being lawful.11 Practitioners should also note that an attempt to rely on further guidance published by the Royal College of Physicians, ‘Prolonged disorders of consciousness following sudden onset brain injury’ (2020),12 which was concerned with over 16 year olds, was roundly rejected by MacDonald J after hearing expert evidence that such guidance could not be safely relied in proceedings concerning infants.13 1

R v Leonard Arthur (1981) 12 BMLR 1. Dr Arthur was charged with murder in relation to his treatment of a child born with Down’s syndrome. He was alleged to have ordered ‘nursing care only’ and prescribed an appetite-suppressant for the child in accordance with his parents’ wishes. The child died on their third day of life. It was established in evidence that the baby had not died of starvation and also suffered brain and lung damage. The judge reduced the charge to one of attempted murder and Dr Arthur was acquitted by the jury. Dr Arthur’s trial occurred after the Court of Appeal’s decision in Re B [1981] 1 WLR 1421 (see para 4.36, n3 below) although the latter was not cited in court. 2 [2021] EWFC B65. 3 Contrast the position in YY (Children: Conduct of the Local Authority) [2021] EWHC 749 (Fam), as to which see para 4.35 below. 4 [2021] EWHC 2574 (Fam). 5 See paras 4.21ff above. 6 Larcher et al, Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice Arch Dis Child (March 2015) https://adc. bmj.com/content/100/Suppl_2/s1.

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4.34  Deciding for Others – Children 7 See paras 4.24–4.30 above. 8 See, for example: Re Jake (A Child) (Withholding of Medical Treatment) [2015] EWHC 2442 (Fam); Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam); Tafida Raqeeb v Barts NHS Foundation Trust [2019] EWHC 2531 (Admin) and [2019] EWHC 2530 (Fam); Guys and St Thomas’ Children’s NHS Foundation Trust v Pippa Knight [2021] EWHC 25; Manchester University NHS Foundation Trust v Fixsler [2021] EWHC 1426; Great Ormond Street Hospital for Children NHS Foundation Trust v MBC [2021] EWHC 2574 (Fam). 9 [2015] EWHC 2442 (Fam); for further discussion of the guidance and the wording of a court order in such circumstances see Re C (Baby: Withdrawal of Medical Treatment) [2015] EWHC 2920 (Fam). 10 At paras 36–42. 11 At para 43. 12 See bit.ly/29QVAtv. 13 Manchester University NHS Foundation Trust v Fixsler [2021] EWHC 1426 at paras 35–37 and para 89.

Withdrawing treatment 4.35 When intensive treatment has been initiated, the situation may arise where doctors or parents wish it to be withdrawn. The House of Lords decision in Bland1 applies equally to infants as to adults: withdrawing life support does not constitute murder. The test of the child’s best interests applies equally to both withholding and withdrawing life-sustaining treatment.2 Withdrawal of treatment will inevitably engage the Art 2 right to life. While a severely disabled child has a ‘right to life’, they do not have ‘a right to be kept alive’ in circumstances where continued treatment would be contrary to their best interests.3 Withdrawing treatment that is no longer in the child’s best interests will not amount to a breach of Art 2: in Re OT, having recognised this, Parker J granted a hospital trust orders and declarations allowing ventilation to be withdrawn from a seriously ill baby and offering him palliative care to allow him to die with the least possible distress.4 The matter should be referred to the court if there is disagreement (between parents and clinicians or between clinicians) or doubt as to the child’s best interests, or doubts as to the legality of the proposed withdrawal. So in Re AA (A Child),5 an urgent application was made in respect of a 12-year-old child born with a serious brain malformation, whose deterioration was such she would scream in pain for hours on end. Neither morphine nor ketamine were fully effective at relieving her pain. It was accepted that death was inevitable due to the child’s condition, but it was also recognised that she was not ‘actively dying’. Both the Trust and the child’s mother agreed that removing fluids from the child was in her best interests and the court declared that it was lawful to withdraw treatment. Even if a local authority possesses parental responsibility for a child who is the subject of a care order, it cannot rely on s 33(3) of the Children Act 1989 to provide consent to the withdrawal of life sustaining medical treatment given the magnitude of the decision. As King LJ said in Re C: ‘there is a small category of cases where, notwithstanding the local authority’s powers under section 33(3)(b) [Children Act] 1989, the consequences of the exercise of a particular act of parental responsibility are so profound and have such an impact on either the child his or herself, and/or the Article 8 rights of those other parties who share parental responsibility with a local authority, that the matter must come before the court for its consideration and determination.’6 158

Deciding for Others – Children 4.36 In YY (Children: Conduct of the Local Authority),7 a local authority was severely criticised for consenting to the withdrawal of treatment in the absence of court approval with the consequence that the child’s mother arrived at the hospital too late to say goodbye. In such cases, the NHS Trust responsible for treating for the child would normally make an application to the court, but the absence of the same, the local authority should do so. Where a child has been declared dead by clinicians8 following brain stem function tests but the child continues to receive ventilator support, the family may understandably struggle to contemplate ceasing assisted ventilation. Once death has been established, the concept of ‘best interests’ no longer has any legal relevance. In Re M (Declaration of Death of a Child),9 the Court of Appeal upheld a declaration that it was lawful for an NHS trust to withdraw treatment from a baby who had been on mechanical ventilation since birth. An absence of brainstem function equated to clinical death, and in such a case there was no basis for a best interests analysis. In such situations, both the coroner and the High Court theoretically have jurisdiction over the body:10 nevertheless attempts by a coroner to insist upon ceasing ventilation of a child’s body in the face of parental refusal has been met with judicial criticism.11 Airedale NHS Trust v Bland [1993] AC 789; see Chapter 15: Withdrawing and Withholding Treatment, paras 15.9–15.11 for detailed discussion of this case. 2 An NHS Trust v MB [2006] EWHC 507 (Fam) at para 20 per Holman J. See Chapter 15: Withdrawing and Withholding Treatment. 3 For example, NHS Trust A v M [2001] Fam 348; Re OT [2009] EWHC 633 (Fam). 4 [2009] EWHC 633 (Fam). 5 [2014] EWHC 4861 (Fam). 6 Re C (Children) [2016] EWCA 374 per King LJ at paras 57–62, 90–91, 98 and 104. This has been more recently considered and affirmed by the Court of Appeal in Re E [2018] EWCA Civ 550 at para 107. 7 [2021] EWHC 749 (Fam). 8 In 2008 the Academy of Medical Royal Colleges published a Code of Practice for the Diagnosis and Confirmation of Death for the 24 Medical Royal Colleges and Faculties for the United Kingdom and Eire (‘the 2008 Code’). On its publication this Code was welcomed and endorsed by the then Chief Medical Officer (Sir Liam Donaldson) as providing ‘clear, scientifically rigorous criteria for confirming death’. The authors of the Code stressed that it was a statement of current practice which did not (and could not) seek to provide guidance for every single clinical situation where a doctor was required to diagnose death. The 2008 Code does not relate to babies under the age of two months and this gap has been filled by the publication of guidance by the Royal College of Paediatrics and Child Health – Diagnosis of death by neurological criteria (DNC) in infants less than two months old – clinical guidelines (April 2015) (‘the 2015 Guidance’). 9 [2020] EWCA Civ 164. The appropriate declaration is that the patient died at a particular time and on a particular date without more: para 96. See also Re A (A Child) (Medical Treatment: Removal of Artificial Ventilation) [2015] EWHC 443 Fam, the 2008 Code and the 2015 Guidance. 10 The coroner’s power to remove a body within their jurisdiction can be found in s 15 of the Coroners Act 2009. In contrast, the High Court’s jurisdiction can be found either under the parens patriae doctrine and/or under an application for declaratory relief under the High Court’s inherent jurisdiction. 11 Re A (A Child) (Medical Treatment: Removal of Artificial Ventilation) [2015] EWHC 443 Fam. 1

Providing treatment 4.36 A similar approach will be adopted by the courts when considering whether it is in a child’s best interests to provide life-sustaining treatment in 159

4.36  Deciding for Others – Children the absence of parental consent.1 In An NHS Trust v SR2 it was considered lawful for an NHS Trust to proceed with orthodox radiotherapy and chemotherapy treatment on a child in danger of death from a malignant brain tumour. The mother refused to provide consent due to the associated sideeffects and a wish to explore complementary therapies. The father had given his consent to treatment. The court granted the declaration sought, stating that any alternative treatment proposed should be properly tested and be peerreviewed and have a prognosis as to a probable survival rate of not much less than – and preferably equal to – the orthodox treatment applied by clinicians in the UK. In Re B (A Minor) (Wardship: Medical Treatment),3 a child with Down’s syndrome urgently required straightforward surgery to remove an intestinal blockage, without which surgery she would die. Her parents refused to consent. The Court of Appeal held that because it had not been demonstrated that ‘the life of this child is demonstrably going to be so awful that in effect the child must be condemned to die’, the court would make an order that the operation should be performed. The court will adopt a critical and cautious approach to experimental treatment and will require robust evidence based on an assessment of the child in question, as opposed to any generalised approach. Such evidence should be obtained in a transparent manner with the full knowledge of the current treating professionals and, importantly, if after proceedings commenced, with the permission of the court.4 The evidence must demonstrate that such treatment, though unorthodox, is in the child’s best interests. In Re Charles Gard,5 the court refused the declaration sought by Charlie’s parents that it was in his best interests to travel to the USA to receive experimental treatment. After considering the evidence, Francis J held that the proposed treatment offered no real prospect of improving his condition. 1 2 3 4

5

An NHS Trust v Child B [2014] EWHC 3486 (Fam). [2012] EWHC 3842 (Fam). [1981] 1 WLR 1421. The court has been highly critical of clandestine efforts to try and obtain a second opinion from ‘inappropriately qualified foreign medical practitioners’ without knowledge of the current treating hospital or the permission of the court: see Kings College Hospital Foundation Trust v Haastrup [2018] 2 FLR 1028 at paras 15 and 18 and Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam) at para 45. Great Ormond Street Hospital v Yates & Gard [2017] EWHC 972 (Fam); see para 4.26 above. In the appeal to the ECtHR, Gard v UK (Application No 39793/17), the court did not consider it necessary to consider the validity of the argument as to the proper test to be applied when considering parents’ alternative proposed treatment (see paras 114–119). Contrast with the Ashya King case: see above at para 4.29.

Preservation of life: vitally important but not determinative 4.37 Where the court is deciding whether to withdraw treatment it will have to conclude ‘to a high degree of probability’ that it is in the best interests of the child.1 This does not mean, however, that the medical experts giving evidence must be unanimous in a proposed course of action. The court will weigh competing medical evidence and is entitled to reject one line of evidence.2

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Deciding for Others – Children 4.37 The courts approach the exercise of determining best interests against the background of a strong presumption in favour of preserving life. As Lady Black held in An NHS Trust v Y: ‘the determination of the issue that arises in [such cases] must be a full recognition of the value of human life, and of the respect in which it must be held. No life is to be relinquished easily.’3 Where treatment would, be futile, however, it has been held that there is no obligation on the medical profession to provide such treatment.4 It has been suggested in the adult context that the key question to be asked is whether there is any chance of the patient recovering any quality of life so as to justify their continued discomfort.5 Assessments of life quality should be approached cautiously and with due regard for the presumption that favours preservation of life. The concept of ‘intolerability’ of the child’s condition should not be invoked to usurp a comprehensive determination of best interests. It is neither a supplementary test to the ‘best interests’ test nor a gloss on that test. Although it may be a relevant factor in the assessment of best interests, intolerability cannot provide a single determinative test as to best interests.6 The difficulty faced by the court in performing a balancing exercise was highlighted in the 2009 case of RB, a 13-month-old boy who was born suffering from a severe neuro-muscular disorder.7 RB’s condition was static but unlikely to improve. He was a ‘floppy’ baby with virtually no independent movement. He had required ventilating since birth and had failed all attempts to wean him from ventilation. Although it had not been possible to reach a diagnosis with any certainty, the probability was that his condition arose from a defective gene. There was some prospect of research within his lifetime identifying that gene but no realistic prospect of any treatment being developed. RB had been resident on the applicant Trust’s paediatric intensive care unit for eight months and was invasively ventilated through an endo-tracheal tube which passed through his nose. His parents and the clinicians agreed that it was not in his best interests for that to continue. The clinicians and his mother argued that RB’s very poor quality of life weighed in favour of withdrawing ventilation. His father argued that a tracheostomy should be performed so as to allow his discharge home. After six days of evidence the father withdrew his objection and McFarlane J granted declarations relating to the withdrawal of ventilation and the provision of palliative treatment. 1 An NHS Trust v X [2005] EWCA Civ 1145; [2006] Lloyd’s Rep Med 29. 2 Ibid. 3 An NHS Trust v Y [2018] UKSC 46 at para 91. In the context of severely malnourished children, it has been held lawful to provide a feeding tube to feed children who were resisting nutrition. For example, see Re A (A Child) [2014] EWHC 920 (Fam) and see Chapter 13: Feeding. 4 For example: Re L (A Child) (Medical Treatment: Benefit) [2004] EWHC 2713 (Fam), [2005] 1 FLR 491. 5 An NHS Trust v X (see n1 above). 6 Portsmouth NHS Trust v Wyatt [2004] EWHC 2247 at para 24 endorsed by the Court of Appeal in Wyatt v Portsmouth Hospital NHS Trust [2005] EWCA Civ 1181 at para 76 and para 91. R (on the application of Burke) v GMC [2005] EWCA Civ 1003, where the Court of Appeal emphatically rejected Munby J’s assertion that in the context of life-prolonging treatment the ‘touchstone of best interests is intolerability’ (paras 61–63). 7 In the matter of RB (A Child) [2009] EWHC 3269 (Fam); [2010] 1 FLR 946.

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4.38  Deciding for Others – Children

Pain 4.38 In some cases it has been argued that no physical harm could be caused by the continuation of life-sustaining treatment to a child who has no capacity to feel pain and no conscious awareness. This argument was considered and rejected by Poole J in Pippa Knight who held it would be an ‘error’ to allow the absence of pain or of any sensation to prevent a wider consideration of welfare incorporating a consideration of physical and other harm or detriment to the child: ‘Physical interventions to prolong life should not be regarded as irrelevant to the consideration of welfare, just because the patient has no conscious awareness and cannot experience pain. Any proper assessment of welfare in a case involving life sustaining treatment ought to take into account the nature and extent of the interventions necessary to keep the patient alive. Clearly much greater weight should be given to the harm caused by those interventions if the patient can feel pain or discomfort. If Pippa were able to experience pain and discomfort when undergoing the multiple invasive procedures she undergoes each day, that would be highly material to the assessment of her welfare. But her loss of conscious awareness does not mean that those interventions can now be wholly disregarded. … Both [Pippa’s] ongoing condition and her necessary treatments in the PICU constitute burdens upon her person notwithstanding her lack of conscious awareness. In any event, the absence of pain is not the same as the absence of harm. The fact that a person has no conscious awareness does not give their clinicians, or anyone else, licence to perform procedures on them irrespective of their benefit. Compensation payments for “loss of amenity” have been made to patients who are in a coma because the law recognises that even the fully unconscious individual may experience a loss of function and a diminished quality of life even if they do not suffer pain – Wise v. Kaye[1] and H. West & Sons Ltd. v. Shephard,[2] applied in Lim Poh Choo v Camden & Islington Area Health Authority.[3] The losses of freedom, function, and ability to enjoy childhood, that severe disability, including severe brain damage, cause someone such as Pippa, are a form of harm which should be considered in assessing her welfare, whether or not they can feel pain and whether or not they have any conscious awareness.’4 The Court of Appeal held that Poole J: ‘was entitled to conclude Pippa could experience physical harm from her condition and medical treatment notwithstanding that she has no capacity to feel pain and no conscious awareness.’ Baker LJ considered that: ‘By focussing on the presence or absence of pain and failing to recognise the physical harm which an insensate patient may suffer from her condition or treatment, a decision-maker may fail to consider the child’s welfare in its widest sense.’5 1 2 3 4 5

[1962] 1 QB 638. [1964] AC 326. [1980] AC 174. Guy’s and St Thomas’ Children’s NHS Foundation Trust v Knight [2021] EWHC 25 (Fam) at para 76. See further discussion of the case at para 4.27 above. Parfitt v Guy’s and St Thomas’ Children’s NHS Foundation Trust [2021] EWCA Civ 362 at paras 61–62.

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Deciding for Others – Children 4.40

Dignity 4.39 In Guys and St Thomas’ Children’s NHS Foundation Trust v Pippa Knight, Poole J held that the absence of any agreed or objective concept of dignity provided limited assistance to the court in helping to identify what was in a child’s best interests: ‘The concept of “dignity” to which MacDonald J referred in Raqeeb… and which has influenced the view of Dr Playfor, is, I believe, problematic and does not assist me in identifying what is in Pippa’s best interests. In an adult or older child the concept of dignity might be linked to their exercise of autonomy and be a crucial factor in determining what is in their best interests, but that factor does not apply in the case of a young child like Pippa, whose values, beliefs, and wishes, cannot reliably be ascertained or inferred. Perhaps we all think we can recognise human dignity when we see it, but there is obviously a high degree of subjectivity involved in describing someone’s life or death as having dignity … There is a wide range of opinion as to what constitutes a dignified death … I take into account the views of Pippa’s mother and of others about her best interests, but given the very different ideas expressed to the court about what would constitute dignity for Pippa in life and in her dying, I shall not presume to adopt some supposedly objective concept of dignity to determine her best interests.’1 In Raqeeb MacDonald J recognised the inherent difficulties in reaching a precise and universally accepted definition of ‘dignity’ but was willing to find that factors such as human dignity and the benefits of being cared for by a loving family as opposed to by hospital personnel in an intensive care unit, ought to be weighed in the balance even for a child with very limited conscious awareness.2 Dignity is a fundamental value of human existence and it is inevitable that it will continue to be asserted in such cases that a particular course of action will promote the dignity of a child or avoid imposing a burden of indignity. The appellate courts have, so far, not found it necessary to determine the role played by the concept of dignity in decisions of this sort.3 As such, in the absence of any commonly agreed or judicially approved definition of what ‘dignity’ would amount to in the context of a child who is seriously unwell, reliance on promoting dignity – or avoiding indignity – is unlikely to be, by itself, a determinative factor for the court in identifying whether it is in a child’s best interests to prolong or withdraw life-sustaining treatment. 1

Guys and St Thomas’ Children’s NHS Foundation Trust v Pippa Knight [2021] EWHC 25 at para 86. The Court of Appeal did not consider it necessary to address the point. See further discussion of the case at para 4.27 above. 2 Tafida Raqeeb v Barts NHS Foundation Trust [2019] EWHC 2531 (Admin) and [2019] EWHC 2530 (Fam) per MacDonald J at paras 176–177. See also Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam) at paras 54–56, where Hayden J rejected the contention that Alfie’s life in hospital was without dignity, saying that the atmosphere round his hospital bed was ‘peaceful, dignified and … very happy.’ 3 In the Pippa Knight appeal, the Court of Appeal did not consider it necessary to decide this point when refusing the appeal: see Parfitt v Guys and St Thomas’ Children NHS Foundation Trust [2021] EWCA Civ 362 at paras 98–100.

Balance sheet 4.40 The courts previously encouraged the use of a best interests ‘balance sheet’ in which parties may list their submissions as to the benefits and 163

4.40  Deciding for Others – Children burdens – or disbenefits – of proposed treatment.1 This exercise had been considered to assist the court in performing the best interests balancing exercise. It goes without saying that there is always ‘a benefit’ to being alive as distinct from the finality of the alternative, but such a benefit may not outweigh the associated burdens and disadvantages of prolonging life.2 In recent years the court’s reliance upon a balance sheet exercise has come under critical scrutiny by a number of senior judges. In Re F,3 McFarlane LJ said that, while a balance sheet may be of some assistance to judges when attempting to evaluate competing welfare issues relating to a child, their mechanistic use may lead to a failure to apply appropriate weight to more important factors when assessing best interests: ‘… use [of a balance sheet] should be no more than an aide memoire of the key factors and how they match up against each other. If a balance sheet is used it should be a route to judgment and not a substitution for the judgment itself. A key step in any welfare evaluation is the attribution of weight, or lack of it, to each of the relevant considerations; one danger that may arise from setting out all the relevant factors in tabular format, is that the attribution of weight may be lost, with all elements of the table having equal value as in a map without contours.’4 The Vice-President of the Court of Protection, Hayden J, has been even more critical of adopting a balance sheet approach. In the context of an adult medical treatment case, in Cambridge University Hospitals NHS Foundation Trust v AH, he held: ‘Though the attraction of such an exercise is beguiling, it is rarely, in my experience, productive. An assessment of ‘best interests’ must, ultimately, survey the whole landscape of a patient’s medical, welfare and emotional needs. The importance of ‘sanctity of life’ cannot be weighed effectively, for example, against the frustration of being unable to generate communication or the unrelenting distress of an infected bed sore. They are conceptually different and therefore, to my mind, logically resistant to a balance sheet exercise.’5 1

Re A (Male Sterilisation) [2000] 1 FLR 549 per Thorpe LJ at 560F–560H. An NHS Trust v MB [2006] EWHC 507 (Fam) at para 59 per Holman J. 2 See NHS Trust v W [2015] EWHC 2778 (Fam). 3 Re F (A Child) (International Relocation Case) [2015] EWCA Civ 882. 4 Ibid, para 52. 5 Cambridge University Hospitals NHS Foundation Trust v AH (Serious Medical Treatment) [2021] EWCOP 51 per Hayden J at para 66. See also An NHS Foundation Trust v QZ [2017] EWCOP 11 at para 25; and Kong et al, An Aide Memoire for a Balancing Act? Critiquing The ‘Balance Sheet’ Approach to Best Interests Decision-Making (2020) 28 Medical Law Review 753–780. See generally Chapter 3: Deciding for others – adults, at paras 3.15–3.16.

G PROCEDURE 4.41 Mostyn J in Re JM (A Child)1 held that if the relief sought includes final binding declarations – which will normally be the case in serious medical cases – the application should be framed as a combination of: (a)

(b)

an application for a specific issue order seeking the necessary leave under s 10(2)(b) of the Children Act 1989 (power of the court to make a section 8 Order with respect to any child on the application of a person who has obtained leave); and an application for declaratory relief under the inherent jurisdiction. 164

Deciding for Others – Children 4.42 The dual approach allows the application to be issued directly by the High Court where it will be listed before a full time High Court judge.2 Such a procedure will inevitably add an incidental benefit that those opposing the application will be in a better position to claim legal aid. In practice, however, many applications are simply made under the inherent jurisdiction of the High Court, and this does not usually present any problems.3 1

[2015] EWHC 2832 (Fam). Re JM concerned a ten-year-old child who required urgent cancer treatment but whose parents did not consent to the necessary surgery. The application was brought and issued by the NHS Trust in the High Court and framed under the court’s inherent jurisdiction. The issue before the court was ‘a question that had arisen in connection with an aspect of parental responsibility for a child’ and therefore the relief that should have been sought was a specific issue order under s 8 of the Children Act 1989. 2 Re JM (A Child) (n1 above), paras 26 and 27. If the application was made as a section 8 application, it must be issued in the Family Court and any judge of the Family Court could hear the application. 3 See generally Chapter 6: Going to Court. And note that a judge of the Family Division is available 24 hours a day to hear urgent applications when necessary; see for example An NHS Trust v D (Out of Hours Application) [2021] EWHC 2676 (Fam).

Practical tips 4.42 In preparing or opposing any application for withdrawal of treatment it will be critical for all relevant evidence to be placed before the court. Where an application is made to the court for a declaration that it will be lawful for doctors to withhold or withdraw life-sustaining treatment the courts frequently have to assess a significant amount of evidence under pressure of time. Applications to adjourn a hearing on the basis, for example, that there has been insufficient time to consider extensive medical records may not be successful if detailed witness statements have been provided by the clinicians involved in a child’s care.1 The courts may be assisted by video evidence showing how well or badly a child is able to interact with their surroundings. The oral testimony of nurses and those with day-to-day management of severely injured or disabled children is likely to provide a useful context for any balancing exercise. Careful scrutiny of medical records may reveal a hitherto unrecognised ability to interact with play therapists or other carers. If time permits, the option of using mediation or other forms of alternative dispute resolution at the earliest opportunity should be considered to try and promote agreement about what is in the best interests of the child or at least narrow the issues in dispute.2 The preparation of focussed agendas and joint meetings between the opposing experts may also narrow or remove any areas of disagreement. Careful handling of both medical and lay clients by legal advisors can minimise the adverse impact on the therapeutic relationship and may well promote a consensual outcome. If a court application is inevitable, it should be brought as soon as that becomes apparent. Consideration should be given to how the child will participate in the proceedings, if that is appropriate, and in any event whether there should be some form of judicial visit.3 Consideration should also be given as to whether (and if so, how) the child’s parents will do so, bearing in mind the difficulties they may experience in obtaining legal representation. 165

4.42  Deciding for Others – Children 1 NHS Trust v W [2015] EWHC 2778 (Fam). 2 See para 4.20 above. 3 See para 4.23 above.

H  MENTAL HEALTH ACT 1983 Admission to hospital Young people aged 16–17 and Gillick competent children 4.43 The Mental Health Act 1983 (‘MHA’) in general terms is outside the scope of this book, but for comparative purposes we include a summary of the law on consent to mental health treatment, since there is an obvious comparison to be drawn. Surprisingly, perhaps, it is clearer than the law relating to consent and refusal of treatment for physical conditions. A young person of 16 and over may validly consent to informal or voluntary admission to hospital for treatment for a mental disorder and may also refuse such admission, even if those with parental responsibility consent.1 Although a Gillick competent child does not have the same statutory overriding right to consent to or refuse voluntary admission under the MHA, the same approach is set out in the MHA Code of Practice as to those aged 16 to 17, where it is considered not advisable to rely on parental consent in the case of a competent child.2 If a child has been made a ward of court, leave must be obtained from the court before an application for compulsory admission to hospital under Part II of the MHA is made.3 1 MHA (as amended), s 131(2)–(5); MHA Code of Practice 2015 (England), paras 19.39 and 19.53. For the English Code of Practice see www.gov.uk at bit.ly/2ahzopD, and Mental Health Act 1983: Code of Practice 2016 (Wales), paras 19.12 and 19.26. For the Welsh Code of Practice see bit.ly/3EVrZsBf. See Chapter 13: Feeding, paras 13.8–13.9 below. 2 MHA Code of Practice 2015 (England), paras 19.39 and 19.66. 3 MHA, s 33(1).

Treatment Mental Health Act 1983: Code of Practice 4.44 Consideration of the potential implications of Art 8 of the ECHR has led to further guidance being issued to health professionals as to whether they should rely upon parental consent in all circumstances. The most recent Code of Practice to the MHA1 suggests that there is a ‘scope of parental responsibility’ (previously the ‘zone of parental control’) for treatment of children, outside which court approval may be required. To establish whether a decision falls within the ‘scope of parental responsibility’ the doctor must ask two ‘key questions’: First: ‘… is this a decision that a parent should reasonably be expected to make?’ Second: ‘… are there any factors that might undermine the validity of parental consent?’2 166

Deciding for Others – Children 4.45 In respect of the first question, the Code advises that if the decision goes beyond the kind of decisions parents routinely make in relation to the medical care of their child, clear reasons as to why it is acceptable to rely on parental consent to authorise this particular decision will be required. When considering this question, any relevant human rights decisions made by the courts should be taken into account. Significant factors in determining this question are likely to include: (a) (b) (c) (d)

the type and invasiveness of the proposed intervention – the more extreme the intervention, the greater the justification that will be required; the age, maturity and understanding of the child or young person; the extent to which the decision accords with the wishes of the child or young person; whether the child or young person had expressed any views about the proposed intervention when they had the competence or capacity to make such decisions.

As to the second question, irrespective of the nature of the decision being proposed, there may be reasons why relying on the consent of a person with parental responsibility may be inappropriate. The examples given include: (a) (b)

(c) (d)

where the parent is not able to make the relevant decision (due to lack of capacity); where the parent is not able to focus on what course of action is in the best interests of their child and finds it difficult to separate the decision whether to consent to their child’s admission to hospital from their own hostilities (for example, where the parents have gone through a particularly acrimonious divorce); where the poor mental health of the child or young person has led to significant distress and/or conflict between the parents, so that they feel unable to decide on what is best for their child; where one parent agrees with the proposed decision but the other is opposed to it.

If the decision is not one that a parent would reasonably be expected to make, or there are concerns about the validity of the consent of the person with parental responsibility, it will not be appropriate to rely on parental consent. In such cases, the proposed intervention must be lawfully authorised by other means. If necessary, an application to the court should be made. 1

2

Department of Health, Code of Practice to the Mental Health Act 1983 (TSO, 2015). The Code is issued under s 118 of the MHA. While s 118 imposes no legal duty to comply with the Code, the introduction (paras ii, iii and v) provides that registered medical practitioners, approved clinicians and approved mental health professionals must have regard for the Code and record any departures from it: ‘Departures from the Code could give rise to legal challenge, and a Court, in reviewing any departures from the Code, will scrutinise the reasons for the departure to ensure that there is sufficiently convincing justification in the circumstances.’ Code, para 19.41.

I CONCLUSION 4.45 The law in relation to seriously ill infants is well-established. As referred to above, in recent years there have been a number of high profile and heavily litigated decisions which have sought to establish an alternative 167

4.45  Deciding for Others – Children threshold where the court can intervene in medical treatment decisions. These attempts have been unsuccessful and the ‘best interests’ test remains the sole test. It would appear that any change to the best interests test will now rest with Parliament rather than the appellate courts.1 Complexity will arise in applying the best interests test to challenging facts.2 The volume of ‘hard cases’ involving critical decisions at the very beginning of life will continue to increase in correlation with advances in neonatal technology. These fraught best interests cases will continue to appear in the courts and national and international newspaper headlines. While there is a greater appreciation and respect for children’s rights and autonomy within the medical profession and by the courts, the law in respect of decisions involving 16- and 17-year-olds and younger Gillick competent children to refuse treatment also appears to be reasonably settled, namely that the final authority will continue to rest with the court. As confirmed by Sir James Munby in Re X (A Child) (No 2), the evolving jurisprudence arising out the HRA and UNCRC has not changed the common law in this respect.3 Again, any change is likely to be a matter for Parliament, not the courts. 1

At the time of writing, there does not appear to be any intention by the government to introduce any change to this highly sensitive area of law. In February 2020, a Private Member’s Bill: Child (Access to Treatment) Bill (also referred to as ‘Charlie’s Law’) was tabled before the House of Commons. It failed to complete its passage through Parliament before the end of the session, meaning the Bill will make no further progress. See also para 14.26, n8 below. 2 Whilst it is clear that there are no hard and fast rules when treating clinicians and the courts grapple with the issue of treatment for severely ill children, this must be correct as each individual child’s case will have its own nuances extending beyond the scope of their individual medical condition. The best interests test allows for the individual child to be considered with the degree of sensitivity and flexibility that is required in what is likely to be an incredibly difficult situation for parents, treating clinicians, lawyers and the child themselves. 3 For a detailed exploration of how medical treatment decisions concerning children are taken in different jurisdictions, see: Goold, Auckland and Herring, Medical Decision-Making on Behalf of Young Children: A Comparative Perspective (Hart Publishing, 2020). For a penetrating analysis on the duties which doctors have to children in their care and public responsibilities in relation to the medical treatment of children and appendix of all reported medical treatment cases involving children up to 30 April 2020, see Bridgeman, Medical Treatment of Children and the Law: Beyond Parental Responsibilities (Routledge Publishing, 2021).

For updating material and hyperlinks related to this chapter, see www.serjeantsinn.com/news-and-resources/medical-treatment-decisions/

168

Chapter 5

Restraint and Deprivation of Liberty

A B

C

Introduction 5.1 Restraint 5.8 Restraint permitted under the MCA  5.11 The statutory defence  5.11 Limits to the statutory defence  5.14 Necessity 5.15 Proportionality and restraint  5.16 Restraint and Article 3 ECHR  5.18 Covert medication and deception  5.23 Deprivation of liberty  5.24 Background: ‘the Bournewood gap’  5.24 What is a ‘deprivation of liberty’?  5.29 Cheshire West 5.29 The position prior to the Supreme Court decision in Cheshire West 5.30 The ECtHR definition  5.32 The decision in Cheshire West 5.35 The facts in MIG and MEG  5.35 The facts in P v Cheshire West 5.38 The reasoning in Cheshire West 5.40 Identifying a deprivation of liberty: ‘a gilded cage is still a cage’ 5.45 The acid test  5.52 The impact of the decision in Cheshire West 5.53 Identifying a potential deprivation of liberty in the hospital context  5.55 Place and duration of the patient’s stay  5.59 Deprivation of liberty for serious medical treatment: NHS Trust v FG 5.61 Admission to an intensive care unit: R (Ferreira) v HM Senior Coroner for Inner South London 5.67 Ferreira in the Court of Appeal  5.68 Children and deprivation of liberty  5.70 Children under 16  5.70 Minors of 16–17 years  5.72 Pointers for practitioners considering unclear cases  5.74 Is there a deprivation of liberty?  5.74 Contingency declarations  5.79 169

5.1  Restraint and Deprivation of Liberty D

E F G

Authorising a deprivation of liberty  5.80 Procedure 5.84 MCA/Inherent jurisdiction?  5.85 Review 5.86 DOLS authorisation  5.88 Is the patient ineligible to be detained under the MCA?  5.93 The Mental Capacity (Amendment) Act 2019  5.105 Section 4B – Life-sustaining treatment or vital act  5.106 Schedule AA1 – the LPS regime  5.107 Practical issues  5.115 Conclusion 5.120

A INTRODUCTION 5.1 Lurking in the background of any consideration of the treatment to be given to somebody who lacks capacity is the prospect of compelling the patient to receive the care or treatment – whether they like it or not – and whether or not they are prepared to agree or cooperate. Restraint (physical or chemical) may be required to get a patient to the hospital, as well as to achieve the desired assessment and/or treatment of the patient once they arrive, and to transfer them back. Particularly where an incapable patient cannot understand the benefits of undergoing an uncomfortable or anxiety-provoking procedure, their forcible resistance to the intervention may need to be overcome before the treatment that is deemed to be in their best interests can be safely delivered. It is the lawfulness of such actions that is the subject of this chapter. From the outset it is important that a distinction is made between the lawfulness of the treatment itself (the subject of many other chapters in this book), and that of the associated compulsion that might prove necessary in order to deliver it. In making this distinction, it must be recognised that there are many occasions when a proposed medical treatment intervention can be practicably achieved only if some degree of restraint of the patient is employed. In some cases the nature or degree of this restraint will itself be a significant factor, even the deciding factor, in determining whether the treatment is in the person’s best interests.1 1 See Chapter 3: Deciding for others – Adults; and see for example SS v London Borough of Richmond Upon Thames [2021] EWCOP 31, where authorisation for vaccination was refused, in part because restraint would be required to achieve it.

5.2 It has long been recognised that reasonable and proportionate restraint may be a necessary adjunct to the proposed treatment of physical disorder and hence justified under the common law doctrine of necessity if in the incapable patient’s best interests. This principle is now enshrined, and defined, in the Mental Capacity Act 2005 (‘MCA’). The courts providing declaratory relief, however, have always been and still remain keen to scrutinise both the necessity for, and proportionality of, any restraint proposed or employed.1 1

See for example Re CR [2021] EWCOP 19, where the court authorised the proposed treatment (vaccination) but expressly did not authorise restraint to achieve it.

5.3 Prior to the MCA, these matters were considered under the High Court’s inherent jurisdiction. The MCA contains a statutory basis for lawfully restraining an incapable adult,1 and a judge sitting in the Court of Protection 170

Restraint and Deprivation of Liberty 5.5 has the jurisdiction to declare such acts lawful under MCA s 15(1)(c), or to make personal welfare orders under MCA s 16(2)(a) which, per s 4A, provide a lawful basis for a deprivation of liberty. Outside the jurisdiction of the Mental Health Act 1983 (‘MHA’), care or treatment which amounts to a deprivation of liberty can now be authorised: ●● ●● ●●

by the Court under MCA s 16(2)(a); or by the Supervisory Body under MCA Sch A1 (the Deprivation of Liberty Safeguards);2 or in emergency situations involving life-sustaining treatment or vital acts, under MCA s 4B.3

On 16 May 2019 the Mental Capacity (Amendment) Act 2019 (‘MC(A)A’) received Royal Assent. The legislation provides for new Sch AA1 to be inserted into the MCA4 and for the repeal of Schs A1 and 1A from the MCA,5 thereby replacing the Deprivation of Liberty Safeguards (‘DOLS’) with the Liberty Protection Safeguards (‘the LPS’).The original implementation date of 1 October 2020 has been repeatedly postponed along with the drafting of the necessary regulations and a Code of Practice, which is to be followed by a public consultation on the draft regulations and Code of Practice.6 At the time of publication, the date by which this will be achieved is uncertain. This chapter focuses on the law currently in force, but the proposed amendments to the MCA which will be made by the MC(A)A are considered towards the end of this chapter.7 1

The general provisions under MCA s 6 in respect of restraint apply to those aged 16 and over; the MCA provisions relating to deprivation of liberty in Sch A1 apply only to those aged 18 and over. 2 See paras 5.88–5.92 below. Restraint must be recorded carefully and accurately in any care plan and monitored by the statutory body responsible for commissioning the person’s care: AJ (Deprivation of Liberty Safeguards) [2015] EWCOP 5 at paras 25–26. 3 See paras 5.82–5.84 below. 4 MC(A)A s 1(4). 5 MC(A)A para 2, Sch 2. 6 See Department of Health and Social Care LPS Implementation Newsletter, dated 28 September 2020: bit.ly/3oG6qXl; and the most recent update 16 December 2021, confirming that the target date of April 2022 would not be met: see bit.ly/DHSC-16-Dec-21. 7 See paras 5.105–5.114 below.

5.4 Many of the established common law principles still apply to decisions regarding restraint and deprivation of liberty under the MCA. Issues of necessity and proportionality are still paramount, and, together with best interests, are addressed within the MCA’s statutory framework. The question of what is a restraint and what is a deprivation of liberty continues to be relevant, and if there is doubt, the safe route is to obtain the necessary authorisation for a deprivation of liberty. 5.5 This chapter is not concerned with issues of restraint and deprivation of liberty in order to provide treatment for mental disorder under the MHA, which is fully dealt with in other works. This chapter focuses on restraint and deprivation of liberty for the purpose of providing medical treatment and ancillary care for purely physical conditions which cannot be provided under the MHA. It would be wrong to assume that detention of a patient for one purpose (mental health treatment) is sufficient to authorise continued or further detention for another (physical health treatment).1 MHA s 63 only permits treatment for the mental disorder from which the detained patient 171

5.5  Restraint and Deprivation of Liberty is suffering, although this may include physical conditions arising from the mental disorder.2 While the distinction between treatment for a physical condition and treatment for a mental disorder, or a manifestation of a mental disorder, must be maintained, it is not always easy to do so. There is a complex exercise to be conducted when considering which statutory regime should apply. An initial view that the MHA always took primacy over the MCA as the appropriate regime for authorising a deprivation of liberty is no longer correct.3 Thus, where a patient requires treatment in hospital for a physical condition related to a mental disorder, but does not have capacity to consent to, or refuse, informal admission, it may be necessary to consider whether the DOLS regime is the more appropriate regime for authorisation.4 1

Munjaz v UK (Application No 2913/06) [2012] MHLR 351, Times, 9 October 2012, concerning a detained psychiatric patient placed in seclusion, confirms that an authorisation to detain does not necessarily authorise all and any detention. The ECtHR considered that a detained patient may have a ‘residual liberty’, which, if it was to be further lost, would require further authorisation. Munjaz was applied in A Local Health Board v AB [2015] EWCOP 31 (although the court’s analysis of the consequences on the facts has been confirmed to be incorrect in An NHS Trust v Dr A [2013] EWHC 2442 (COP)). Typically, this may occur if P is deprived of their liberty for treating a physical health issue, especially if the deprivation is more substantial or in a different place. 2 See B v Croydon HA [1995] Fam 133; and CC [2020] EWHC 574 (Fam)). It does not permit treatment of physical conditions unrelated to the patient’s mental disorder. See Chapter 13: Feeding, paras 13.17–13.23. 3 AM v South London & Maudsley NHS Foundation Trust [2013] UKUT 365 (AAC). 4 There is not always a choice, as someone who is detained or detainable under the MHA may be ineligible to be deprived of their liberty under the MCA. See paras 5.93–5.104 below.

5.6 Where a patient detained under the MHA is transferred to a general hospital for treatment or investigation of a physical health concern, then provided the proposed medical treatment is not inconsistent with the treatment regime under the MHA, the patient is eligible (in the language of the MCA, ‘not ineligible’) to fall within the MCA scheme for authorisation of restraint or deprivation of liberty.1 In some circumstances s 17(3) of the MHA may be a relevant alternative, under which the detained patient’s responsible clinician can direct in writing that the patient, on temporary leave from the psychiatric hospital, shall remain in the ‘custody’ of any person authorised in writing by the managers of that hospital. In practice, where there is any doubt about where the patient’s interests lie in relation to the proposed treatment, which will usually be the case where the patient is resisting, the court’s authorisation under the MCA is sought. Where it has been thought that necessary treatment could be authorised neither under the MHA or MCA, the court’s inherent jurisdiction has been relied on.2 1 See paras 5.93–5.104 below. See also An NHS Trust v A [2015] EWCOP 71, [2016] Fam 223, suggesting that the contrary conclusion reached in A Local Health Board v AB [2015] EWCOP 31 was incorrect. See also Re CD [2015] EWCOP 74, which reiterated that it was possible for leave under s 17 of the MHA to be given to a general hospital for purposes of providing treatment in circumstances amounting to a deprivation of liberty without needing recourse to the inherent jurisdiction. Save where the treatment itself is serious medical treatment which requires the sanction of the court, Sch A1 DOLS may be used to authorise the patient’s deprivation of liberty. 2 See An NHS Trust v Dr A [2013] EWHC 2442 (COP), though note the unusual decision in that case stemmed from the court’s decision that Dr A’s hunger strike was not a symptom or manifestation of his mental disorder. The contrary suggestion in A Local Health Board v AB [2015] EWCOP 31 is now accepted to be incorrect.

172

Restraint and Deprivation of Liberty 5.9 5.7 A useful hierarchy to bear in mind throughout this chapter is the degree of infringement of a person’s personal liberty and how these different degrees of restriction are addressed in the MCA: ●●

Acts done in the everyday care and treatment of an incapable person that would amount to a trespass if not authorised: MCA s 5 provides a defence against liability where the healthcare professional providing the care or treatment has taken reasonable steps to establish that the patient lacks capacity, and reasonably believes both that the patient does not have capacity, and that the treatment is in their best interest.1 If such acts are done which also amount to restraint,2 then provided the degree of restraint falls short of a deprivation of liberty, lawful authority may be provided under MCA s 6 provided certain conditions in s 6 are met: a reasonable belief, on the part of the person doing the act, in its necessity; that the act is a proportionate response to the likelihood of the patient suffering harm, and the seriousness of that harm; and that the act does not conflict with a valid decision of the patient’s lasting power of attorney, or deputy.3 Where the person is (or may be) deprived of their liberty, the authority for such deprivation of liberty may be via:

●●

●●

(a) (b) (c) (d) (e)

a court order made by the Court of Protection (see ss 4A and 16(2)(a)); reliance on s 4B in an urgent situation pending a court decision; an authorisation granted pursuant to Sch A1; the MHA; or in some circumstances, a court order made under the inherent jurisdiction of the High Court.4

1 Chapter 3: Deciding for others, para 3.10 above. 2 See definition of ‘restraint’ in s 6(4) of the MCA set out at para 5.8 below. 3 See paras 5.12 and 5.82 below. 4 See para 5.85 below.

B RESTRAINT 5.8

‘Restraint’ is defined in MCA, s 6(4) as follows:

‘For the purposes of this section D [a person] restrains P [a patient] if he – (a) uses, or threatens to use, force to secure the doing of an act which P resists, or (b) restricts P’s liberty of movement, whether or not P resists.’ Importantly, verbal restraint (‘threatens to use force’) as well as physical restraint will fall within the MCA definition. 5.9 For the capable patient, physical restraint in the absence of consent or other lawful authority will amount to a civil trespass to the person and may amount to a crime, depending upon the severity and impact of the restraining measure. Only the restraint of incapacitated persons is considered further in this chapter. The fundamental principle must be borne in mind that, in the absence of proper authorisation, the restraint of an incapacitated person will amount to an assault.

173

5.10  Restraint and Deprivation of Liberty 5.10 A patient’s capacity (or lack of it) is issue-specific; the patient may lack capacity to consent to the specific medical procedure proposed whilst having capacity for all other decisions. This was the case in the common law, but is plain from the provisions of s 3 of the MCA, and the fact that the ‘relevant information’ that the patient needs to, in the broadest sense, ‘use’ to make the decision, will differ according to the nature of that decision.

Restraint permitted under the MCA The statutory defence 5.11 The MCA recognises that restraint will on occasions be necessary when caring for the health and welfare of those who lack capacity and, hence, MCA s 6 extends the general authority under MCA s 5 to treat incapable patients in their best interests to include the use of restraint where two specific conditions are satisfied: ●● ●●

‘The first condition is that D reasonably believes that it is necessary to do the act in order to prevent harm to P.’1 ‘The second is that the act is a proportionate response to –– the likelihood of P’s suffering harm, and –– the seriousness of that harm.’2

Necessary and proportionate restraint can also be authorised by someone with lasting power of attorney3 or by a court appointed deputy, providing that the deputy is acting within the scope of the authority that has been expressly conferred on them by the court.4 1 2 3 4

MCA, s 6(2). MCA, s 6(3). MCA, s 11. MCA, s 20. The welfare deputy must have been given sufficient powers by the Court under MCA, s 16(5) which states: ‘The court may … confer on a deputy such powers or impose on him such duties, as it thinks necessary or expedient for giving effect to, or otherwise in connection with, an order or appointment made by it under subsection (2).’

5.12 As the MCA is confined to those who lack capacity ‘because of an impairment of, or a disturbance in the functioning of, the mind or brain’, s 6 does not apply to the restraint of those deemed incapable of giving valid consent for other reasons. Where consent has not been given, the authorisation for restraint in other situations (such as for children) will continue to be under the High Court’s inherent jurisdiction.1 1 See para 5.85 below.

5.13 Thus, restraint short of deprivation of liberty can lawfully be used without any further authorisation where it is reasonably believed that it is necessary to prevent harm and the restraint used is proportionate to the likelihood and seriousness of that harm. The restraint must also be in the person’s best interests.1 1

MCA, s 1(5).

174

Restraint and Deprivation of Liberty 5.15

Limits to the statutory defence 5.14 However, if there comes a point when the restriction of the person’s liberty intensifies to the point where it becomes a deprivation of their liberty, this cannot be authorised under MCA s 5 and s 6,1 even where the purpose of the deprivation of liberty is to deliver medical treatment to an incapable person in their best interests. Where the circumstances amount to a deprivation of liberty, this can be lawfully effected only where either: ●● ●● ●●

the deprivation of liberty has been ordered or authorised by the Court of Protection,2 or authority has been given under the ‘Hospital and Care Home Residents: Deprivation of Liberty’ procedures of MCA Sch A1,3 or in an emergency whilst a court decision is obtained. The emergency power arises only if the detention is necessary to provide treatment aimed at sustaining life or preventing a serious deterioration in the patient’s condition.4

The authorisation of the Court of Protection can of course be sought at the same time for the medical treatment, the restraint required to carry out the treatment and (if necessary) the deprivation of liberty that the degree and/or duration of the restraint would cause.5 An application to the Court of Protection must be made where, in the absence of an order authorising the medical treatment, it would be unlawful to impose the restraint.6 1 By virtue of MCA, s 4A(1). 2 Under MCA, s 16(2)(a). 3 See paras 5.88–5.92 below. 4 MCA, s 4B; see paras 5.81–5.84 and 5.106 below. 5 In Re D [2010] EWHC 2535 (COP), the patient was a 69-year-old woman with a long history of schizophrenia who lacked capacity to make decisions concerning her medical treatment. She had a prolapsed uterus and needed a hysterectomy. In the circumstances, a lengthy period of sedation would be required. Mrs Justice Macur sanctioned the proposed care plan, acknowledging that it may well amount to a deprivation of liberty. 6 In Re FG [2014] EWCOP 30, [2015] 1 WLR 1984, authorisation was given for forced obstetric treatment during labour, including where necessary restraint and deprivation of liberty. See paras 5.61–5.66 below.

Necessity 5.15 Given the ‘24/7 availability’ of the High Court and the statutory provisions of the MCA, hospitals and clinicians should be slow to rely on the common law doctrine of necessity. It is possible it would apply in an unforeseeable emergency where it was not possible to bring the case to court before the deprivation of liberty had concluded and where the deprivation could not be authorised under any other statutory power. It is unlikely to be available where the hospital could have, but did not, apply for a standard or urgent authorisation: the common law defence of necessity could not provide a justification for interference with a patient’s Arts 5 and 8 ECHR rights if the clinicians were to seek to ignore the protections afforded to

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5.15  Restraint and Deprivation of Liberty the patient by the statutory scheme.1 This doctrine also may not be relied upon by healthcare staff where the reason why a standard or urgent authorisation is not available is due to a patient not meeting the qualifying requirements in MCA Sch A1. 1 See Commissioner of the Police for the Metropolis v ZH [2012] EWHC 604 (QB) per Sir Robert Nelson at para 44 and Chapter 3: Deciding for Others – Adults at para 3.11.

Proportionality and restraint 5.16 The courts have repeatedly emphasised the need for ‘moderate and reasonable use of restraint’ and that: ‘The lawfulness of such restraint has to be carefully considered when assessing the balance of benefit and disadvantage in the giving of the proposed medical treatment … [whilst recognising the patient’s] right not to be subjected to degrading treatment under Art 3 ECHR.’1 There will be occasions when the degree and extent of the restraint required to achieve a treatment outcome is such that, when the patient’s best interests are considered, it would not be proportionate to apply such restraint over the period in question. As Hale LJ (as she then was) stated in R (Wilkinson) v RMO Broadmoor Hospital, where an incapable person: ‘is actively opposed to a course of action, the benefits which it holds for him will have to be carefully weighed against the disadvantages of going against his wishes, especially if force is required to do this.’2 1 2

Trust A v H (An Adult Patient) [2006] EWHC 1230 (Fam) at para 27. See also In Re A (Refusal of Contraception) [2011] Fam 61 where the court held that in that case, court-imposed contraception through physical coercion would be unacceptable. [2001] EWCA Civ 1545, [2002] 1 WLR 419 at para 64 and see paras 5.1–5.2 above.

5.17 Decisions as to whether the restraint involved in a particular course of treatment for an unwilling, incapable patient is in their best interests are highly fact-specific. The contrasting cases of A Local Authority v E1 and NHS Trust v L2 highlight this principle. Both cases involved a patient with severe and chronic anorexia nervosa. In the first, a forced feeding regime via a nasogastric tube or PEG tube was found to be in the patient’s best interests, while in the latter, it was held that force-feeding under sedation would have been ‘futile, carrying with it a near certainty that it would cause her death in any event’ and was ‘not to be countenanced’3 in the patient’s interests.4 The fact that the consequences of not restraining and treating a patient may include their death will neither alter the need to conduct a careful balancing exercise nor mean that the court will inevitably find the balance to come down in favour of providing treatment.5 1 [2012] EWHC 1639 (COP). 2 [2012] EWHC 2741 (COP). 3 Ibid, para 68. 4 See Chapter 13: Feeding, para 13.25. See also Re in W (Medical Treatment: Anorexia) [2016] EWCOP 13, in which an initial care plan proposed heavy restraint, which would have rendered the patient unconscious for up to six months in order to allow feeding under sedation. The plan had been abandoned by the time the case reached court. Peter Jackson J expressed the view that this was the right decision.

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Restraint and Deprivation of Liberty 5.20 5 See for example Re D (Medical treatment: Mentally Disabled Patient) (1998) 2 FLR 22 in which Sir Stephen Brown granted a declaration that doctors were not required to continue providing kidney dialysis for a 49-year-old man suffering from chronic renal failure and high blood pressure where the patient lacked the mental capacity to consent to or refuse treatment and was forcibly resisting dialysis. Physical restraint in the face of such resistance was not practicable for the period of the dialysis. The patient would have been subject to lengthy periods of general anaesthesia four times each week in order to permit the dialysis to be carried out. Such steps were found to be both ‘impractical and dangerous’; consequently it was determined that giving the proposed restraint and treatment was not in the patient’s best interests.

Restraint and Article 3 ECHR 5.18 Forcible restraint of another, even if falling short of a deprivation of liberty, can engage rights under the European Convention on Human Rights (‘ECHR’),1 particularly the Art 3 right not to be subject to inhuman and degrading treatment. As was pointed out in R (C) v Secretary of State for Justice: ‘We tend to think of obligations under Art 3 in terms of extreme violence, deprivation or humiliation. Convention jurisprudence however makes clear that depending on the circumstances, Art 3 may be engaged by conduct that falls below that high level. Two circumstances that have been identified as imposing special obligations on the state are that the subject is dependent on the state because he has been deprived of his liberty; and that he is young or vulnerable.’2 1 2

For the full text see: www.echr.coe.int/documents/convention_eng.pdf. [2008] EWCA Civ 882 at para 58.

5.19 In Herczegfalvy v Austria1 a mentally ill man who physically resisted being given medication was handcuffed to a bed. He was forcibly administered neuroleptics and he sustained injuries including loss of teeth, broken ribs and bruises. He complained of a violation of his Art 3 ECHR rights. The patient’s challenge failed: the European Court of Human Rights (‘ECtHR’) found that ‘according to the psychiatric principles generally accepted at the time, medical necessity justified the treatment in issue’. Nevertheless, the court stated that: ‘The Court considers that the position of inferiority and powerlessness which is typical of patients confined in psychiatric hospitals calls for increased vigilance in reviewing whether the Convention has been complied with. … such patients nevertheless remain under the protection of Art 3, whose requirements permit of no derogation. The established principles of medicine are admittedly in principle decisive in such cases; as a general rule, a measure which is a therapeutic necessity cannot be regarded as inhuman or degrading. The court must nevertheless satisfy itself that the medical necessity has been convincingly shown to exist.’2 1 2

(1993) 15 EHRR 437. Ibid, para 82.

5.20 This need to show ‘medical necessity’ for restraint was clearly demonstrated in the case of MS v Croatia.1 This case confirms that unnecessary restraint in a hospital setting can amount to a breach of Art 3 ECHR. The complainant had attended an emergency department complaining of back 177

5.20  Restraint and Deprivation of Liberty pain. She was diagnosed with both lower back pain (lumbago) and a number of psychiatric disorders and was admitted to a psychiatric clinic, without her consent. Once there, she was tied to a bed in an isolation room and left for 15 hours overnight. The ECtHR found – following Herczegfalvy – that, while medical standards in psychiatry did allow for recourse to physical restraint, it had to be a last resort, used in order to prevent imminent harm to the patient or others. There was no evidence either that a risk of such harm was present or even that the medical staff believed there was such a risk prior to restraining the complainant. Accordingly, the treatment was a breach of Art 3 ECHR as it amounted to inhuman or degrading treatment. 1

[2015] MHLR 294. See also Bures v Czech Republic 2012 (Application No 37679/08), where the court considered that ill treatment had to attain a minimum level of severity, which will depend on all the circumstances; but that once this threshold has been reached, the restraint can only by justified if made strictly necessary by the patient’s own conduct.

5.21 When considering whether treatment was ‘degrading’ within the meaning of Art 3 of the ECHR, the Strasbourg court will have regard to whether its object was to humiliate and debase the person or whether it was to meet a therapeutic need. For example, requiring a prisoner to wear handcuffs when they are outside the prison and there is reason to believe that they will abscond or cause injury to others will not generally amount to degrading treatment.1 Hence, challenges to the use of restraint with prisoners have, on occasion, been successful only where it has been found on the specific facts of individual cases that the handcuffing of a prisoner while they underwent hospital treatment was not a proportionate response to the identified risk of absconding and violence.2 Each case will be fact-specific and there have also been decisions where the reasonably apprehended risks of escape or violence do justify the restraint of a prisoner during the course of treatment.3 In assessing the nature and extent of restraint used, the national and European courts will be focusing on the proportionality of the restraint when set against the identified and documented risks. In all cases (whether or not the patient has capacity), clinical staff should be reminded to keep a careful note of why a person under their care has been kept handcuffed for some or all of their treatment.4 1 2

Raninen v Finland (1998) EHRR 563 at para 56; and Mouisel v France (2004) 38 EHRR 34. R (Graham) and R (Allen) v Secretary of State for Justice [2007] EWHC 2940 (Admin); see also Uyan v Turkey (Application No 7496/03), 8 January 2009 and Mouisel v France (2004) 38 EHRR 34. 3 R (Faizovas) v Secretary of State for Justice [2008] EWHC 1197 (Admin). 4 See para 5.117 below.

5.22 The principle of proportionality is the paramount consideration in decisions under the MCA, even where Art 3 ECHR rights are not explicitly put in issue. Any restraint will be an interference with the right to bodily integrity under Art 8 of the ECHR. In order for such an interference to be lawful, it will need to be necessary to achieve one of the legitimate aims within Art 8(2) of the ECHR: here the protection of health (or perhaps the protection of the rights of others). If the interference is not proportionate, it is unlikely to be regarded as necessary, and will therefore be unlawful.

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Restraint and Deprivation of Liberty 5.23

Covert medication and deception 5.23 Covert medication is a serious interference with a person’s autonomy and the right to self-determination under Art 8. There are no special principles which apply when covert medication is under consideration: the use of such medication is an intervention that should be considered through the ‘best interests’ framework of the MCA, like any other intervention proposed for a patient who lacks capacity.1 It is the same when deception is under consideration. The case of University Hospitals of Derby and Burton NHS Foundation Trust v J2 concerned the proposed medical treatment of a young woman with severe learning disability, in which a sedative would be injected which she would believe to be her usual three-monthly hormone injection. Williams J referred to a line of case-law confirming that the use of deception could be ‘compliant with the individual’s Article 8 rights provided the best interests exercise has been carried out’.3 Similarly in P (Sexual Relations and Contraception)4 in which Baker J considered whether it was in P’s best interests to retain an IUD which had been inserted covertly. He said: ‘The covert provision of medication to an incapacitated adult is always an interference with personal autonomy and thus a very significant step. The covert insertion of a contraceptive IUD is, arguably, an even more serious interference with an individual’s personal autonomy and Article 8 rights …. Given the serious infringement of rights involved in the covert insertion of a contraceptive device, it is in my judgement highly probable that, in most, if not all, cases, professionals faced with a decision whether to take that step will conclude that it is appropriate to apply to the court to facilitate a comprehensive analysis of best interests, with P having the benefit of legal representation and independent expert advice.’5 Where covert medication or other forms of deception are proposed, the court will require evidence as to whether the deception is to be permanent, and if not, how P will be informed and what psychological impact that will have. This will be particularly significant if discovery of a deception may impact negatively on their relationship with those treating them in the longer term. 1 The case often cited in relation to covert medication is Re AG [2016] EWCOP 37, a first instance decision of DJ Bellamy in which he set out at para 43 some pointers about covert medication and standard authorisations for persons subject to covert medication, by way of ‘future guidance’. Some caution is needed in interpreting the decision, as the parties in the case all ‘agreed that covert medicines should only be used in exceptional circumstances’. In fact, NICE guidelines (which were referred to in AG) do not impose any threshold of exceptionality before covert medication can be administered: rather, they refer to the need for a mental capacity assessment and a best interests decision-making process. In other words, they refer to the framework of the MCA. See both the NICE guideline ‘Managing Medicines in Care Homes (2014)’ at www.nice.org.uk/guidance/sc1 and the ‘Quick Guide’ published at bit.ly/NICE-covert-med. See further the Care Quality Commission’s guidance on covert medication at bit.ly/CQC-covert-med. 2 [2019] EWCOP 16. 3 At para 34. See also M v ABM University Health Board [2018] UKUT 120 (AAC). 4 [2018] EWCOP 10. The IUD had been inserted under general anaesthetic following the decision of Parker J (no judgment being available). 5 Ibid, para 56.

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5.24  Restraint and Deprivation of Liberty

C  DEPRIVATION OF LIBERTY Background: ‘the Bournewood gap’ 5.24 Until the decision in HL v UK1 (‘the Bournewood case’), it was accepted practice in psychiatric hospitals to informally admit those incapable patients who did not indicate any objection to their admission or treatment: that is, to admit and treat them without placing them on a section of the MHA. Formal powers of detention under the MHA were usually invoked only if an incapable patient refused or resisted the admission or treatment, or if they tried to leave the hospital once admitted. In HL the ECtHR found that the admission of an incapable but non-resistant man to a psychiatric in-patient unit constituted a violation of his right to liberty under Art 5 of the ECHR. Although he had been admitted to hospital to provide him with treatment for his mental disorder, HL had not been formally detained under the MHA but had remained a ‘voluntary’ patient under s 131 of the MHA throughout his admission. 1

(2005) 40 EHRR 32.

5.25 Article 5(1) of the ECHR permits the detention of those of ‘unsound mind’. However, Art 5(1) of the ECHR states that ‘no one shall be deprived of his liberty save … in accordance with a procedure prescribed by law’ and hence a legal process for the detention must be followed if a state is to protect its citizens from an arbitrary deprivation of liberty. Further, in stating that ‘everyone who is deprived of his liberty … shall be entitled to take proceedings by which the lawfulness of his detention shall be decided speedily by a court and his release ordered if his detention is not lawful’, Art 5(4) ECHR requires the state to provide a procedure by which any deprivation of liberty may be speedily reviewed and challenged. As HL was held ‘informally’ and not detained under MHA, he had none of these legal protections in place. 5.26 Before petitioning Strasbourg, HL had challenged his detention through the national courts, claiming that he had been falsely imprisoned. However, the House of Lords had found (by a majority) that HL was not ‘detained’.1 Further, even if he was detained, his admission to hospital was lawful, being justified under the common law doctrine of necessity. His false imprisonment claim therefore failed. In contrast, the ECtHR found that HL had been ‘deprived of his liberty’ within the meaning of Art 5 of the ECHR and that the absence of any procedural rules governing the hospital admission of informal, incapable patients violated his Art 5 procedural rights. 1

R (L) v Bournewood Community and Mental Health NHS Trust [1998] UKHL 24.

5.27 This lacuna in national law (the ‘Bournewood gap’) arose because the law contained no Art 5 EHCR compliant procedural protections for patients who lacked capacity but were not actively resisting detention. It could not be solved by formally detaining all incapable patients under the MHA, since many incapable but non-resistant patients would not meet the criteria for detention under s 2 or s 3 of the MHA; further, a large number of people lacking capacity reside outside psychiatric institutions in care homes in the community, where they are not being treated for any mental disorder.

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Restraint and Deprivation of Liberty 5.29 The government needed to provide a procedure to authorise the deprivation of liberty in situations where the MHA could not be invoked. This was achieved by amending the MCA. 5.28 In April 2009 the amendments came into force. The structure and effect of these amendments to the MCA created three alternative routes to the authorisation of a deprivation of liberty: ●●

●●

●●

The first is the administrative process, the ‘Hospital and Care Home Residents: Deprivation of Liberty’ procedures1 (more commonly known as the Deprivation of Liberty Safeguards or ‘DOLS’). These procedures are found in MCA Sch A1. Under this process the managing authority for the hospital, care home or care regime seeks authorisation from the supervisory body (the local authority) for the deprivation of liberty of an incapable person in its care. Where such authorisation is properly granted, s 4A(5) provides that the deprivation of liberty is lawful. There is a route of appeal to the Court of Protection. The second is through the authorisation of the Court of Protection under a personal welfare order, pursuant to MCA s 16(2)(a); MCA s 4A(3)–(4) provides that a person D may deprive the person P of their liberty if by doing so D is giving effect to a s 16(2)(a) decision of the court. These powers are primarily to be used in cases where the administrative process does not apply. Third, under MCA s 4B, where it is necessary to give life-sustaining or vital treatment and there is a question about whether there is authorisation for the deprivation of liberty (MCA s 4B) which has been referred to the Court of Protection.

Some patients will be ineligible for authorisation of their deprivation of liberty under the MCA.2 The ineligibility criteria in Sch 1A to the MCA are difficult to understand and apply. If ineligible, either the MHA will have to be used, or authorisation sought under the inherent jurisdiction of the High Court. The key starting point is whether the circumstances in which the patient is being kept will amount to a deprivation of liberty. 1

The standard forms and guidance for health and care professionals tasked with authorising the deprivation of liberty of an incapacitated person can be found at: http://bit.ly/29UnhSg. 2 See paras 5.93–5.101 below.

What is a ‘deprivation of liberty’? Cheshire West 5.29 The key case when considering whether or not there is (or may be) a deprivation of liberty is the decision of the Supreme Court in P v Cheshire West and Chester Council; P and Q v Surrey County Council.1 These two cases, which were heard and decided together, are widely referred to as Cheshire West. Paragraphs 5.53–5.54 below address the impact of Cheshire West. It is helpful to understand the context and events leading up to that decision, which are summarised below. 1

[2014] UKSC 19, [2014] 1 AC 896.

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5.30  Restraint and Deprivation of Liberty

The position prior to the Supreme Court decision in Cheshire West 5.30 In the Bournewood case the ECtHR stated that in determining whether there is a deprivation of liberty, ‘the starting point must be the specific situation of the individual concerned and account must be taken of a whole range of factors arising in a particular case such as the type, duration, effects and manner of implementation of the measure in question.’1 MCA s 64(5) states that, ‘references to deprivation of a person’s liberty have the same meaning as in Art 5(1) of the Human Rights Convention.’ While this emphasises that relevant case law on what constitutes a deprivation of liberty will include decisions of the ECtHR, it does nothing to assist in understanding what a deprivation of liberty might actually look like. Neither did the amendments introduced to the MCA following the decision in Bournewood include a definition of a ‘deprivation of liberty’.2 As a result, in the years following the amendments to the MCA and the introduction of the DOLS regime, there was considerable uncertainty about what, in practice, might amount to a deprivation of liberty. 1 2

HL v UK (2005) 40 EHRR 32 at para 89. Nor is there any statutory definition of ‘deprivation of liberty’ within the MC(A)A.

5.31 The Code of Practice to supplement the DOLS was published in August 2008.1 At para 2.5 it provided a list of ‘non-exhaustive factors’ that might suggest a person was deprived of their liberty: ●● ●● ●● ●● ●● ●● ●●

‘Restraint is used, including sedation, to admit a person to an institution where that person is resisting admission. Staff exercise complete and effective control over the care and movement of a person for a significant period. Staff exercise control over assessments, treatment, contacts and residence. A decision has been taken by the institution that the person will not be released into the care of others, or permitted to live elsewhere, unless the staff in the institution consider it appropriate. A request by carers for a person to be discharged to their care is refused. The person is unable to maintain social contacts because of restrictions placed on their access to other people. The person loses autonomy because they are under continuous supervision and control.’

As can be immediately seen, this is a list of examples, rather than any guide as to what the underlying principles may be in determining whether there is a deprivation of liberty. 1 See bit.ly/DoH-archive-Code. Note that at the time of publication of this edition, the DOLS Code of Practice has been acknowledged to be out of date by the government in their response to the Law Commission’s review of DOLS: see government summary response document at bit.ly/DoLS-resp.

The ECtHR definition 5.32 The classic statement of the law is in Storck v Germany,1 where the ECtHR considered that three elements were required to constitute a ‘deprivation of liberty’ in Art 5 terms: ●●

an objective element of a person’s confinement in a defined space for a not negligible period of time; 182

Restraint and Deprivation of Liberty 5.34 ●● ●●

a subjective element, namely that the person has not validly consented to the confinement (and where the person lacks capacity to consent it cannot be inferred by a lack of objection); that the deprivation of liberty is imputable to the state.

In the 2007 decision of JE v DE and Surrey CC,2 Munby J agreed with this formulation and went on to observe that: ‘The fundamental issue … is whether DE was deprived of his liberty to leave the X home and whether DE has been and is deprived of his liberty to leave the Y home. And when I refer to leaving the X home and the Y home, I do not mean leaving for the purpose of some trip or outing approved by SCC or by those managing the institution; I mean leaving in the sense of removing himself permanently in order to live where and with whom he chooses … ‘… DE was not and is not “free to leave”, and was and is, in that sense, completely under the control of SCC, because … it was and is SCC who decides the essential matters of where DE can live, whether he can leave and whether he can be with JE.’3 1 2 3

(2006) 43 EHRR 6 at paras 74 and 89. [2006] EWHC 3459 (Fam) at para 77. Ibid, paras 115 and 117.

5.33 Despite progress being made towards identifying the key features of a deprivation of liberty in the DE case, there remained considerable difference in the approaches, both between cases and even in the same case, between the High Court and the Court of Appeal. In particular, there was a line of authority stating that restrictions on movement outside the institutional context which were designed principally for the benefit of the individual, might not amount to a deprivation of liberty.1 Similarly, in Secretary of State for the Home Dept v JJ Baroness Hale had suggested that in determining whether there has been a deprivation of liberty one can consider the effect of measures on the life the person would be otherwise living and that restrictions designed for the benefit of the person concerned are less likely to breach Art 5 of the ECHR than restrictions designed for the protection of society.2 However, it had been observed (including by several judges) that if the only or predominant determinant of a deprivation of liberty was the purpose of the measures imposed, then very few cases of restriction of movement in the health and welfare setting could be found to be a deprivation of liberty. The DOLS provisions would be invoked only rarely, particularly outside an institutional setting. 1 2

R (Secretary of State for Home Dept) v Mental Health Review Tribunal [2002] EWCA Civ 1868, [2003] MHLR 202. [2007] UKHL 45, [2008] 1 AC 385 at 423 at para 58.

5.34 It was in this context of this considerable uncertainty, and lack of consistency over what constituted a deprivation of liberty, that the Supreme Court considered the cases of MIG and MEG and of P in Cheshire West.

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5.35  Restraint and Deprivation of Liberty

The decision in Cheshire West The facts in MIG and MEG 5.35 MIG (identified as ‘P’ in the Court of Appeal decision) and MEG (‘Q’ in the Court of Appeal) were sisters who first became the subject of care proceedings under the Children Act 1989 in 2007. MIG had a learning disability at the lower end of the moderate range or the upper end of the severe range. She had limited understanding, problems with sight and hearing, communicated with difficulty and spent much of her time listening to music on her iPod. She needed help crossing the road because she was unaware of danger. MEG had a learning disability at the upper end of the moderate range, bordering on the mild. Her communication skills were better than her sister’s and her emotional understanding was quite sophisticated. Until 2007 the sisters lived with their mother and stepfather. They were illtreated and neglected, and were removed from the family home after siblings made allegations of sexual abuse against their parents, who were subsequently convicted of the rape and indecent assault of their half-sister. 5.36 By the time of the final hearing before the Court of Protection in 2010, MIG was aged 18. She was living with a foster mother, to whom she was devoted, and who provided her with intensive support in most aspects of daily living. MIG had never attempted to leave the home by herself and showed no wish to do so, but if she had done, her foster mother would have restrained her. She attended a further education unit daily during term time and was taken on trips and holidays by her foster mother. She was not on any medication. MEG was aged 17. She had originally been placed with a foster carer, who was unable to manage her severe aggressive outbursts, and so she was moved to an NHS residential facility for learning disabled adolescents with complex needs. MEG had occasional outbursts of challenging behaviour towards other residents and sometimes required physical restraint. She was also receiving tranquillising medication. Her care needs were met only as a result of continuous supervision and control. She also showed no wish to go out on her own and so did not need to be prevented from doing so, being accompanied by staff whenever she left. She attended the same further education unit as MIG and had a much fuller social life than her sister. 5.37 Parker J decided that the sisters’ living arrangements were in their best interests and concluded that they did not amount to a deprivation of liberty.1 The Court of Appeal agreed:2 ●●

●● ●● 1 2 3

Wilson LJ, laid stress on the ‘relative normality’ of the sisters’ lives, compared with the lives they might have at home with their family, together with the absence of any objection to their present accommodation.3 Smith LJ thought their previous arrangements were not relevant, but stressed that: ‘What may be a deprivation of liberty for one person may not be for another’.4 Mummery LJ was also impressed with the ‘greater fulfilment in an environment more free than they had previously had.’5 Re MIG and MEG [2010] EWHC 785 (Fam), [2011] Fam Law 29. P & Q v Surrey CC [2011] EWCA Civ 190, [2012] Fam 170. Ibid, para 28.

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Restraint and Deprivation of Liberty 5.39 4 5

Ibid, para 52. Ibid, para 40.

The facts in P v Cheshire West 5.38 P was aged 38 at the time of the Court of Protection hearing. He was born with cerebral palsy and Down’s syndrome and required 24-hour care to meet his personal care needs. Until he was 37 he had lived with his mother, who was also his principal carer. As her health began to deteriorate, the local authority concluded that she was no longer able to look after P. In 2009 the Court of Protection declared that it was in P’s best interests to live in accommodation arranged by the local authority. Since November 2009, he had been living in Z House. It was a spacious bungalow, cosy, with a pleasant atmosphere, and close to P’s family home. At the time of the final hearing, he shared it with two other residents. P received 98 hours one-to-one support each week, to help him to leave the house whenever he chose. He went to a day centre four days a week and a hydrotherapy pool on the fifth. He also went out to a club, the pub and the shops, and saw his mother regularly at the house, the day centre and her home. P could walk short distances but needed a wheelchair to go further. He required prompting and help with all the activities of daily living, including getting about, eating, personal hygiene and continence. Because of his history of pulling at continence pads and putting pieces in his mouth, he wore a ‘body suit’ of all-in-one underwear which prevented him getting at the pads. Carers would need to insert their fingers in his mouth, while he was under restraint, in order to remove pieces of pad. Intervention was also needed to cope with other challenging behaviours, but he was not receiving tranquillising medication. 5.39 At the final hearing before Baker J in April 2011, the principal issue was whether these arrangements amounted to a deprivation of liberty. Baker J held that P was completely under the control of the staff at Z House, that he could not, ‘go anywhere or do anything without their support and assistance.’1 Further, ‘the steps required to deal with his challenging behaviour lead to a clear conclusion that, looked at overall, P is being deprived of his liberty.’2 Nevertheless it was in his best interests for those arrangements to continue. The Court of Appeal substituted a declaration that the arrangements did not involve a deprivation of liberty.3 Giving the lead judgment of the Court, Munby LJ identified 12 features which, when all taken into account, led the Court of Appeal to this conclusion. In doing so, the court developed the concept of ‘relative normality’ previously adopted in MIG and MEG. It compared P’s life, not with that which he had enjoyed before when living with his mother, but with that which other people like him, with his disabilities and difficulties, might normally expect to lead. In summary, Lloyd LJ observed: ‘It is meaningless to look at the circumstances of P in the present case and to compare them with those of a man of the same age but of unimpaired health and capacity … the right comparison is with another person of the same age and characteristics as P.’4 1 2 3 4

Cheshire West and Chester Council v P [2011] EWCOP 1330 at para 59. Ibid, para 60. Cheshire West and Chester Council v P [2011] EWCA Civ 1257, [2012] PTSR 1447. Ibid, para 120.

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5.40  Restraint and Deprivation of Liberty

The reasoning in Cheshire West 5.40 The Supreme Court decided that the appeals should both be allowed, and that declarations should be granted that P, MIG and MEG were all to be regarded as deprived of their liberty. This was not a decision that the Supreme Court found easy, as is demonstrated by the narrow majority of 4:3 by which the appeal was decided. 5.41 A fundamental feature of the reasoning of each of the judges in the majority was that the test as to whether there has been a deprivation of liberty must be an objective one. The subjective views of the individual are not relevant, as the issue only arises for consideration if it has already been determined that the person does not have capacity to consent. The issue of whether the person does or does not consent to the conditions under which they live may be highly relevant at a later stage when the ‘best interests’ test is being considered for the purposes of authorising a deprivation of liberty. However, the majority were clear that it would be wrong to include these considerations at the earlier stage of identifying whether or not there was a deprivation of liberty at all. Lord Neuberger stated, ‘I consider that it would be inappropriate to hold that, if certain conditions amounted to a deprivation of liberty in the case of a person who had the capacity to object and did object, they may, or – even worse – would, not do so in the cases of a person who lacked the capacity to object.’1 1

P v Cheshire West and Chester Council [2014] UKSC 19, [2014] 1 AC 896, at para 67.

5.42 A second key element of the majority’s reasoning was that the purpose of the conditions imposed on an incapable person’s living arrangements was not relevant to deciding whether or not there was a deprivation of liberty. The majority relied on the views of the ECtHR in Austin v UK: ‘an underlying public interest motive … has no bearing on the question whether [the] person has been deprived of his liberty, although it might be relevant to the subsequent inquiry whether the deprivation of liberty was justified under one of the sub-paragraphs of Art 5.1 …’1 1

(2012) 55 EHRR 14 at para 58. See [2014] UKSC 19, [2014] 1 AC 896 at paras 50 and 66.

5.43 A third key element of the majority’s reasoning was that the ‘relative normality’ of the person’s domestic circumstances is not to be taken into account in deciding whether or not a deprivation of liberty is established.1 Although MIG and MEG lived lives that were as close to normality as possible, the fundamental difference was that they were not free to leave. Whether or not they actually chose to leave was not relevant to this part of the exercise. 1

[2014] UKSC 19, [2014] 1 AC 896; see paras 47, 50 and 51.

5.44 Fourthly, the fact that the regime had been identified as being in the person’s best interests, was irrelevant, and indeed incorporated an element of circularity into the exercise. If a regime was entirely appropriate, it could still be a deprivation, and vice versa. Lord Neuberger concluded: ‘It is to set the cart before the horse to decide that because they do indeed lack capacity and the best possible arrangements have been made, they are not in need of those safeguards … In the end, it is the constraints that matter.’1 1

[2014] UKSC 19, [2014] 1 AC 896 at para 56.

186

Restraint and Deprivation of Liberty 5.48

Identifying a deprivation of liberty: ‘a gilded cage is still a cage’ 5.45 Having rejected a number of factors as not relevant to the question of whether there was a deprivation of liberty, the majority were clear that, as far as practicable, the court ought to assist in identifying a straightforward test that would assist people on the ground in identifying a deprivation of liberty, or a potential deprivation. 5.46 ●●

whether the concept of physical liberty protected by Art 5 is the same for everyone, regardless of whether or not they are mentally or physically disabled;1 and what is the essential character of a deprivation of liberty?2

●● 1 2

Baroness Hale identified two key questions, namely:

[2014] UKSC 19, [2014] 1 AC 896 at para 33. Ibid, para 37.

5.47

Baroness Hale regarded the first of these questions as straightforward:

‘In my view, it is axiomatic that people with disabilities, both mental and physical, have the same human rights as the rest of the human race. It may be that those rights have sometimes to be limited or restricted because of their disabilities, but the starting point should be the same as that for everyone else.’1 This may be an uncontroversial observation in itself, but it leads to a conclusion by the majority that many people (lawyers and laypersons alike) might find surprising in terms of the restrictions placed on an incapable person’s life for the purposes of keeping them safe, and maximising their engagement with friends, relatives and society. For Baroness Hale, developing this theme, went on to state: ‘… If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person. The fact that my living arrangements are comfortable, and indeed make my life as enjoyable as it could possibly be, should make no difference. A gilded cage is still a cage.’2 1 2

[2014] UKSC 19, [2014] 1 AC 896 at para 45. Ibid, para 46.

5.48 On the second question, Baroness Hale considered whether there might be an ‘acid test’ that identified the key features of a deprivation of liberty in this context. She identified two such features, said to be a consistent theme throughout the jurisprudence of the ECtHR since the decision of HL, namely that the person concerned ‘was under continuous supervision and control and was not free to leave’. Baroness Hale went on to reject the idea that supervision and control might be relevant only insofar as it demonstrates that the person is not free to leave. She specifically rejected the idea that the ‘continuous supervision and control’ and ‘not free to leave’ tests might not be answered differently in an individual case. In confirming that the features needed to be considered separately, and both needed to be present she stated, ‘it is possible to imagine situations in which 187

5.48  Restraint and Deprivation of Liberty a person is not free to leave but is not under such continuous supervision and control as to lead to the conclusion that he was deprived of his liberty.’1 1

[2014] UKSC 19, [2014] 1 AC 896 at para 49.

5.49 The other judges in the majority agreed with this approach, Lord Neuberger stating: ‘I consider that the Strasbourg court decisions do indicate that the twin features of continuous supervision and control and lack of freedom to leave are the essential ingredients of deprivation of liberty (in addition to the area and period of confinement).’1 1

[2014] UKSC 19, [2014] 1 AC 896 at para 63.

5.50 The majority accepted that similar constraints would not necessarily amount to a deprivation of liberty if imposed by parents in the exercise of their ordinary parental responsibilities and outside the legal framework governing state intervention in the lives of children or people who lack the capacity to make their own decisions.1 It was accepted neither MIG nor MEG could survive without this level of supervision and control, but to rely on this as a reason to find them not deprived of their liberty would be ‘to resurrect the comparison with other people sharing their disabilities and to deny them the same concept of liberty as everyone else.’2 1 2

[2014] UKSC 19, [2014] 1 AC 896 at para 54, although note the subsequent decisions in Trust A v X and A Local Authority [2015] EWHC 922 (Fam) and Re D (A Child) [2019] UKSC 42, [2019] 1 WLR 5403, discussed at PARA 5.71–5.72 below. Ibid, para 55.

5.51 The majority in the Supreme Court explicitly recognised that public policy in relation to the detention of the incapable ought to play a role in the threshold at which a person’s circumstances might be regarded as amounting to a deprivation of liberty: ‘Because of the extreme vulnerability of people like P, MIG and MEG, I believe that we should err on the side of caution in deciding what constitutes a deprivation of liberty in their case. They need a periodic independent check on whether the arrangements made for them are in their best interests. Such checks need not be as elaborate as those currently provided for in the Court of Protection or in the deprivation of liberty safeguards (which could in due course be simplified and extended to placements outside hospitals and care homes).’1 1

[2014] UKSC 19, [2014] 1 AC 896 at para 57.

The acid test 5.52 The judgment of the majority in Cheshire West therefore identifies (although they perhaps do not unambiguously accept), an ‘acid test’ for recognising a deprivation of liberty for the purposes of Art 5 of the ECHR. This acid test is satisfied if a person who lacks the capacity to consent to their care/ treatment arrangements: ●● ●● 1

is under continuous supervision and control; and is not free to leave.1 [2014] UKSC 19, [2014] 1 AC 896 at para 49.

188

Restraint and Deprivation of Liberty 5.54

The impact of the decision in Cheshire West 5.53 The dissenting judgments in Cheshire West were mindful of the impact of (in effect) widening the scope of what might be a deprivation of liberty. Lord Carnwath and Lord Hodge stated that, in the absence of a clear ruling from the ECtHR: ‘we should be cautious about extending a concept as sensitive as “deprivation of liberty” beyond the meaning which it would be regarded as having in ordinary usage.’1 All judges of the Supreme Court accepted that there might be legitimate concerns about the potential bureaucracy of the statutory procedures, and about including within the test: ‘the sort of benevolent living arrangements which many might find difficult to characterise as a deprivation of liberty.’2 1 2

At para 93. At para 10. See further the decision in Re AEL [2021] EWCOP 9, discussed at paras 5.57 and 5.83 below, in which the court had to determine whether a young woman’s living arrangements at home amounted to a deprivation of liberty, something her parents found it impossible to accept.

5.54

These concerns have indeed come to the fore.

One of the problems arising from the decision was that, at the time, there was no system of checks to ensure the periodic review of the arrangements made for incapacitous people which was simpler and less onerous than the DOLS procedure.1 The rise in bureaucracy relating to DOLS probably exceeded even the fears of the minority of the Supreme Court in Cheshire West. On 12 November 2020 NHS Digital published the statistics for DOLS data collection for the period from 1 April 2019 to 31 March 2020.2 During this period there were 263,940 applications relating to 216,980 people: the number of applications has increased by an average of 13.9% each year since 2014–15. Moreover, the proportion of standard applications completed within the statutory timeframe of 21 days was just 23.6% and the average length of time for all completed applications was 142 days. The resourcing problems for local authorities caused by the increase in applications can hardly be exaggerated. This resourcing problem, both financially and practically, is even more acute in relation to applications to the Court of Protection, and is most apparent in relation to the controversial issue of when a person needs to be represented in Court of Protection proceedings. In terms of sheer numbers, most of this increase is in relation to domiciliary arrangements for care rather than medical treatment. The Law Commission subsequently commenced a project to review the MCA and DOLS. On 13 March 2017 it published a report and a draft Bill which recommended repealing the DOLS and replacing them with the LPS.2 The Government at the time welcomed the Law Commission’s report and on 14 March 2018 published its final response which agreed that the DOLS should be replaced and that it broadly agreed with the Law Commission’s LPS model.3 As stated above, the MC(A)A received Royal Assent on 16 May 2019 but it is not in force at the time of writing.4 189

5.54  Restraint and Deprivation of Liberty 1 See para 5.88 below. 2 See www.lawcom.gov.uk/project/mental-capacity-and-deprivation-of-liberty/. 3 Final Government Response to the Law Commission’s review of Deprivation of Liberty Safeguards and Mental Capacity, ministerial statement of Caroline Dineage MP, Minister of State for Health, see bit.ly/DoLs-St-14-Mar-18. 4 See para 5.3 above.

Identifying a potential deprivation of liberty in the hospital context 5.55 A key concern for healthcare providers following Cheshire West is to ensure that they correctly identify, or anticipate, all potential deprivations of liberty. This is so that consideration is given both to less intrusive (i.e. more proportionate) alternatives to a regime that leads to a deprivation of liberty, or where such a lesser set of measures would be inappropriate or ineffective, the need to seek authorisation is identified in advance. 5.56 The original DOLS Code of Practice was issued in August 2008 and has not been updated. It still applies, but must be read in light of the decision in Cheshire West and some of the cases that have followed it. Following Cheshire West the Department of Health commissioned the Law Society to produce a guidance document to assist practitioners. The result is ‘Deprivation of liberty: a practical guide’.1 This is a detailed document, several parts of which are of direct relevance to deprivation of liberty for the purposes of providing medical treatment. It ought to be treated as a supplement to the Code of Practice, rather than replacing it. 1

See bit.ly/LSoc-DoL-Sep-19. A further useful resource for identifying a deprivation of liberty in hospital is the 39 Essex discussion paper, updated November 2019, at bit.ly/39EC-DoLNov-19.

5.57 The obligation to ensure that any deprivation of liberty is authorised applies to patients detained in both NHS and private hospitals. Paragraph 1.21 of the Code of Practice states: ‘Under the Human Rights Act 1998, the duty to act in accordance with the ECHR applies only to public authorities. However, all states that have signed up to the ECHR are obliged to make sure that the rights set out in the ECHR apply to all of their citizens. The Mental Capacity Act 2005 therefore makes it clear that the deprivation of liberty safeguards apply to both publicly and privately arranged care or treatment.’1 It also applies to patients detained in their homes where the deprivation is imputable to the state. In Re A and Re C Munby LJ held that: ‘Where the State – here, a local authority – knows or ought to know that a vulnerable child or adult is subject to restrictions on their liberty by a private individual that arguably give rise to a deprivation of liberty, then its positive obligations under Article 5 will be triggered.’2 Munby LJ went on to consider what this obligation would mean for the local authority. Ultimately it may extend to seeking a declaration under the court’s inherent jurisdiction that the deprivation of liberty is lawful, as the DOLS scheme in Sch A1 is not available.

190

Restraint and Deprivation of Liberty 5.60 In Re AEL,3 the local authority asked the court to determine whether or not AEL’s living arrangements at home amounted to a deprivation of liberty, in the context of fierce and long-standing opposition from her parents, who vigorously denied it. The court concluded that AEL was deprived of her liberty, and stated that the requirement for this to be regularly reviewed by the court was not in order to stigmatise AEL or her loving family, but to ‘ensure recognition of her equal dignity and status as a human being’. Those responsible for the deprivation of liberty may be liable in damages for false imprisonment or breach of Art 5 of the ECHR if they have failed to secure authorisation.4 1 2 3 4

See MCA, ss 64(5) and 64(6) as amended. [2010] EWHC 978 (Fam) at para 95. [2021] EWCOP 9. Detailed consideration of the legal remedies available where there has been an unlawful deprivation of liberty is beyond the scope of this book. The damages and legal costs may be considerable.

5.58 Hospitals must be particularly careful when dealing with patients who are, or arguably ought to be, subject to the regime under the MHA. This is the case whether or not the patient is being admitted directly from a mental hospital where they would otherwise be subject to detention under the MHA. It will still be necessary to consider whether the circumstances in which physical treatment is to be provided will give rise to a deprivation of liberty. Where such a deprivation of liberty is anticipated, further consideration must be given to (1) whether the patient is ineligible to be detained under the MCA, and if eligible, (2) which regime is more appropriate to cover authorisation. These questions of eligibility and suitability of the two regimes are considered in more detail below at paras 5.93–5.104.

Place and duration of the patient’s stay 5.59 The location within a hospital where a patient is located will not necessarily be relevant. The patient certainly does not need to be on a locked ward. It is the circumstances of the individual patient’s confinement that are relevant. If an incapable patient is under continuous supervision by ward staff, and would not be free to leave the hospital (for example, if their relatives wished to take them home) then it may be that the key elements of the acid test are met. 5.60 Neither is the duration of confinement a deciding factor. All that is required is that, in the circumstances, the confinement be for a ‘non-negligible’ period of time.1 In ZH v Commissioner of Police of the Metropolis, the claimant was an autistic teenager who, due to a catalogue of mishaps, was forcibly restrained by a number of police officers for a period of 40 minutes. It was held by the Court of Appeal that, given the ‘intensity of restraint’, this was a sufficient length of time to constitute a deprivation of liberty.2 In very different circumstances, the confinement in a mental health assessment suite for a period of eight hours while arrangements were made for an application to be made under the MHA has been found to be ‘unlikely’ to amount to a deprivation of liberty.3 This, however, should be contrasted with

191

5.60  Restraint and Deprivation of Liberty Aftanache v Romania4 where the ECtHR considered a six-hour involuntary confinement in hospital to be a deprivation of liberty, saying: ‘there was an element of coercion which, notwithstanding the relatively short duration of the events, that is about six hours (see paragraph 19 above), was indicative of a deprivation of liberty within the meaning of Article 5 § 1.’5 1 See Cheshire West at para 20. 2 [2013] EWCA Civ 69, [2013] 1 WLR 3021. 3 Sessay v South London & Maudsley NHS Foundation Trust & The Commissioner of Police for the Metropolis [2011] EWHC 2617 (QB). 4 [2020] ECHR 339. 5 Ibid, para 82.

Deprivation of liberty for serious medical treatment: NHS Trust v FG 5.61 A key case in understanding the approach the court is likely to take to the deprivation of liberty in the context of serious medical treatment is Re FG.1 The context was the delivery of obstetric care, but many of the observations are directly applicable to acute care in other situations in hospitals. 1

[2014] EWCOP 30, [2014] WLR (D) 384.

5.62 FG was a woman in the late stages of pregnancy. She suffered from a schizoaffective disorder and was a patient in a psychiatric hospital, detained under the MHA. She lacked insight into her mental illness and thus did not believe she required treatment for the illness. She had been refusing to take any medication, resulting in a further decline in her mental state. She suffered from persecutory delusions including a belief that mental health services were ‘murderers’ and would murder her and her unborn child. She was assessed as lacking capacity to make decisions about medical intervention relating to her pregnancy/delivery, or to conduct litigation.1 The psychiatric hospital and the hospital where the anticipated maternity unit was located sought orders authorising the transfer of FG to the maternity unit and for such obstetric, midwifery and anaesthetic care in the maternity unit as appropriate in the clinical judgment of those caring for her. Authorisation for any deprivation of liberty as might be necessary for such treatment to be carried out was sought, both under MCA s 16(2)(a) or under the court’s inherent jurisdiction. 1

[2014] EWCOP 30 at paras 51–52.

5.63 The court granted the orders and authorisations sought. In doing so it considered the anticipated circumstances of treatment during labour, in the event that FG was non-compliant. The court tackled directly the question of whether the restraint that might be required would go beyond that permitted under MCA s 6, and constitute a deprivation of liberty.1 Having identified the ‘acid test’ from Cheshire West, the court made the following important findings: ‘It will commonly be the case that when at the acute hospital P: (i) will have obstetric and midwifery staff constantly present throughout her labour and delivery; 192

Restraint and Deprivation of Liberty 5.65 (ii) will be under the continuous control of obstetric and midwifery staff who, because she lacks capacity to make decisions about her medical case, will take decisions on her behalf in her best interests; (iii) will often not be permitted to leave the delivery suite. ‘Those factors may, when applying the acid test, lead to a conclusion that P is or will suffer a deprivation of her liberty when at the acute hospital. If the Trusts are to deprive P of her liberty, they have a duty not to do so unlawfully: s 6 HRA 1998. ‘The Trusts must, therefore, plan how P is to receive obstetric care in sufficient detail to identify whether there is potential for a deprivation of liberty to arise. When trusts identify there is a real risk that P will suffer an additional deprivation of her residual liberty during transfer to and from the acute hospital and/or when present at the acute hospital, the Trusts must take steps to ensure the deprivation of liberty is authorised in accordance with the law.’2 In relation to the term ‘real risk’, the court agreed with and adopted the interpretation of Charles J in AM v South London v Maudsley NHS Foundation3 that this meant, ‘judged objectively there is a risk that cannot sensibly be ignored that the relevant circumstances amount to a deprivation of liberty.’4 1 2 3 4

[2014] EWCOP 30 at paras 92–93. Ibid, paras 96–97. [2013] UKUT 365 (AAC). Ibid, para 59.

5.64 ●● ●● ●● ●●

The court noted that:1 a mental health patient enjoys all of the fundamental rights and freedoms guaranteed under the ECHR save to the extent that her liberty is restricted pursuant to the MHA; restraint or measures to facilitate P’s obstetric care which amount to a deprivation of liberty would interfere with her rights under Arts 3, 5 and 8 of the ECHR unless authorised in accordance with the law; total restraint for very short periods may amount to a deprivation of liberty;2 and P’s lack of objection to obstetric care or any restraint used to facilitate it would be irrelevant in determining whether the actions amount to a deprivation of liberty.3

The court considered that restraint within the maternity unit for a substantial period of time (perhaps hours) was likely to constitute a deprivation of liberty. This is a very important observation for the delivery of medical treatment to an acutely unwell, incapable patient in other areas of medicine. 1 2 3

[2014] EWCOP 30 at para 99. ZH v Commissioner of the Police for the Metropolis [2013] EWCA Civ 69, [2013] 1 WLR 3021. P v Cheshire West (above), para 50.

5.65 Similarly, there were a number of features of FG’s case that led the court to conclude that, where a pregnant woman did not have capacity to consent to the medical treatment likely to be involved during labour, it may

193

5.65  Restraint and Deprivation of Liberty be necessary to seek the court’s authorisation rather than to obtain a DOLS authorisation. A number of overlapping scenarios were anticipated:1 ●●

●● ●●

●●

The interventions proposed by the Trust(s) probably amounted to ‘serious medical treatment’,2 irrespective of whether it was contemplated that the obstetric treatment would otherwise be provided under the MCA or MHA. It was held that the court’s authorisation should be sought where potential delivery by caesarean section was proposed in circumstances where the merits of that proposal were finely balanced and/or were likely to involve more than transient forcible restraint of P. There was a real risk that P would be subject to more than transient forcible restraint.3 There was a serious dispute as to what obstetric care was in P’s best interests, whether such dispute might arise between the clinicians caring for P or between the clinicians and P, and/or those whose views must be taken into account under MCA s 4(7). Not every dispute over P’s obstetric care would fall within this category; there must be a serious dispute which must have real substance, such as one based on P’s religious beliefs. There was a real risk that P will suffer a deprivation of her liberty which, absent a court order which has the effect of authorising it, would otherwise be unlawful (i.e. not authorised under MCA s 4B of or Sch A1). This raised the question of the interaction between the MHA and MCA addressed below.4

1 At paras 103–104. 2 At the time, defined in Practice Direction 9E, now obsolete and replaced by the guidance of the Vice President [2020] EWCOP 2, at bit.ly/VP-Guide-Jan-20. 3 The court observed at para 117: ‘The use of more than transient forcible restraint of a mother during labour is a grave interference with her rights under Arts 3, 5 and 8 of the ECHR. In my judgment it is so grave that such categories of cases should be the subject of an application to the court.’ 4 See paras 5.93–5.104 below.

5.66 The court went on in FG to produce detailed guidance in an annex to the judgment, which should be followed in cases where a pregnant woman does not have capacity to consent to treatment it is anticipated may be required during the perinatal period.1 It ought to be possible to avoid recourse to MCA s 4B if an application is brought within the timeframes set out within this annex, as the court’s decision regarding authorisation ought to be obtained in good time prior to the due date for delivery. It may of course remain necessary to rely on s 4B if the patient goes into labour unexpectedly. Many of the good-practice points identified in FG are applicable more generally to acute medicine, and in particular, the warnings against bringing last-minute applications, which have four very undesirable consequences:2 (1) (2) (3) (4)

the application is more likely to be dealt with by an out-of-hours judge and without a full hearing in public; the available written evidence is likely to be incomplete and necessitate substantial oral evidence; it seriously undermines the role the Official Solicitor can and should play in the proceedings; and it deprives the court of the opportunity to direct that further evidence, including independent expert evidence, is obtained in relation to the issue of capacity and best interests. 194

Restraint and Deprivation of Liberty 5.68 Those considering applications for serious medical treatment may also be assisted by para 23 of the annex concerning the evidence which should be filed. Whilst the specifics of the court’s list in the annex are of course directed to obstetric cases, the level of detail required from clinicians of different disciplines will be similar in many other kinds of medical case. 1 2

See Annex 1 to the judgment in FG. At para 22.

Admission to an intensive care unit: R (Ferreira) v HM Senior Coroner for Inner South London 5.67 Maria Ferreira was a patient with Down’s syndrome and a severe learning disability, who had limited mobility and required 24-hour care. She had a strong dislike of hospitals and found the procedures frightening. She lacked capacity to consent to hospital treatment. She became unwell and was admitted to hospital. As an inpatient, she continued to deteriorate and was transferred to the ICU, where she was heavily sedated and intubated. A few days later, having accidentally pulled out her endotracheal tube, despite prompt and careful attempts at resuscitation, she died from respiratory failure. The case began as a judicial review of the decision of HM’s Senior Coroner for Inner South London, to conduct an inquest without a jury, the claim being brought by Maria Ferreira’s sister.1 Before the Divisional Court, the claimant argued, relying on Cheshire West, that the coroner’s decision was flawed as the deceased had been deprived of her liberty within the meaning of Art 5 of the ECHR at the time of her death and was therefore in state detention for the purposes of s 7(2)(a) of the Coroners and Justice Act 2009 (‘CJA 2009’) thus necessitating a jury inquest.2 The Divisional Court considered that the coroner had been entitled to find Maria Ferreira was not in state detention. On appeal to the Court of Appeal, this decision was affirmed.3 1 [2015] EWHC 2990 (Admin), [2015] 1 WLR 2385. 2 Section 7(2)(a) requires a jury to be empanelled where the coroner has reason to suspect that ‘the deceased died while in custody or otherwise in state detention’. State detention is further defined under s 48 of the CJA 2009 as being where a person was ‘compulsorily detained by a public authority within the meaning of s 6 of the Human Rights Act 1998’. 3 R (On the Application of Ferreira) v HM Senior Coroner for Inner South London [2017] EWCA Civ 31.

Ferreira in the Court of Appeal 5.68 In the Court of Appeal, Arden LJ, giving the judgment of the court, determined that there would be no deprivation of liberty in circumstances where a patient is admitted for life-saving medical treatment because: ‘The Strasbourg court in Austin’s case 55 EHRR 14 has specifically excepted from article 5.1 the category of interference described as “commonly occurring restrictions on movement”. In my judgment, any deprivation of liberty resulting from the administration of life-saving treatment to a person falls within this category. It is as I see it “commonly occurring” because it is a well-known consequence of a person’s condition, when such treatment 195

5.68  Restraint and Deprivation of Liberty is required, that decisions may have to be made which interfere with or even remove the liberty she would have been able to exercise for herself before the condition emerged.’1 Moreover, she found that the administration of life-saving medical treatment falls outside Art 5.1 of the ECHR: ●●

●●

‘so long as [it is] rendered unavoidable as a result of circumstances beyond the control of the authorities and [is] necessary to avert a real risk of serious injury or damage, and [is] kept to the minimum required for that purpose …’;2 and ‘… what these qualifications mean is in essence the acute condition of the patient must not have been the result of action which the state wrongly chose to inflict on him and that the administration of the treatment cannot in general include treatment that could not properly be given to a person of sound mind in [Maria Ferreira’s] condition according to the medical evidence.’3

As regards the decision of Cheshire West, she accepted that it was distinguishable on the basis that: ●● ●●

it was directed to a different situation, namely that of the living arrangements for persons of unsound mind; and she did not identify any guidance within the decision as to the position with regard to Art 5 of the ECHR in the urgent or intensive care context.4

She further decided that: ●●

●●

●●

1 2 3 4 5 6 7

There is, in general, no need in the case of physical illness for a person of unsound mind to have the benefit of safeguards against the deprivation of liberty where the treatment is in good faith and is materially the same treatment as would be given to a person of sound mind with the same physical illness;5 Article 5.1(e) of the ECHR is directed towards the treatment of persons of unsound mind because of their mental impairment. This does not apply where a person of unsound mind is receiving materially the same medical treatment as a person of sound mind. Article 5.1(e) of the ECHR is thus not concerned with the treatment of the physical illness of a person of unsound mind; that is a matter for Art 8 of the ECHR;6 and Even if the acid test in Cheshire West did have to be asked, it could not be said that Maria Ferreira was not free to leave due to some action of the state (although, if she tried to leave, the clinicians would in all likelihood try to persuade her not to) rather the true cause of her inability to leave was her underlying illness for which the state is not responsible.7 R (On the Application of Ferreira) v HM Senior Coroner for Inner South London [2017] EWCA Civ 31 at para 88. Ibid, para 89 Ibid, para 89. Ibid, para 91. Ibid, para 93. Ibid, para 95. Ibid, paras 96–101.

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Restraint and Deprivation of Liberty 5.71 5.69 The claimant’s application for permission to appeal to the Supreme Court was refused on the basis the application did not raise an arguable point of law; Lady Hale, Lord Clarke and Lord Wilson concluded the Court of Appeal was right for each of the reasons they gave. Thus Ferreira confirms what ought to have been an obvious point: where a person who lacks capacity is so severely physically unwell that their life would be at immediate risk if they were to be anywhere other than a hospital bed, and they are for all practical purposes unable to leave hospital, the question of whether they are being deprived of their liberty does not really arise.

Children and deprivation of liberty Children under 16 5.70 The DOLS procedure in MCA Sch A1 does not apply to children. It may, however, still be necessary to obtain the court’s authorisation for a regime for a child that may amount to a deprivation of liberty (rather than merely a restriction of their liberty). The law on this point is currently unclear. In RK v BCC,1 determined before Cheshire West it was considered to be within the parents’ exercise of their responsibility to impose or authorise others to impose restrictions on their children’s liberty, provided this did not go so far as to deprive them of their liberty, as the child’s Art 5 rights would be engaged.2 1

RK v BCC [2011] EWCA Civ 1305. On the facts in RK it was held that there was not a deprivation of liberty. 2 Ibid, para 14, per Thorpe LJ: ‘The consensus is to this effect: The decisions of the European Court of Human Rights in Neilson v Denmark [1988] 11 EHRR 175 and of this court in Re K [2002] 2 WLR 1141 demonstrate that an adult in the exercise of parental responsibility may impose, or may authorise others to impose, restrictions on the liberty of the child. However restrictions so imposed must not in their totality amount to deprivation of liberty. Deprivation of liberty engages the Article 5 rights of the child and a parent may not lawfully detain or authorise the deprivation of liberty of a child.’

5.71 In the subsequent decision of Trust A v X and A Local Authority,1 however, Keehan J held that the parents of ‘D’, a 15-year-old boy diagnosed with ADHD, mild learning disability and Asperger’s syndrome, who was under continuous supervision and control and not free to leave a psychiatric unit, could give consent to arrangements amounting to a deprivation of liberty, so that there was no breach of his Art 5 rights. The judge held that this was an appropriate exercise of parental responsibility for the child, saying: ‘Those arrangements are and were made on the advice of the treating clinicians. All professionals involved in his life and in reviewing his care and treatment are agreed that these arrangements are overwhelmingly in D’s best interests. On the facts of this case, why on public policy or human rights grounds should these parents be denied the ability to secure the best medical treatment and care for their son? Why should the state interfere in these parents’ role to make informed decisions about their son’s care and living arrangements?’2 The comments of the Supreme Court in Re D (A Child)3 must, however, raise some doubt as to the validity of this point in future cases.4

197

5.71  Restraint and Deprivation of Liberty Further, in Re Z, (A Child: Deprivation of Liberty: Transition Plan),5 Gwynneth Knowles J considered that where a 14-year-old boy would be subject to significant restraint in the process of transferring him from his home environment to his new placement, it would ‘strain the boundaries of what was permitted by a parent with respect to the exercise of their parental responsibility’, such that it was appropriate for the local authority to seek authorisation of the plan from the court. She therefore made declarations ‘(a) that it was lawful and in his best interests for Z to be conveyed from his home address to school and in so far as the conveyance between those two places amounted to a deprivation of his liberty, it was necessary and proportionate to the risk of harm to him; and (b) the local authority its employees, servants and/or agents were authorised to use reasonable restraint will force to give effect to the transition plan approved by the court.’6 1 [2015] EWHC 922 (Fam). 2 Ibid, para 60. Keehan J considered the position might be different if D’s parents had been acting contrary to medical advice, or not fully involved in his life including after his placement at the unit. 3 [2019] UKSC 42: see para 5.72 below. 4 See para 5.72 below. 5 [2020] EWHC 3038 (Fam), decided after Re D in the Supreme Court. 6 Ibid, para 50.

Minors of 16–17 years 5.72 In a subsequent decision regarding the child ‘D’ once he reached 16,1 Keehan J considered that parental consent was no longer sufficient authority for the deprivation of his liberty. Keehan J held that: ‘… whilst acknowledging that parents still have parental responsibility for their 16 and 17 year old children, I accept that the various international conventions and statutory provisions referred to, the UNCRC and the Human Rights Act 1998, recognise the need for a greater degree of respect for the autonomy of all young people but most especially for those who have attained the age of 16 and 17 years. Accordingly, I have come to the clear conclusion that however close the parents are to their child and however cooperative they are with treating clinicians, the parent of a 16 or 17 year old young person may not consent to their confinement which, absent a valid consent, would amount to a deprivation of that young person’s liberty.’2 The case was appealed. The Court of Appeal overturned the decision of Keehan J, but the Supreme Court determined, by a narrow majority of 3:2, that it is not within the scope of parental responsibility for a parent to authorise or consent to arrangements which would amount to deprivation of liberty of a 16 or 17 year old.3 Lady Hale considered that the key issue was: ‘whether the restrictions in question fall within normal parental control for a child of this age or do they not? If they do, they will not fall within the scope of article 5; but if they go beyond the normal parental control, article 5 will apply (subject to the question of whether parental consent negates limb (b) of the Storck criteria …).’4 Lady Hale considered that, as the restrictions in question did go beyond what is normal for a non-disabled child of the same age, D was ‘confined within the 198

Restraint and Deprivation of Liberty 5.74 meaning of article 5.’5 There was nothing in the Strasbourg case law to suggest a general principle of substituted consent, such that parental consent would satisfy the requirements of Art 5.6 That being the case, authorisation for the deprivation of liberty was required in compliance with the procedural requirements of Art 5. Since the DOLS authorisation scheme does not (at present) extend to those under 18,7 this could only be achieved by an application to the court. For children under 16, Baroness Hale stated that, ‘[l]ogically, this conclusion would also apply to a younger child whose liberty was restricted to an extent which was not normal for a child of his age’; however, as the question did not arise on the facts of this particular case, it was left open to be decided in a case where it did arise.8 1 Birmingham City Council v D & W [2016] EWCOP 8, see particularly paras 105–110. 2 Ibid, para 105. 3 Re D (A Child) [2019] UKSC 42, per Baroness Hale at para 49. 4 Ibid, para 39. 5 Ibid, para 42. 6 Ibid, para 44. 7 See para 5.108 below. 8 Re D (n3 above) at paras 50 and 90.

5.73 Although outside the scope of this book, those dealing with cases involving the deprivation of liberty of young people for any significant length of time may wish to consider the line of recent cases concerning children who require secure accommodation, but who, because of a shortage of resources, cannot be placed in a secure children’s home which is approved for that purpose.1 1 See in particular: Re T [2021] UKSC 35, in which the Supreme Court accepted that the inherent jurisdiction of the High Court could be used to authorise a deprivation of liberty in such circumstances; and Wigan MBC v Y (Refusal to Authorise Deprivation of Liberty) [2021] EWHC 1982 (Fam), in which MacDonald J refused to authorise the deprivation of liberty (in hospital) in question, on the basis that Y’s situation was ‘an inappropriate, demeaning and, quite frankly, brutal one for a 12 year old child’ and that ‘it would border on the obscene to use the protective parens patriae jurisdiction of the High Court to authorise it.’

Pointers for practitioners considering unclear cases Is there a deprivation of liberty? 5.74 It is easy to see why medical practitioners may become confused where, following Cheshire West, there may be a deprivation of liberty where an incapable patient is not free to leave and cannot be discharged from hospital for an indefinite period (which may be many days or weeks), pending identification of a suitable residential place.1 Cases such as FG demonstrate that medical treatment delivered to an acutely unwell, incapable patient may amount to a deprivation of liberty; but the case of Ferreira suggests that generally there is not a deprivation of liberty if the patient is receiving life-saving treatment of a ‘routine’ character. 1

In these circumstances the authorisation route under Sch A1 is likely to be appropriate, and is routinely used in practice. Until the Liberty Protection Safeguards are implemented, however, this will only apply where the patient is 18 or over.

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5.75  Restraint and Deprivation of Liberty 5.75 In FG the prospect that the patient might require forcible restraint highlighted the likelihood of a potential deprivation of liberty. However, the following points must be remembered: ●● ●●

●●

Forcible restraint is only one of the more obvious factors which may point to a deprivation of liberty. Patients (including those who lack capacity) will exhibit the full range of awareness and compliance. Such awareness and compliance will fluctuate. A care regime that requires only occasional rather than continuous restraint, but has inherent within it the ever-present prospect of restraint being used, is likely to satisfy at least the limb of the acid test relating to ‘continuous supervision and control’. For the compliant incapacitated patient, where restraint is not anticipated, the deprivation of liberty may not be obvious. In these circumstances the question must be asked, ‘would this patient be allowed to leave’? If the answer is no, then it seems likely at least one limb of the Cheshire West acid test is satisfied.

5.76 Following Ferreira, in some cases it will not be necessary to obtain a DOLS authorisation (or court authorisation for deprivation of liberty) merely to treat an acutely unwell inpatient who is otherwise physically incapable of leaving the ward due to their acute medical problems. However, caution should be exercised. The Court of Appeal specifically contrasted the situation of Maria Ferreira with that of FG, saying: ‘The pregnant woman in question was to be prevented from leaving the delivery suite and might be compelled to submit to invasive treatment, such as a Caesarean section. If these steps had to be taken, the treatment would be materially different from that given to a person of sound mind. By contrast, I do not consider that authorisation would be required because some immaterial difference in treatment is necessitated by the fact that the patient is of unsound mind or because the patient has some physical abnormality.’1 The scope of what is generally termed ‘the Ferreira carve out’ remains to be determined. It has been considered in two leading cases. In Re D, Lady Arden reiterated the principle set out in Ferreira, saying: ‘It follows that there will be cases where a person loses their liberty but the acid test in Cheshire West, as Lady Hale describes it, does not apply. That conclusion is shown by observing that D’s case is about living arrangements. It is not about a child, or anyone else, needing life-saving emergency medical treatment. For the reasons which the Court of Appeal (McFarlane LJ, Sir Ross Cranston and myself) gave in R (Ferreira) v Inner South London Senior Coroner [2018] QB 487, the situation where a person is taken into (in that case) an intensive care unit for the purpose of lifesaving treatment and is unable to give their consent to their consequent loss of liberty, does not result in a deprivation of liberty for article 5 purposes so long as the loss of liberty is due to the need to provide care for them on an urgent basis because of their serious medical condition, is necessary and unavoidable, and results from circumstances beyond the state’s control (para 89).’2

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Restraint and Deprivation of Liberty 5.78 Subsequently, in An NHS Trust v X (No 2),3 Sir James Munby cited the above passage in Re D; he considered this part of the legal landscape was ‘difficult and as yet only partially explored’, noting the tension between various parts of the case law. Although he considered there was no need to decide the point further, he did express a view that the provision of an urgently required blood transfusion would fall within the carve out.4 A helpful question to ask is whether the patient’s situation and treatment is what any patient would require had they had the misfortune to succumb to that particular illness (in which case Ferreira is more likely to apply), or whether in fact their situation and the treatment is affected by issues of mental disorder or, most broadly, ‘unsoundness of mind’. Controversial treatment may well engage questions both as to the lawfulness of treatment and whether the patient is to be regarded as being detained for the purposes of administering such treatment. 1 2 3 4

R (On the Application of Ferreira) v HM Senior Coroner for Inner South London [2017] EWCA Civ 31 at para 90. [2019] UKSC 42 at paras 119–120. [2021] EWHC 65 (Fam), discussed further in Chapter 4: Deciding for Others – Children. Ibid, paras 127–130.

5.77 ●●

●●

●●

In broad terms, an appropriate starting point will be as follows: Treatment given in a medical emergency for an acute, life-threatening or other extremely serious condition is unlikely, in itself, to involve a deprivation of liberty. This is likely to be the most common scenario in A&E, the Medical Admissions Unit, initial admission to the ICU, Coronary Care Unit, etc. However, in the majority of cases this emergency treatment will progress to ongoing care. The prospect that such ongoing care may amount to a deprivation of liberty will increase with the length of the inpatient stay, particularly as the patient’s physical condition improves.1 Transfer: for a very short journey, routine restraint for the purposes of ensuring a safe transfer to/from hospital in an ambulance may amount to a restriction rather than a deprivation of liberty, but where there is doubt, authorisation for a deprivation of liberty should be obtained. The position will need to be considered particularly carefully in a situation either where a lengthy transfer by ambulance, is anticipated, perhaps requiring sedation, or where the restraint may require significant force being used even for a short period.2

1 See, for example, the Law Society’s Deprivation of Liberty Guide at 4.5 and 4.19–4.27. 2 See para 5.60 above, and further Aftanache v Romania [2020] ECHR 339 confirming that in Strasbourg jurisprudence the taking of a person by the police to a psychiatric hospital against their will amounts to a deprivation of liberty.

5.78 Features that will suggest a restriction on liberty may amount to actual deprivation of liberty will include:1 ●● ●● ●● ●● ●●

the degree and duration of any physical restraint; the use of sedation; the use of other invasive treatment, such as catheters and/or intravenous drips; observation and monitoring levels; refusal to allow family members any access to the patient (but not if merely regulating visiting times); 201

5.78  Restraint and Deprivation of Liberty ●● ●● ●●

the requirement for a person to remain in a certain area of the department, and measures imposed to enforce this restriction; a requirement that the person does not leave the department pending further tests or transfer; whether the person would be permitted to leave (such as if relatives wished to take the patient home), regardless of whether the person or their family have expressed such a wish.

The considerations in FG are not confined to obstetric care. In all cases where there is a planned admission for assessment, investigation or surgery for a patient who may lack capacity (as in Re CD2), the hospital must anticipate whether the circumstances of the admission may amount to a deprivation of liberty. This may include consideration of the length of the admission, and the likelihood of compliance with treatment, but neither of these features is a determining factor. Where there is any doubt, legal advice should be sought. 1 These features are adapted from the A&E checklist set out in the Law Society’s Deprivation of Liberty guidance at para 4.24. 2 [2015] EWCOP 74.

Contingency declarations 5.79 Finally, for practitioners considering the situation of a patient who is at risk of losing capacity, but who currently does have capacity, the case of Guys and St Thomas’s NHS Foundation Trust v R1 confirms that: ●● ●●

●●

an application can be made in advance of the person losing capacity; although the court cannot make a decision on the patient’s behalf under s 16 in such a situation, the court can make declarations under s 15 of the MCA as to whether future action (in the event of the patient losing capacity – the contingency) would be lawful or unlawful; and if the patient is to be deprived of their liberty, then the authorisation for it will need to be made by a judge exercising the High Court’s inherent jurisdiction (because as a s 16 order is not available to the court in this situation, s 4A means the MCA cannot be used to authorise the deprivation of liberty).

Practitioners should be aware that such an application represents a significant interference with the autonomy of a capacitous individual and so cannot be justified unless the circumstances are exceptional. It is suggested that an application should be made where: ●● ●● ●● ●● ●● ●●

there is a real risk, supported by clinical evidence, that P will lose capacity in identifiable future circumstances; there is a real risk due to the medical circumstances that if P loses capacity, there will be insufficient time to bring the matter before the court for a decision as to P’s capacity and/or best interests; there is provision to assess P’s capacity before any action is taken in reliance upon the declaration; the future circumstances in which it will be in P’s best interests to act can be clearly described and defined; the declaration is clearly limited to the period during which capacity is lacking; the act(s), omission(s), or course of conduct the declaration covers are the least restrictive response to the circumstances; 202

Restraint and Deprivation of Liberty 5.81 ●● ●●

the act(s), omission(s), or course of conduct concerned are clearly described, preferably by appending a care plan to the order; and P’s input into and/or agreement with the care plan has been obtained (unless impossible or contrary to their best interests).

This last is especially important. Where the patient has capacity at the time the application is made, it is hard to see how it can be in accordance with their right to autonomy not to have such a discussion.2 1 [2020] EWCOP 4. GSTT is discussed further in Chapter 12: Pregnancy and Childbirth, at paras 12.22–12.23. 2 For an example in a non-medical context, see Wakefield MDC & Wakefield CCG v DN & MN [2019] EWHC 2306 (Fam).

D  AUTHORISING A DEPRIVATION OF LIBERTY 5.80 Where a deprivation of liberty is taking place or is anticipated then authorisation will be required to uphold the incapable patient’s Art 5 ECHR rights. MCA s 4A permits the authorisation either via a Court of Protection order or under the ‘Hospital and Care Home Residents: Deprivation of Liberty’ (‘DOLS’) procedures in MCA Sch A1: ‘4A Restriction on deprivation of liberty (1) This Act does not authorise any person (“D”) to deprive any other person (“P”) of his liberty. (2) But that is subject to: (a) the following provisions of this section, and (b) section 4B. (3) D may deprive P of his liberty if, by doing so, D is giving effect to a relevant decision of the court. (4) A relevant decision of the court is a decision made by an order under section 16(2)(a) in relation to a matter concerning P’s personal welfare. (5) D may deprive P of his liberty if the deprivation is authorised by Schedule A1 (Hospital and Care Home Residents: Deprivation of Liberty).’ There are patients who lack capacity, but are nevertheless ineligible to be deprived of their liberty under the MCA, due to the potential for conflict with the regimes for detention under the mental health jurisdiction. The issue of ineligibility is addressed in paras 5.93–5.104 below. 5.81 The s 4A(1) restrictions on the means by which a deprivation of liberty may be authorised are such that neither a court-appointed deputy,1 nor someone with a welfare power of attorney can give consent to a deprivation of liberty.2 The consequence is that any deprivation of liberty of an incapable person will be unlawful unless: ●● ●● ●● ●●

the deprivation of liberty is for life-sustaining treatment and is in accordance with MCA s 4B; valid authorisation has been given in accordance with MCA Sch A1; detention is in accordance with the MHA; or it is in accordance with a court order either of the Court of Protection or the High Court exercising its inherent jurisdiction. 203

5.81  Restraint and Deprivation of Liberty 1

This is because only the court’s order under s 16(2)(a) is included as authorising a deprivation of liberty, not the decisions of a deputy under s 16(2)(b). 2 It remains to be decided whether a person with a health and welfare LPA or a health and welfare deputy can – if it is expressly included under the terms of their appointment or deputyship – be empowered to consent to a treatment or care plan that would otherwise meet the objective test of a deprivation of liberty, thereby providing the ‘consent’ which means that the subjective element of a deprivation of liberty is not met. The case of AJ (Deprivation of Liberty Safeguards) [2015] EWCOP 5, [2015] Fam 291 did not address the question whether P could have expressly empowered her welfare LPA to do this, but clearly proceeded on the basis that, even where a wide, general power had been given, this did not empower the deputy to consent to a deprivation of liberty. Staffordshire CC v SRK [2016] EWCOP 27, [2016] Fam 419 concerned the question of whether a welfare order was necessary in circumstances where a large damages award was funding a privately administered care regime that resulted in a deprivation of liberty. Charles J determined that a welfare order was necessary. Although he did not hear detailed argument on the question, he appears to have doubted that such a power could be granted. Moreover, he observed that, even if a deputy could potentially be empowered to consent, this ‘would not help much because all it would do is add a person on the ground with obligations to monitor and review the (private) deprivation of liberty.’ The case also serves as a reminder that the terms of any deputyship must always be closely scrutinised.

5.82

MCA s 4B provides:

‘4B Deprivation of liberty necessary for life-sustaining treatment etc (1) If the following conditions are met, D is authorised to deprive P of his liberty while a decision as respects any relevant issue is sought from the court. (2) The first condition is that there is a question about whether D is authorised to deprive P of his liberty under section 4A. (3) The second condition is that the deprivation of liberty– (a) is wholly or partly for the purpose of– (i) giving P life-sustaining treatment, or (ii) doing any vital act, or (b) consists wholly or partly of– (i) giving P life-sustaining treatment, or (ii) doing any vital act. (4) The third condition is that the deprivation of liberty is necessary in order to– (a) give the life-sustaining treatment, or (b) do the vital act. (5) A vital act is any act which the person doing it reasonably believes to be necessary to prevent a serious deterioration in P’s condition.’ Thus, where it is necessary to give treatment to sustain life or prevent a serious deterioration in the condition of a patient who is, or may be, incapable, and it is necessary to deprive them of their liberty in order to do so, the treatment may be given, provided that a decision of the court is to be sought about any issue relating to the lawfulness of that deprivation of liberty or treatment. Clinicians must be reassured that urgent, necessary treatment should therefore be given, and will be lawful, provided the duty to obtain the court’s decision is respected. Even if the court’s eventual decision is that the patient did have capacity to refuse treatment, or that the treatment is not in the patient’s best interests, treatment given in the past ought to be lawful under MCA s 5,1 and the deprivation of liberty lawful under MCA s 4B.

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Restraint and Deprivation of Liberty 5.85 It is important to be aware that s 4B is due to be amended substantially by the MC(A)A.2 1 See para 5.12 above. 2 See para 5.105 below.

5.83 Provided the clinician/institution believed at the time of the deprivation of liberty that it was necessary in order to give life-sustaining treatment or to prevent a serious deterioration in the patient’s condition, then MCA s 4B is capable of being satisfied, whether or not the clinician actually had the specific legal provision in mind.1 However, MCA s 4B cannot be used to retrospectively plug a gap in seeking or obtaining authorisation when this was not the belief and intention of the treating clinician at the time.2 Further, the court in Re AEL3 confirmed that s4B cannot be interpreted as a stand-alone provision as ‘unrestricted authority to deprive a person of freedom of action whenever a third party considers her safety is at risk’; it must be interpreted together with s4A. 1 2 3

A County Council v MB, JB and A Residential Home [2010] EWHC 2508 (COP) at paras 78–88. Ibid, paras 89–96. [2021] EWCOP 9.

Procedure 5.84 The Court of Protection Rules 20171 provide a single procedural code covering the application for court authorisation for all matters within its jurisdiction.2 Where an application is made under the inherent jurisdiction of the court, the appropriate way to commence proceedings will normally be under Pt 8 of the Civil Procedure Rules. The detailed procedural aspects of such applications are set out in Chapter 6: Going to Court. 1 SI 2017/ 1035, which came into force on 1 December 2017 and which replace the Court of Protections Rules 2007 (SI 2007/ 1744) (as amended). 2 The jurisdiction does not cover children under 16 or those who are ineligible by operation of MCA Sch 1A. If a person is ineligible, and is not subject to the jurisdiction of the MHA, the party seeking authorisation must invoke the inherent jurisdiction of the court.

MCA/Inherent jurisdiction? 5.85 The vast majority of applications to court for authorisation of a deprivation of liberty will be made to the Court of Protection under the MCA. A small number may however require to be made to the High Court for authorisation under the court’s inherent jurisdiction. This will be necessary in particular where: ●●

●●

an application is being made in respect of a patient who has capacity to consent to treatment, but in respect of whom there is a risk that they will lose capacity in a situation where there is no time to return to court for authorisation (typically, these have been where there is concern about labour and delivery);1 an application is made to authorise the deprivation of liberty of a patient who is ineligible to be deprived of their liberty under the MCA.2 205

5.85  Restraint and Deprivation of Liberty The use of the High Court’s inherent jurisdiction to authorise a deprivation of liberty is controversial, particularly in the context of long term care planning.3 For medical treatment cases, it may be sufficient to rely on the principles are set out in the decision of Baker LJ in A Local Authority v BF,4 which emphasises that the exercise of the jurisdiction must be compatible with Art 5 and identifies the requirements, including reliable evidence that the individual is of ‘unsound mind’ and provision for review. However, the current state of the law has authoritatively been acknowledged to be uncertain, and there remains scope for argument on the issue.5 1 See para 5.79 above. 2 For example, An NHS Trust v Dr A [2013] EWHC 2442 (COP). See paras 5.93–5.104 below. 3 See Wakefield MDC & Wakefield CCG v DN & MN [2019] EWHC 2306 (Fam) and Redcar and Cleveland BC v PR [2019] EWHC 2305 (Fam) in particular. 4 [2018] EWCA Civ 2962 at para 22. But note that this is a decision on permission to appeal the judgment in Southend-on-Sea BC v Meyers [2019] EWHC 399 (Fam), and given the controversy surrounding the issue, there may be scope for further argument on this point. 5 In Mazhar v Birmingham Community Healthcare Foundation NHS Trust [2020] EWCA Civ 1377, Baker LJ considered it unnecessary to determine whether the inherent jurisdiction can be used to deprive a vulnerable adult of their liberty, and undesirable to do so without full argument (para 53). He said ‘The preponderance of authority at first instance supports the existence of this jurisdiction, but there is some authority to the contrary. There is also uncertainty as to whether it is permissible in urgent situations to depart from the Winterwerp criteria, in particular the requirement for medical evidence.’ (para 52).

Review 5.86 Where the court’s authorisation has been obtained, then regardless of how valid the original authorisation may have been, if that deprivation of liberty is not subject to regular review, there will be a breach of the person’s procedural Art 5 ECHR rights. In 2008, prior to the implementation of the DOLS procedure, the Court of Protection considered the appropriate review structure to be put in place while an incapable person remained subject to a court-authorised care plan of the local authority, the implementation of which would amount to a deprivation of liberty.1 The Court of Protection subsequently had the opportunity to consider the process that ought to apply to reviews in Re BJ.2 The DOLS procedure contains specific provisions relating to the reviews of a deprivation of liberty.3 However, these reviews do not apply to deprivations of liberty originally authorised by the court rather than under MCA Sch A1, or to those deprivations of liberty authorised under the court’s inherent jurisdiction. 1 2 3

Salford City Council v GJ [2008] 2 FLR 1295. [2009] EWHC 3310 (Fam). See Pt 8 of Sch A1 to the MCA, paras 101–125.

5.87 There is now settled practice and procedure by which the court will consider reviews of a deprivation of liberty. In Re BJ,1 Munby J found that to comply with Art 5 of the ECHR, a review hearing within four weeks after the making of the interim order was desirable as a matter of general practice (although a different timeframe might be appropriate in some cases). Thereafter, there should be a court review at, or no later than, 12 months after the final hearing and thereafter at similar intervals, so long as the deprivation of liberty continued. This interval was chosen in large part to match the frequency of automatic reviews that take place under MCA Sch A1. 206

Restraint and Deprivation of Liberty 5.89 Between the court reviews there needed to be regular internal reviews, and provision should be made for this in the final order. Munby J stated that: ●● ●● ●●

It was vital that the Official Solicitor or other litigation friend should participate fully in internal reviews. The continuing role of the litigation friend would therefore not have concluded with the final order. No matter what internal structure was put in place for regular reviews, specific provision should be made for evidence of any significant change to lead promptly to an additional internal review. Up-to-date reports were needed for review hearings but unless there had been any material change in the relevant circumstances they could be appropriately brief.2

Munby J held that Art 5(4) of the ECHR did not necessitate an oral hearing at every annual review, with the safeguard that the parties would be entitled to request, and the judge to require an oral hearing where appropriate.3 Subsequently, following the decisions of Munby J in Re X (Deprivation of Liberty),4 there is now a clear ‘streamlined’ procedure for annual reviews of a deprivation of liberty, set out in Practice Direction 11A to the Court of Protection Rules 2017. This is not likely to be so relevant to those concerned with authorisations of medical treatment and any deprivation of liberty arising from such treatment. That is because by its nature, such an intervention tends to be shorter-term and temporary, in contrast to the authorisation of social care living arrangements which are likely to pertain for years. Where treatment will endure long enough to warrant court review, the court is likely to deal with this in the order it initially makes, by directing updating evidence, and a review hearing in the near future. 1 [2009] EWHC 3310 (Fam). 2 Ibid, paras 27–47. 3 On Art 5(4) of the ECHR, see AJ v A Local Authority [2015] EWCOP 5, [2015] Fam 291 at paras 35–36. 4 Re X (Deprivation of Liberty) [2014] EWCOP 25 and Re X (Deprivation of Liberty) (No 2) [2014] EWCOP 37.

DOLS authorisation 5.88 The ‘Hospital and Care Home Residents: Deprivation of Liberty’ procedures (‘DOLS’) set out an entirely self-contained system to govern the admission, detention, reviews and appeals of those incapable patients who are deprived of their liberty in hospitals or registered care homes. The DOLS procedure is found in the lengthy and complex additions to the MCA in Sch A1 and Sch1A. The provisions set out how an application for authorisation is made; the criteria for granting authorisation; when review must take place and how reviews are to be conducted, the support and representation to which incapable people are entitled in the process; and the appeal process. The cumbersome DOLS procedure is dealt with in detail in the many other works dedicated to the subject and hence only a very brief summary is given here. 5.89 Generally the procedure will be commenced when the ‘Managing Authority’ of a hospital or registered care home believes the circumstances in which someone is to be admitted to their institution are such that a deprivation of liberty may occur. The ‘Managing Authority’ is required to seek authorisation 207

5.89  Restraint and Deprivation of Liberty from its relevant ‘Supervisory Body’ (which will be the local authority for a hospital in England and the Welsh Assembly for Wales, or a local authority for a care home). The ‘Supervisory Body’ can then give standard authorisation (in advance) permitting detention of the incapable person for up to 12 months. If an emergency situation arises where the deprivation of liberty cannot be delayed until a standard authorisation is given, the Managing Authority can self-authorise the deprivation of liberty with an interim ‘urgent’ authorisation. This can last for up to seven days and can be extended for a maximum of a further seven days. 5.90 The standard authorisation will be given if the ‘qualifying requirements’ are met following six professional assessments, which must be carried out within 21 days of each other.1 These are: ●● ●● ●● ●● ●● ●●

a ‘Best Interests’ assessment (whether the proposed plan of care will in fact deprive P of liberty, is in the person’s best interests, and is necessary and proportionate); a ‘Mental Health’ assessment (whether the person suffers with a mental disorder as defined within the MHA); a ‘Mental Capacity’ assessment (whether the person lacks capacity to decide whether to be accommodated as proposed); an ‘Age’ assessment (whether the person is over 18 years old); a ‘No Refusals’ assessment (whether the deprivation of liberty conflicts with a valid advance directive or valid decision of someone with power of proxy); and an ‘Eligibility’ assessment (whether the person is ineligible because the authorisation would conflict with a pre-existing MHA obligation or because the person is indicating their objection and falls within the scope of the MHA).2

1 MCA DOLS standard forms can be found at: bit.ly/DoL-Resource. These are not statutory forms, but it is good practice to use them or a similar form so as to prompt all relevant matters to be considered. 2 MCA Sch 1A sets out these eligibility criteria and the interaction of the MCA with the MHA. See paras 5.93–5.109 below.

5.91 The mental health requirement raises a particular problem when considering patients admitted to hospital who are acutely unwell due to a physical illness, and lack capacity because of that physical condition, rather than a mental disorder. If they do not satisfy the mental health requirement, the DOLS procedure does not apply, although they may well fall within scope of the MCA; in such cases, a deprivation of liberty can only be authorised by the court. 5.92 It is important to remember that although the purpose of the authorised deprivation of liberty may be to treat the patient, the DOLS process itself does not authorise that treatment. To be lawful, the proposed assessment or treatment must still be either: (1) such that it falls within MCA ss 5, 6; or (2) the subject of a Court of Protection order; or (3) performed with the patient’s capable consent;1 or (4) performed with the consent of a welfare deputy or someone with a welfare power of attorney.2 1 Because capacity is issue specific, a patient who meets the mental capacity requirement for DOLS (because they lack capacity to decide where they should be accommodated) may nevertheless have capacity to consent to treatment.

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Restraint and Deprivation of Liberty 5.94 2 This requires that the welfare deputy has been given sufficient powers. MCA, s 16(5) states: ‘The court may … confer on a deputy such powers or impose on him such duties, as it thinks necessary or expedient for giving effect to, or otherwise in connection with, an order or appointment made by it under subsection (2).’

Is the patient ineligible to be detained under the MCA? 5.93 The existence of two apparently overlapping legislative schemes (the MHA and MCA) permitting detention for treatment has led to real confusion, including by some judges, over which power to detain and treat can and/or should be relied upon in a particular case. In broad terms: ●●

●●

A DOLS or COP authorisation will be required when one wishes to deprive an incapable person of their liberty either for welfare reasons, or to provide medical treatment for a physical disorder that does not arise from a mental disorder.1 The MHA will be inapplicable as it does not authorise treatment for a condition which is neither a mental disorder nor a physical condition arising as a result of one. If treatment for mental disorder is to be given then, in the specific scenario of an incapable but compliant patient, there is potentially a choice between the provisions of the MCA or the MHA.

However, as the MHA Code of Practice states: ‘… if the MCA can be used safely and effectively to assess or treat a patient, it is likely to be difficult to demonstrate that the criteria for detaining the patient under the Mental Health Act are met.’2 The MHA will be required where the purpose of the detention is to treat a mental disorder in hospital and the patient is indicating any dissent to the proposed care plan, whether or not they have capacity. This is because in this latter case it is likely that neither a DOLS authorisation nor an order of the Court of Protection could be relied upon as the powers under the MCA are specifically curtailed by MCA s 16A(1) which provides that: ‘If a person is ineligible to be deprived of liberty by this Act, the court may not include in a welfare order provision which authorises the person to be deprived of his liberty.’ One of the main sources of confusion arises when attempting to identify if a person is ‘ineligible’ to be deprived of their liberty under the MCA. If a patient is ‘ineligible’ to be deprived of their liberty under the MCA, neither a standard nor urgent authorisation will be available. 1 See para 5.5 above (N1); and the more detailed discussion of the extent of powers to treat physical disorder under MHA, s 63 in Chapter 3: Deciding for Others – Adults, paras 3.4–3.8; Chapter 13: Feeding, paras 13.17–13.20 and Chapter 17: Treating Suicidal Patients, paras 17.22–17.23, 17.38–17.45. 2 MHA Code of Practice at para 14.23.

5.94 The ineligibility criteria for authorisation of a deprivation of liberty under the MCA are found in Sch 1A. They are complex and difficult to understand. Five cases are identified, in the table in Pt 1 of Sch 1A, where a patient may be ineligible. They need to be considered carefully together with the other provisions of Sch 1A. The route through MCA Sch 1A is not straightforward. It may be helpful to consider the four combinations of incapacity and compliance, although 209

5.94  Restraint and Deprivation of Liberty this does not provide an answer to all the situations that will potentially be encountered: The patient has capacity and is not compliant

Detention may only be under the MHA as there is no jurisdiction under MCA for patients with capacity

The patient lacks capacity and is not compliant (i.e. objects to being a mental health patient, or being given some or all of the mental health treatment)

Detention in order to give treatment in hospital for a mental disorder can only be under the MHA as the patient is ineligible by operation of either Case A or Case E / para 5 in Sch 1A of the MCA

The patient has capacity and is compliant

In the event that an issue as to necessity to detain (rather than informal admission) might arise, this would arise solely under the MHA as there is no jurisdiction under MCA for patients with capacity

The patient lacks capacity and is compliant

Detention under the MHA or a deprivation of liberty authorised by the MCA may be potential alternatives for treatment

5.95 One category of case where it is certain that a patient would be ineligible to be deprived of their liberty under the MCA is where the deprivation of liberty in connection with the medical treatment occurs within the same hospital where the patient is detained for mental health assessment or treatment under MHA s 2, 3 or 4, as opposed to the patient being transferred to an acute hospital under MHA s 17 leave. Such a patient falls within ‘Case A’ under MCA para 2 of Sch 1A.1 1

NHS Trust v Dr A [2013] EWCOP 2442.

5.96 A second case where it is likely the patient would be ineligible to be deprived of their liberty under the MCA is where, in circumstances where the patient is not detained nor subject to any of the MHA regimes (hospital, community or guardianship), and where (1) the primary purpose of the proposed medical treatment may fall within the definition of MHA, s 145(4) as it is to alleviate, or prevent a worsening of, their mental disorder or one or more of its symptoms or manifestations; and (2) P objects to the treatment; but (3) the treating clinicians do not propose to provide the medical treatment under MHA. Such a patient would potentially fall within ‘Case E’ under MCA para 2 of Sch 1A, but be ineligible under para 5 of the Schedule.1 1 See A PCT v LDV, CC & B Healthcare Group [2013] EWHC 272 (Fam) for a case which Baker J considered might fall within Case E (the issue was not ultimately decided); and Dr A on its initial facts, before Dr A was detained under the MHA shortly before the final hearing.

5.97 The ineligibility provisions that apply in relation to a person who may be facing detention in order to provide treatment for a mental disorder should prevent the protections in the MHA being circumvented by the application of the MCA. However, the situation is different if what is being proposed is detention other than in a hospital. In these circumstances the person does not fall within the definition of a mental health patient. A Primary Care Trust v TB1 clarified that if the patient’s objection relates to detention for mental health treatment that is to be provided 210

Restraint and Deprivation of Liberty 5.99 in a registered care home as opposed to in a hospital setting (such as specialist rehabilitative treatment) then the ineligibility criteria will not apply and an authorisation under MCA may be provided even where the patient objects to that detention and/or treatment. In situations such as this, however, it will be important to consider whether the care home falls into the definition of a hospital as given in the MHA. 1

[2009] EWHC 1737 (Fam), [2010] 1 WLR 2662.

5.98 A patient who lacks capacity and does not object to their placement may or may not be liable to be detained under the MHA. For example, in BB v AM1 the patient, who lacked capacity, was content to stay in hospital and take her medication. She reported being happy and made no attempts to leave. If she had expressed an intention to be discharged or to return home, her treating psychiatrist stated that she would be assessed for detention under the MHA. Based on these facts, Baker J stated: ‘Accordingly, I conclude that, on the evidence at present available, it is not established that the criteria under section 2 or 3 of the Mental Health Act are made out and it is therefore not proved that BB falls within the scope of that Act. Thus she is not ineligible to be deprived of her liberty within the meaning of the eligibility requirement in Schedule 1A of the Mental Capacity Act, and as a result this court is not prevented from including in a welfare order provision which authorises deprivation of her liberty.’2 1 2

[2010] EWHC 1916 (Fam). Ibid, para 27.

5.99 In J v The Foundation Trust1 Charles J’s initial view was that the MHA always took primacy over the MCA as the appropriate regime for authorising a deprivation of liberty. However, this is no longer regarded as correct, having been disapproved by Charles J himself in the later case of AM v South London & Maudsley NHS Foundation Trust.2 In AM v SLAM the patient lacked capacity and required both physical treatment and assessment of her mental disorders. The situation was therefore different from J v The Foundation Trust, where the admission was purely for physical treatment. Although she was compliant, and her discharge home was not being sought, her nearest relative objected to her being detained under the MHA rather than the MCA. It was argued that, as her deprivation of liberty could be authorised, and her needs met under what was perceived to be a less restrictive DOLS regime, she must not be detained under either s 2 or 3 of the MHA. Charles J stated that: ‘… the reality is that the choice of statutory route relates to whether (a) the relevant person should be detained under the MHA, or (b) his (possible) deprivation of liberty should be authorised under the DOLS. This is because the application of s 131 MHA and ss 5 and 6 of the MCA to the assessment and treatment of a compliant incapacitated patient work together.’3 Referring to the then MHA Code of Practice, Charles J concluded that in these circumstances; ‘… it will generally but not always be more appropriate to rely on DOLS … and the correct position is that there may be cases in which a compliant incapacitated person may properly and lawfully be admitted, assessed or 211

5.99  Restraint and Deprivation of Liberty treated and detained under Part II MHA when he or she could be assessed or treated pursuant to s 131 MHA and ss 5 and 6 MCA and be the subject of the DOLS.’4 This led to the observation that: ‘the theoretical and practical availability of the MCA regime and its DOLS is one of the factors that needs to be considered by the MHA decision maker in carrying out that search, as are their overall impact in best achieving the desired objective when compared with other available choices and so detention under ss 2 or 3 MHA.’5 1 2 3 4 5

[2009] EWHC 2972 (Fam). [2013] UKUT 365 (AAC). Ibid, para 63. Ibid, paras 67–68. Ibid, para 75(v).

5.100 Acknowledging that this conclusion was at odds with part of the reasoning his early judgment in J v The Foundation Trust, the judge confirmed that the part of that decision stating the MHA had primacy was incorrect. Any references to the MHA having primacy was to be limited to Case E in MCA Sch 1A, and that even in that confined context, there was a further qualification that the two statutory schemes are not always mutually exclusive.1 1

[2013] UKUT 365 (AAC) at para 78(iv).

5.101

The current MHA Code of Practice states:

‘The choice of legal regime should never be based on a general preference for one regime or the other, or because one regime is more familiar to the decision-maker than the other. Such considerations are not legally relevant and lead to arbitrary decision-making. In addition decision-makers should not proceed on the basis that one regime is generally less restrictive than the other. Both regimes are based on the need to impose as few restrictions on the liberty and autonomy of patients as possible. In the particular circumstances of an individual case, it may be apparent that one regime is likely to prove less restrictive. If so, this should be balanced against any potential benefits associated with the other regime.’1 As can be seen from the analysis above, this is both legally accurate and good advice. Examples of the application of these principles can be seen in two cases, both decided prior to the clarification that Charles J gave in AM v South London & Maudsley NHS Foundation Trust. 1

At para 13.58.

5.102 In DN v Northumberland Tyne & Wear NHS Foundation Trust1 the claimant successfully appealed against the refusal of a mental health tribunal to discharge him from detention under MHA, s 3, on the basis that he could be discharged to a care home where he would be potentially subject to an authorised deprivation of liberty. The Upper Tribunal identified that the question for it to resolve was whether DN was (for these purposes) within the scope of either MHA, s 2 or s 3. It found that he was not. Although he was at that point detained under MHA, s 3, there was no reason why the MCA could not be applied in anticipation of his 212

Restraint and Deprivation of Liberty 5.105 moving to a care home, as permitted by MCA, para 12(3) of Sch A1. While he was suffering from a mental disorder, that did not warrant him being detained for assessment under MHA, s 2(2)(a) because he had already been assessed. 1

[2011] UKUT 327 (AAC).

5.103 In Northamptonshire Healthcare NHS Foundation v ML1 the claimant was a young adult with severe learning disabilities and autism who lacked capacity and was unable to articulate a preference as to his living arrangements. The Court of Protection determined that it would be in his best interests to reside at a specified mental hospital and to undergo treatment there. The court held that the MHA, rather than the MCA, was the appropriate regime under which to authorise his detention. In doing so it confirmed that, ‘it can make no difference at all to ML whether his detention is authorised under the MCA, the MHA or the inherent jurisdiction, each contain rigorous safeguards to review his detention or in the case of the inherent jurisdiction can easily be adapted to do so.’2 It was relevant that the MHA, s 2 assessment that it was intended should be carried out could not be carried out under the MCA. Noting the ‘pressing need for clarity and predictability at the interface of these two complex regimes’, the court observed that: ‘the rationale of the legislation drives one to the MHA where the MHA 1983 is being considered by those who could make an application, predicated on the relevant recommendations under s 2 or s 3. They like the decision maker under the MCA should assume that the treatment referred to in s 3(2) cannot be provided under the MCA.’3 1 2 3

[2014] EWCOP 2. Ibid, para 75. Ibid, para 80.

5.104 A common scenario that will present itself in the context of the need to authorise simultaneous physical treatment decisions and mental health treatment will be where, like in NHS Trust v FG,1 a patient who is subject to detention in a mental hospital is transferred to another hospital for treatment of a physical condition. It was confirmed in FG that, where the physical treatment of a patient could not be authorised under MHA s 63, and the patient was granted conditional leave from the psychiatric hospital under MHA s 17, the patient was ‘not ineligible’ for authorisation under the MCA. If in these circumstances there is the risk that there will be a deprivation of liberty, and either the medical treatment or the circumstances in which it will have to be administered are controversial, it will be necessary to apply to the Court of Protection for an order granting authorisation both for the deprivation of liberty and the treatment. If the matter is less controversial (such as where, for example, the patient does not object) it is more likely to be appropriate to use the DOLS regime. 1

[2014] EWCOP 30. Discussed at paras 5.61–5.66 above.

E  THE MENTAL CAPACITY (AMENDMENT) ACT 2019 5.105 As set out above,1 the decision of the Supreme Court in Cheshire West resulted in a significant increase in the number of people considered 213

5.105  Restraint and Deprivation of Liberty to be deprived of their liberty because of the arrangements for their care or treatment. The government at the time therefore asked the Law Commission to review this area of the law to try to find a more proportionate and less bureaucratic means of authorising deprivation of liberty. This resulted in a recommendation, and draft Bill, for complete reform of the current process by replacing the DOLS regime with the Liberty Protection Safeguards (‘the LPS’). On 16 May 2019 the MC(A)A received Royal Assent but, at the time of writing, it is not in force, and there is considerable uncertainty as to whether that date will be achieved.2 What follows therefore is a summary of the main changes which it is expected will apply under new LPS regime. 1 See paras 5.53–5.54 above. 2 See para 5.3 above.

Section 4B – Life-sustaining treatment or vital act 5.106 MC(A)A, s 2, amending MCA, s 4B, will give express authority for a person to take steps to deprive another person of their liberty if four conditions are met:1 ●● ●● ●● ●●

Condition 1 is that the steps are wholly or partly for the purpose of or consist wholly or partly of giving P life-sustaining treatment or doing any vital act. Condition 2 is that the steps are necessary in order to give the lifesustaining treatment or do the vital act. Condition 3 is that D reasonably believes that P lacks capacity to consent to D taking the steps. Condition 4 is that one of the following applies: (1) where a decision relevant to whether there is authority to deprive P of their liberty is being sought from the court; (2) where a responsible body is determining whether to authorise those arrangements under Sch AA1; or (3) in an emergency.

MCA, s 4B(9) as amended will provide that there is ‘an emergency’ if D reasonably believes that (a) there is an urgent need to take the steps to deprive P of their liberty to give life-sustaining treatment or to do the vital act; and (b) it is not reasonably practicable before taking those steps to (i) make application for P to be detained under MHA Pt 2; (ii) make an application to the court; or (iii) to secure that a responsible body is carrying out functions under Sch AA1. 1

MCA, s 4B(1)–(7) as amended.

Schedule AA1 – the LPS regime 5.107 MC(A)A Sch1 inserts Sch AA1 into the MCA. This will replace Schs A1 and 1A to the MCA. One of the more significant changes of the regime is that a responsible body will be able to authorise arrangements giving rise to a deprivation of a person’s liberty in any setting, not just hospitals or care homes. 5.108 The LPS will apply to any person unable to consent to the arrangements for their care or treatment who is aged 16 or over and has a mental disorder (the 214

Restraint and Deprivation of Liberty 5.112 ‘cared-for person’). The arrangement may make provision for the cared-for person to reside in a particular place, receive care or treatment in a particular place and/or for the means and manner of transport for the cared-for person to, from or between a particular place. The arrangements may be ones that are proposed or are already being carried out. 5.109 Paragraph 6 of Sch AA1 defines the ‘responsible body’. Broadly, depending on where the care is given, the responsible body will be as follows: ●● ●● ●● ●●

If the authorising arrangements are carried out mainly in an NHS hospital, a hospital manager (defined separately by Sch AA1, para 7). If the authorising arrangements are carried out mainly in an independent hospital, the responsible local authority (in England) or Local Health Board (in Wales). If the authorising arrangements are carried out through NHS continuing health care (but not mainly in a hospital), the relevant clinical commissioning group (in England) or Local Health Board (in Wales). In all other cases, the local authority where the care is arranged by the local authority and where care is provided to people paying for their own care (self-funders).

5.110 To authorise the arrangements, pursuant to para 13, the responsible body must be satisfied of three conditions (the ‘authorisation conditions’): ●● ●● ●●

that the cared-for person lacks capacity to consent to the arrangements; that the cared-for person has a mental disorder; and that the arrangements are necessary to prevent harm to the cared-for person, and proportionate in relation to the likelihood and seriousness of harm to the cared-for person.

5.111 The assessment as to whether or not the authorisation conditions are met must be done by a person not involved in the every-day care of, or in providing any treatment to, the person, and who has no connections to a care home (the ‘pre-authorisation review’). Pursuant to para 24(2), the preauthorisation review must be carried out by an Approved Mental Capacity Professional1 where it is reasonable to believe that the cared-for person is objecting to the proposed arrangements, where the arrangements provide for the care or treatment mainly in an independent hospital or the case has been referred to an Approved Mental Capacity Professional and that person has accepted the referral. Pursuant to para 26, where the pre-authorisation review is not carried out by an Approved Mental Capacity Professional, the person carrying out the review must review the information relied on by the responsible body and determine whether it is reasonable for the responsible body to conclude that the authorisation conditions are met. 1 Paragraph 39 requires each local authority to make arrangements for the approval of persons to act as Approved Mental Capacity Professionals. Each local authority is also required to make arrangements to ensure that there are sufficient numbers of persons approved as Approved Mental Capacity Professionals for its area. Paragraph 40 provides for regulations to be made to prescribe the criteria for approval as an Approved Mental Capacity Professional.

5.112 Once an authorisation is given, a number of safeguards are out in place for the cared-for person. These include: ●●

regular reviews of the authorisation by the responsible body or care home manager (see para 38); 215

5.112  Restraint and Deprivation of Liberty ●●

the right to challenge the authorisation before the Court of Protection (under MCA, s 21ZA, inserted by MC(A)A, s3); the right to be provided with a copy of the authorisation record without delay (para 16); and representation and/or being supported by either an ‘appropriate person’ or an Independent Mental Capacity Advocate (IMCA) when an authorisation is being proposed and while an authorisation is in place (Pt 5, Sch AA1).

●● ●●

5.113 ●● ●● ●● ●● ●●

An authorisation will cease to have an effect (para 29): at the end of 12 months or at the end of any shorter period determined by the responsible body; the responsible body believes or ought reasonably to suspect that any of the conditions for the authorisation are not met; if the authorisation is renewed,1 at the end of the renewal period; if the responsible body decides that the authorisation ceases to have effect from any earlier day; or if the arrangements are not in accordance with mental health requirements.

1 Pursuant to para 32 the responsible body may, on one or more occasions and subject to conditions in paras 34 and 35, renew an authorisation for a specified period of 12 months or less on the first renewal, and three years or less on any subsequent renewal.

5.114 Pursuant to Pt 7 patients detained under the MHA or who are objecting to detention for hospital assessment or treatment, cannot be made subject to an authorisation under Sch AA1 for the purposes of that treatment or assessment. In the community, a person could be subject to an authorisation under Sch AA1 and a community Mental Health Act power (for example guardianship or a Community Treatment Order), so long as the authorisation does not conflict with any requirement contained in the power.

F  PRACTICAL ISSUES 5.115 In recognition of the need for flexibility when dealing with human actions, the courts have not sought to be prescriptive as to precisely what degree of restraint can be used. The words of the Court of Appeal in Re MB (Medical Treatment) still hold true: ‘The extent of force or compulsion that may become necessary [in ensuring that medical treatment is provided to a mentally incapacitated patient] can only be judged in each individual case and by health professionals.’1 1

[1997] 2 FLR 426, CA at 439.

5.116 Whilst the court will not normally ‘micro-manage’ the use of restraint, before endorsing its use, the court (or at least the Official Solicitor or other litigation friend representing the patient) will usually require a comprehensive care plan to be provided, setting out the type of restraint that it is anticipated may have to be used and the practical arrangements in place to achieve the desired outcome by means of the least restrictive option. In situations where it is anticipated substantial or forceful restraint may be required, the court may take a more pro-active or intrusive approach. 216

Restraint and Deprivation of Liberty 5.118 W NHS Trust v P1 illustrates the close interest the court can take in the type and degree of restraint required. The court in P, granting authorisation for the medical treatment and restraint, stated the restraint authorised should be, ‘such minimum force as is reasonable and necessary in the circumstances in the event that P is not compliant with transportation or medical testing’ and set out in detail the precise restraint which was authorised. In addition, Cobb J required the NHS Trust to file and serve a use of handcuffs record sheet in accordance with the Trust’s policy document H5 ‘Handcuffs: A Forensic Services Policy’ within two weeks of the investigations, after which time the judge reviewed the case and, in particular, the restraint aspect, in accordance with good practice under Art 5 of the ECHR. 1

W NHS Trust v P [2014] EWHC 119 (COP).

5.117 Those wishing to carry out the restraint will need to demonstrate that they have considered issues such as whether sedation will be employed and how that sedation will be administered. On occasions where a patient does not comply with oral medication, covert sedation may be the best practicable method of achieving an admission to hospital without increasing the anxiety and distress of the patient.1 The care plan will also need to address issues such as who will provide the transport and the escorting staff to get a patient to hospital and back again, what type of restraint will be used and who exactly will provide it, the training those persons will have undergone, the policies in accordance with which the restraint will be used, what liaison there will be with the ambulance service, whether the police need to be warned that they will (or may) need to attend, whether carers with whom the patient is familiar will remain in attendance at the hospital throughout the admission, and what will be said to the patient at the various stages of the plan. On occasions where a patient may need one-toone supervision in hospital, the issues of the funding for the additional staff required may need clarification before the court will endorse the proposals. 1 See para 5.23 above.

5.118 In order properly to weigh up best interests it will often be necessary for the clinical witnesses and the independent experts to have considered the psychological impact upon the patient of being restrained: will it aggravate a pre-existing mental disorder? Will any distress caused be permanent or temporary? To what extent will the therapeutic relationship with the clinical team be damaged by forcible treatment? In some cases the proposed treatment may be given under the cover of medication (for example, Midazolam) which causes short periods of retrograde amnesia, thereby minimising the recollected trauma of any restraint.1 The impact of restraint is an issue that needs to be covered in the medical evidence.2 1 See para 5.23 above. 2 In A Local Authority v E [2012] EWHC 1639 (COP), the court found that the balance of best interests came down in favour of treatment against E’s wishes, notwithstanding that the ‘psychological impact of the proposed treatment upon E is of a different order to other cases. The treatment would not consist of a single operation or procedure, but a wholesale overwhelming of her autonomy for a long period whose exact length could only be measured in hindsight once it was known whether treatment had succeeded or failed.’ See, by contrast, Avon & Wiltshire Mental Health Partnership v WA [2020] EWCOP 37, for a case where the

217

5.118  Restraint and Deprivation of Liberty possible forms of restraint, and their impact, were considered in great detail in the context of a patient who had a background of suffering torture and abuse; ultimately in that case the court concluded that the authorisation of clinically assisted nutrition and hydration against WA’s will would be against his best interests.

5.119 The applicant (who will usually be an NHS body) will need to provide a draft order to the court which is as specific as possible as to the extent of restraint that will be used; usually, the best way of achieving this is to provide a detailed care plan which can be both authorised by the court and used in practice by clinicians.1 Invariably the court will require the order to include a paragraph reflecting that any restraint used will be the minimum practicable in the situation and delivered in such a way to ensure the patient suffers the least distress and retains the greatest dignity. In some cases it will be necessary for the order to identify the limits on the degree of restraint authorised.2 Such provisions are of particular benefit where the patient has sufficient understanding to be reassured by a court order confirming they will not be subject to a particular form of restraint. However, even where the court order is this prescriptive, it does not necessarily prevent the use of a greater degree of restraint that may be lawful under MCA s 6(7) for emergency treatment, pending the obtaining of a decision from the court. 1 In practice, this may not be as easy as it sounds, since a document drafted by lawyers may well be considered unworkable by clinicians. The authors recommend clinician involvement in such care plans to avoid the embarrassment of clinicians making unhelpful comments about Trust documents which they have not seen in oral evidence, as happened in one recent case of which the authors are aware. 2 As in W NHS Trust v P [2014] EWHC 119 (COP): see para 5.116 above; and Cambridge University Hospitals NHS Foundation Trust v GW [2021] EWHC 2105 (Fam), where restraint was authorised to deliver urgent treatment of GW’s self-harming wounds, but not for less urgent treatment nor for treatment for her multiple sclerosis.

G CONCLUSION 5.120 The issues surrounding restraint and deprivation of liberty can be complex, not least because of the challenges involved in first identifying whether a deprivation of liberty under Art 5 of the ECHR is likely to be occurring, and then attempting to disentangle the complex provisions of the MCA and its interaction with the MHA. The problems facing hospitals, local authorities and the courts were added to by the huge expansion in the scope of people to be regarded as being deprived of their liberty following the Cheshire West decision. The procedural problems raised are particularly acute in the context of social care, but the effect of Cheshire West has also been felt in the context of hospital treatment, partly as a consequence of the impact on available resources caused by that decision. Despite these problems, the Court of Appeal’s decision in Ferreira, that a patient in ICU will often not be regarded as being deprived of their liberty, is a step towards a more proportionate approach to the level of safeguard required where what is provided is essential and uncontroversial treatment to those who are acutely ill. The court will generally be more willing to authorise a deprivation of liberty on a ‘just in case’ basis in medical cases than in welfare cases (since it is not being asked to authorise a long term care plan). Whilst it is preferable for there to be certainty on the point as far as possible, this can be unrealistic in the 218

Restraint and Deprivation of Liberty 5.121 fast-moving medical context. This approach is also consistent with the policy reflected in Supreme Court’s judgment in Cheshire West: given the extreme vulnerability of persons lacking capacity, public policy points toward erring on the side of caution in deciding what constitutes a deprivation of liberty in their case. 5.121 The reported cases since Cheshire inevitably tend to relate to the more complex, controversial medical treatment decisions made. The body of case law hides the fact that most deprivations of liberty in the hospital setting can – and should – be managed under the DOLS regime with only a light touch from lawyers. However, hospitals and clinicians are routinely encouraged to ensure that applications for authorisation of a deprivation of liberty are made promptly, in anticipation of problems arising rather than in response to them. It is of course easy for lawyers and judges to give this advice. It may be that in some cases, a ‘wait and see’ approach means that a problem goes away before it is necessary to involve lawyers. However, when it does not, the urgency that results increases the risk of error, and in the long-term may lead to extra work and legal costs. Where problems are anticipated, it is always prudent to seek specialist advice sooner rather than later. Only time will tell, when or if the relevant provisions are brought into force, whether the LPS will bring about the radical change and the cheaper, less bureaucratic process envisaged by the Law Commission. Whatever changes are made, the fundamental need will remain to anticipate likely deprivations of liberty in advance and then take the necessary steps to ensure they are properly authorised.

For updating material and hyperlinks related to this chapter, see www.serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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Chapter 6

Going to Court

A Introduction  6.1 B Should you go to court?  6.2 Practice Guidance whether an application is necessary  6.5 Summary of what constitutes a deprivation of liberty  6.8 Key considerations before an application is made to the Court of Protection for adult patients  6.9 DNAR: specific issue  6.10 Key considerations before a court application is made for child patients (when the High Court is asked to exercise its inherent jurisdiction)  6.11 C Identifying the right court for medical treatment cases  6.13 Courts with jurisdiction to deal with medical treatment cases  6.13 The jurisdiction of the Court of Protection  6.14 Cases in which the Court of Protection lacks jurisdiction/cases which need to go to the High Court  6.15 16 to 17 year olds: overlap of the jurisdiction of the Court of Protection and the High Court  6.16 Different age cut-offs for different types of case  6.17 Summary  6.18 D Procedural points common to the Court of Protection and the High Court  6.19 Public law issues  6.19 The timing of proceedings  6.20 How urgent is it?  6.22 Who should bring proceedings?  6.23 What does the party bringing the proceedings want?  6.25 Participation of P (the patient)  6.26 Does the patient need to be a party to proceedings?  6.27 The patient’s views on participation, and meeting the judge  6.28 The Official Solicitor and CAFCASS  6.29 Documentation  6.31 Bundles  6.31 Orders and position statements  6.32 Hearings  6.33 Typing up the order  6.34

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6.1  Going to Court E

The Court of Protection  6.35 Location and judges  6.36 Sources of procedural rules and guidance  6.37 The court’s general approach  6.38 The court’s powers to make medical treatment decisions  6.39 Privacy and publicity – general issues  6.40 Court of Protection proceedings  6.41 Publication of judgments  6.42 Points to consider before starting proceedings  6.43 Pre-issue steps  6.43 Litigation friend  6.44 Is permission required?  6.47 Who should be named as respondents and who should be notified of the proceedings?  6.48 Level of judge  6.49 Starting proceedings – non-urgent  6.50 How are proceedings started?  6.50 Starting proceedings – urgent  6.52 First hearing and subsequent directions hearings  6.58 Final hearings  6.59 Costs  6.60 Costs of Official Solicitor  6.61 Appeals  6.62 F The High Court’s jurisdiction in relation to minors  6.63 The High Court generally  6.63 The High Court’s jurisdiction  6.63 Regional hearings  6.64 Procedure and rules  6.65 What cases should be brought to court?  6.66 General issues  6.66 Parental issues  6.68 Local authority issues  6.69 Imposing treatment despite competent refusal  6.70 Who should be the respondents?  6.75 Body responsible for treatment or care  6.75 The child?  6.76 Parents?  6.77 Local authority  6.78 Starting proceedings – non-urgent  6.79 Starting proceedings – urgent  6.81 Privacy and publicity  6.82 First hearing and subsequent directions hearings  6.83 What to expect at a final hearing  6.84 Costs  6.86 Appeals  6.87 G  The High Court’s inherent jurisdiction in relation to ‘vulnerable adults’  6.88 H Conclusion  6.89

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Going to Court 6.2

A  INTRODUCTION 6.1 This chapter provides guidance on procedure and practice for those taking a medical treatment case to court or considering doing so, or who find themselves involved in proceedings. It addresses the procedural issues which arise most frequently. References to legislation and other source material should assist those requiring guidance in more unusual situations. Section B provides guidance on whether a case should be taken to court; section C offers help in identifying the right court and jurisdiction; generic procedural points are dealt with in section D; and procedural points specific to the different courts and jurisdictions are then dealt with in sections E, F and G. Concluding thoughts are set out in section H.

B  SHOULD YOU GO TO COURT? 6.2 Before starting court proceedings, it is important to first consider whether this is necessary, having regard to s 5 of the Mental Capacity Act 2005 (‘MCA’). The aim of s 5 of the MCA was to reflect the common law doctrine of necessity,1 which enabled decisions to be taken for people without capacity, without recourse to the courts. It does not create a new power to act, but provides protection from civil or criminal liability so long as the treatment itself is provided in the person’s best interests and without negligence. No authority of the court is required for a clinician to rely upon s 5 of the MCA which, as stated by Lady Hale in N v ACCG: ‘gives a general authority, to act in relation to the care or treatment of P, to those caring for him who reasonably believe both that P lacks capacity in relation to the matter and that it will be in P’s best interests for the act to be done.’2 Lady Hale continued: ‘This will usually suffice, unless the decision is so serious that the court itself has said it must be taken to court. But if there is a dispute (or if what is to be done amounts to a deprivation of liberty for which there is no authorisation under the “deprivation of liberty safeguards” in Schedule A1 to the 2005 Act) then it may be necessary to bring the case to court’.3 Where a person lacks capacity and does not comply with medical treatment being offered in their best interests, then restraint can be lawfully employed absent any court order in a number of situations. Primarily, necessary and proportionate restraint, that does not amount to a deprivation of liberty, will be lawful pursuant to s 5 of the MCA if administered in accordance with the express limitations upon s 5 powers that are set out within s 6 of the MCA: ‘(1) If D does an act that is intended to restrain P, it is not an act to which section 5 applies unless two further conditions are satisfied. ‘(2) The first condition is that D reasonably believes that it is necessary to do the act in order to prevent harm to P.

223

6.2  Going to Court ‘(3) ‘(4)

1 2 3 4

The second is that the act is a proportionate response to (a) the likelihood of P’s suffering harm, and (b) the seriousness of that harm. For the purposes of this section D restrains P if he (a) uses, or threatens to use, force to secure the doing of an act which P resists, or (b) restricts P’s liberty of movement, whether or not P resists.’4

See Chapter 3: Deciding for Others – Adults at para 3.11. N v ACCG [2017] AC 549 at para 38. Ibid, para 38. See Chapter 5: Restraint and Deprivation of Liberty at paras 5.8–5.10.

6.3 There are also various common law and other legal powers that permit proportionate restraint for short periods in an emergency which apply whether or not the patient lacks capacity to make decisions herself. These include the common law doctrine of necessity, s 3(1) of the Criminal Law Act 1967 (which permits a person to use reasonable force in the prevention of a crime), and a general common law power to take such steps as are reasonably necessary and proportionate to protect oneself or others from the imminent risk of significant harm.1 Also a common law power enabling citizens to prevent a breach of the peace,2 a common law power permitting the detention of those who are a danger or potential danger to themselves or others, in so far as this was shown to be necessary,3 and a common law power of a private individual to detain in a situation of necessity, a person of unsound mind who is a danger to themselves or others.4 Additionally, in Wintwerp v Netherlands5 and X v UK,6 the European Court of Human Rights confirmed the detention of a person for a short period in an emergency does not involve a violation of Art 5 of the ECHR (right to liberty). However generally these short-term powers do not permit a deprivation of liberty other than for a transient period whilst the immediate danger or risk is managed or averted.7 1 2 3 4 5 6 7

Munjaz v Mersey Care NHS Trust [2004] 2 QB 395 at para 46 and in the House of Lords at [2006] 2 AC 148 at para 125. For what remains of the common law of necessity, see Chapter 3: Deciding for Others – Adults at para 3.11. R (on the application of Laporte) v CC of Gloucestershire Constabulary [2006] UKHL 55. R v Bournewood NHS Trust Ex p L (1998) 3 All ER 289 (HL). Black v Forsey [1988] SLT 57 (HL). [1979] ECHR 4. [1981] ECHR 6. But see also ZH v The Commissioner of Police for the Metropolis [2012] EWHC 604 (QB) and Chapter 3: Deciding for Others – Adults at para 3.11 and Chapter 5: Restraint and Deprivation of Liberty at para 5.67.

6.4 It is also important to note that the settled position following the Court of Appeal decision in Burke v General Medical Council1 is that the court will not authorise treatment which would otherwise be unlawful, and neither a patient nor their family can require a doctor to administer treatment which that doctor does not consider to be clinically indicated.2 1 2

[2005] EWCA Civ 1003. See s 24 of the MCA and Chapter 2: Consent & Capacity: Adults at para 2.26.

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Going to Court 6.6

Practice Guidance whether an application is necessary 6.5 Practice Guidance to assist practitioners was authorised by Mr Justice Hayden, Vice President of the Court of Protection, in January 2020.1 This guidance sets out the procedure to be followed where a decision relating to medical treatment arises and where thought needs to be given to bringing an application before the Court of Protection. The procedure is currently being reviewed within the revised MCA Code and the Practice Guidance is intended to operate until such time as it is superseded by the revised Code. It replaces Practice Direction E to Pt 9 of the Court of Protection Rules 2007. The 2020 Practice Guidance should always be read prior to issuing an application, and in our experience, the court is assisted (particularly in borderline cases) by the applicant citing the particular paragraph number(s) of the Practice Guidance relied upon. For example, within the application form or position statement it can be stated that: ‘… this application is made in accordance with [for example] paragraph 12 of the Practice Guidance as the proposed treatment is to be carried out using a degree of force to restrain the person concerned and the restraint may go beyond the parameters set out in s.5 and s.6 Mental Capacity Act 2005. As the restraint will amount to a deprivation of P’s liberty, an order of the court is required to make the deprivation of liberty lawful.’ The Practice Guidance confirms that the fact that certain medical treatments are defined as ‘serious’2 does not determine whether they should be subject to an application to the Court of Protection. Rather they indicate the need for special care and attention to the decision-making process surrounding them, including the appointment of an Independent Mental Capacity Advocate in appropriate circumstances.3 1 2 3

Applications Relating to Medical Treatment [2020] EWCOP 2, see bit.ly/VP-Guide-Jan-20. For the purposes of s 37(6) of the MCA. King’s College Hospital NHS Foundation Trust v FG [2019] EWCOP 7 at para 24, per Francis J.

6.6 Importantly, para 6 of the Practice Guidance emphasises that if the provisions of the MCA are followed, any relevant professional guidance is observed and the relevant guidance in the Code of Practice also followed, including as to the undertaking of the decision-making process, then, if there is agreement at the end of the decision-making process as to: (i) the decisionmaking capacity, and (ii) the best interests of the person in question, in principle, medical treatment may be provided to, withdrawn from or withheld in accordance with that agreement, without application to the court (in reliance upon the defence in s 5). Paragraphs 8–13 of the Practice Guidance are essential reading and are set out fully below: ‘Situations where consideration should be given to bringing an application to court ‘8. If, at the conclusion of the medical decision-making process, there remain concerns that the way forward in any case is: (a)  finely balanced, or (b) there is a difference of medical opinion, or

225

6.6  Going to Court (c) a lack of agreement as to a proposed course of action from those with an interest in the person’s welfare, or (d) there is a potential conflict of interest on the part of those involved in the decision-making process (not an exhaustive list). Then it is highly probable that an application to the Court of Protection is appropriate. In such an event consideration must always be given as to whether an application to the Court of Protection is required. ‘9. Where any of the matters at paragraph 8 above arise and the decision relates to the provision of life-sustaining treatment an application to the Court of Protection must be made. This is to be regarded as an inalienable facet of the individual’s rights, guaranteed by the European Convention on Human Rights (‘ECHR’). For the avoidance of any doubt, this specifically includes the withdrawal or withholding of clinically assisted nutrition and hydration. ‘10. In any case which is not about the provision of life-sustaining treatment, but involves the serious interference with the person’s rights under the ECHR, it is “highly probable that, in most, if not all, cases, professionals faced with a decision whether to take that step will conclude that it is appropriate to apply to the court to facilitate a comprehensive analysis of [capacity and] best interests, with [the person] having the benefit of legal representation and independent expert advice” (Re P (Sexual Relations and Contraception) [2018] EWCOP 10, concerning the covert insertion of a contraceptive device). This will be so even where there is agreement between all those with an interest in the person’s welfare. ‘11. Examples of cases which may fall into paragraph 10 above will include, but are not limited to: a. where a medical procedure or treatment is for the primary purpose of sterilisation; b. where a medical procedure is proposed to be performed on a person who lacks capacity to consent to it, where the procedure is for the purpose of a donation of an organ, bone marrow, stem cells, tissue or bodily fluid to another person; c. a procedure for the covert insertion of a contraceptive device or other means of contraception; d. where it is proposed that an experimental or innovative treatment to be carried out; e.  a case involving a significant ethical question in an untested or controversial area of medicine. ‘12. Separately to the matters set out above, an application to court may also be required where the proposed procedure or treatment is to be carried out using a degree of force to restrain the person concerned and the restraint may go beyond the parameters set out in sections 5 and 6 Mental Capacity Act 2005. In such a case, the restraint will amount to a deprivation of the person’s liberty and thus constitute a deprivation of liberty (ACCG v MN [2017] UKSC 22 at paragraph 38). The authority of the court will be required to make this deprivation of liberty lawful. ‘13. It requires to be stated clearly that those providing or commissioning clinical and caring services should approach the Court of Protection in any case in which they assess it as right to do so.’ (Emphasis in original) 226

Going to Court 6.8 Paragraph 8 of the Practice Guidance is predominantly lifted from the judgment of Lady Black in NHS Trust v Y:1 ‘If, at the end of the medical process, it is apparent that the way forward is finely balanced, or there is a difference of medical opinion, or a lack of agreement to a proposed course of action from those with an interest in the patient’s welfare, a court application can and should be made. As the decisions of the European court underline, this possibility of approaching a court in the event of doubts as to the best interests of the patient is an essential part of the protection of human rights. The assessments, evaluations and opinions assembled as part of the medical process will then form the core of the material available to the judge, together with such further expert and other evidence as may need to be placed before the court at that stage.’ 1

NHS Trust v Y [2018] UKSC 46 at para 125.

6.7 The rationale for the need for court oversight in cases of covert contraception was explained by Baker J in Re P (Sexual Relations and Contraception):1 ‘the covert provision of medication to an incapacitated adult is always an interference with personal autonomy and thus a very significant step. The covert insertion of a contraceptive IUD is, arguably, an even more serious interference with an individual’s personal autonomy and Article 8 rights … Given the serious infringement of rights involved in the covert insertion of a contraceptive device, it is in my judgement highly probable that, in most, if not all, cases, professionals faced with a decision whether to take that step will conclude that it is appropriate to apply to the court to facilitate a comprehensive analysis of best interests, with P having the benefit of legal representation and independent expert advice.’ Although perhaps obvious, in addition to the above, if there is a question regarding P’s capacity to make the treatment decision in question, the court should be asked to determine that issue and make a declaration under s 15 of the MCA that they have, or lack capacity regarding the proposed treatment or procedure.2 1 2

A Local Authority v P & The NHS Trust [2018] EWCOP 10, [2019] COPLR 44 at para 56 and see also Chapter 10: Sterilisation and contraception at para 10.9. A Local Authority v X (No 2 Declaration that X has capacity) [2016] EWCOP 50.

Summary of what constitutes a deprivation of liberty 6.8 For the purposes of Art 5 of the ECHR (and for the purposes of para 12 of the Practice Guidance), what constitutes a deprivation of liberty was addressed by Lady Hale in P v Cheshire West as follows:1 ‘(a) the objective component of confinement in a particular restricted place for a not negligible length of time; (b) the subjective component of lack of valid consent; and (c) the attribution of responsibility to the state …’ Cheshire West related to a deprivation of liberty in a long-term social care setting. Its application to potential deprivations of liberty in the course of

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6.8  Going to Court physical hospital treatment was considered (in part) by the Court of Appeal in Ferreira.2 In particular, Lady Justice Arden held that: ‘… any deprivation of liberty resulting from the administration of lifesaving treatment to a person falls outside Article 5(1) (as it was said in Austin) “so long as [it is] rendered unavoidable as a result of circumstances beyond the control of the authorities and is necessary to avert a real risk of serious injury or damage, and [is] kept to the minimum required for that purpose”. In my judgment, what these qualifications mean is in essence that the acute condition of the patient must not have been the result of action which the state wrongly chose to inflict on him and that the administration of the treatment cannot in general include treatment that could not properly be given to a person of sound mind in her condition according to the medical evidence. ‘An example of a case where authorisation for a deprivation of liberty will be necessary is NHS Trust I v G,[3] where a hospital considered that it might have to give obstetric care to a pregnant woman of unsound mind who objected to such treatment. Keehan J made an order authorising a deprivation of liberty and invasive medical treatment on a precautionary basis. The pregnant woman in question was to be prevented from leaving the delivery suite and might be compelled to submit to invasive treatment, such as a Caesarean section. If these steps had to be taken, the treatment would be materially different from that given to a person of sound mind. By contrast, I do not consider that authorisation would be required because some immaterial difference in treatment is necessitated by the fact that the patient is of unsound mind or because the patient has some physical abnormality. ‘In reaching this conclusion I accept the submission that Cheshire West is distinguishable since it is directed to a different situation, namely that of living arrangements for persons of unsound mind. In addition, I have not identified any guidance in it as to the position with regard to Article 5 in the urgent or intensive care context. ‘I also accept the submission that the policy reasons for finding a violation in Cheshire West do not apply in this case. There is in general no need in the case of physical illness for a person of unsound mind to have the benefit of safeguards against the deprivation of liberty where the treatment is given in good faith and is materially the same treatment as would be given to a person of sound mind with the same physical illness. The treatment is neither arbitrary nor the consequence of her impairment. This analysis is supported by the approach of the majority of the Strasbourg Court in Nielsen v Denmark.[4] The majority held that there was no deprivation of liberty because the treatment would have been the same if the applicant had been treated on another ward for his physical illness. ‘In addition, in my judgment, Article 5(1)(e) is directed to the treatment of persons of unsound mind because of their mental impairment. The purpose of Article 5(1)(e) is to protect persons of unsound mind. This does not apply where a person of unsound mind is receiving materially the same medical treatment as a person of sound mind. Article 5(1)(e) is thus not concerned with the treatment of the physical illness of a person of unsound mind. That is a matter for Article 8. Where life-saving treatment is given to a person of sound mind, the correct analysis in my judgment is that the 228

Going to Court 6.9 person must have given consent, or the treating doctors must be able to show that their actions were justified by necessity or under section 5 of the MCA. If this cannot be shown, then there has to be some method of substituted decision-making, such as obtaining an order from the Court of Protection’.5 From the above, it is apparent that each case will need to be determined upon its unique facts, but a key factor (as regards the necessity of an application) is whether any treatment imposed upon P (including the use of anaesthesia, for example) is likely to be analogous to the care and treatment given to a patient who has capacity. If the content of the care/treatment plans are materially the same (between the capacitous and incapacitous patient), an application is unlikely to be necessary on the basis of Art 5 considerations. There may of course be other reasons why an application is necessary (if there is a dispute as to best interests, etc). 1 2 3 4 5

[2014] UKSC 19 at para 37. R (on the application of Ferreira) v HM Senior Coroner for Inner South London [2017] EWCA Civ 31. [2015] 1 WLR 19844, 10929/84 [1988] ECHR 23. (1988) 11 EHRR 175. R (on the application of Ferreira) v HM Senior Coroner for Inner South London [2017] EWCA Civ 31 at paras 89–96. And see Chapter 5: Restraint and Deprivation of Liberty at paras 5.67–5.69.

Key considerations before an application is made to the Court of Protection for adult patients 6.9 The key considerations before an application is made to court are as follows: (1)

Is there evidence that the patient lacks capacity to make the treatment decision in question? (2) (if not) Is this an exceptional case where the court should be asked to make a contingent declaration under s 15(1)(c) of the MCA that it is lawful to treat in accordance with the proposed treatment plan in the event that they come to lack capacity at the relevant time?1 (3) (if the person lacks capacity) Has a valid advance decision to refuse the treatment in question been made?2 If a valid advance decision applicable to the treatment has been made (fulfilling all of the requirements for validity set out in s 25 of the MCA), then this can be relied upon. There is no need to go to court to decide an issue already decided by a valid advance decision. It is important, however, that careful consideration is given to the various requirements of s 25 of the MCA. If there is doubt as to whether the advance decision is valid or applicable, the issue should usually be litigated. (4) Does the person have a health and welfare attorney or health and welfare deputy? If so, consideration should be given to whether they have the right to make the decision in question. In our experience, if a deputy or attorney appointed to make health and welfare decisions objects to a treatment decision which is clinically considered to be in a person’s best interests, this will still require a court application and determination by the court. In addition to making standard declarations and orders, in such an application, the court may also need to consider 229

6.9  Going to Court

(5)

(6)

(7)

(8)

framing the order either pursuant to s 23(2)(b) of the MCA (the power of the court to give consent to act which the donee would have to obtain from P if P had capacity to give it) or s 16(8) of the MCA (which varies the power of the deputy to make decisions on behalf of P) dependent on whether a LPA or deputyship order is in place. Ultimately this relates to the court becoming the ‘decision maker’ in place of the attorney or deputy in the event of a dispute. What are the wishes and feelings of the person concerned? It is essential that the patient is informed of the proposed procedure/surgery unless there is specific evidence (usually psychiatric evidence) that informing P would not be in their best interests. There are no rules or specific guidance to follow regarding covert care planning and the court must determine the matter on a case by case basis.3 It should always be remembered that the covert provision of treatment to an incapacitated adult is an interference with their personal autonomy and therefore a very significant step.4 The withholding of information must be justified by the benefits that it would bring; usually the benefit of implementing the proposed treatment plan which is necessary for the patient’s health more easily and so with less distress to P.5 It will be rare situations where withholding information from P is justified, particularly when ascertaining P’s wishes and feelings is such an important component to be taken into account in the balancing exercise, to the extent that they are reasonably ascertainable. Additionally, P’s beliefs and values may in some cases be of relevance (for example, the withholding of blood products from patients who are Jehovah’s Witnesses). P’s wishes and feelings, and values and beliefs should be included in the clinical records each time they are ascertained, as they may change over a period of time, and any change would be a relevant consideration for the court when considering the strength and consistency of P’s stated position. Has a best interests meeting taken place? There is no set process for ascertaining best interests, and the degree and extent of consultation (which is required under s 4 of the MCA) will depend on the facts of a particular case. In many cases, holding a multi-disciplinary ‘best interests meeting’ will be the appropriate forum for that consultation. This can include a meeting taking place in person, remotely (by Microsoft Teams, etc), by email communication or a hybrid of those formats. The key is that the views of the persons listed in s 4(7) of the MCA are obtained if it is practicable and appropriate to do so. This includes family members, friends, carers (etc). It should also include the views of an IMCA6 or any other advocate involved in the patient’s care. Family members often have very helpful information regarding the patient’s background which is not known to the treating clinicians (for example, past expressions of what they may have wanted), and this is all relevant information to be discussed at the meeting. It may be that more than one best interests meeting is needed. Minutes of any meetings should be taken. In cases involving a real emergency, it may not be possible for a formal meeting to take place; however, it is likely that an explanation would need to be provided to the court in such instance. Conclusions arising from the best interests consultation: Once all viewpoints have been ascertained, the necessity or otherwise of an 230

Going to Court 6.11

(9)

1 2 3 4 5 6

7

application should be considered; the Practice Guidance should be used as a benchmark when making that decision. Mediation? In some cases, it may be appropriate to consider mediation, whether formally provided by a trained mediator, or informally and provided by a clinician or other person not involved in the patient’s care.7 If the content of treatment plan constitutes or is likely to constitute a deprivation of the patient’s liberty, the authority of the court is likely to be required to make the deprivation of liberty lawful, but a mediated solution would still reduce the time required for preparation and hearing at court.

GSTT & SLAM v R [2020] EWCOP 4, and see also Chapter 2: Consent & Capacity: Adults at para 2.23; Chapter 12: Managing Pregnancies at para 12.22. See s 24 of the MCA and Chapter 2: Consent & Capacity – Adults at paras 2.32–2.38. King’s College Hospital NHS Foundation Trust v FG [2019] EWCOP 7 at para 24, per Francis J. See Chapter 3: Deciding for Others – Adults at paras 3.34–3.38. Re P [2018] EWCOP 10 at paras 59 and 62, per Baker J, AG v BMBC [2016] EWCOP 37 at para 25. See Chapter 3: Deciding for Others – Adults at paras 3.34–3.35. An NHS Trust v JP [2019] EWCOP 23 at para 38, per Williams J, and United Lincolnshire Hospitals NHS Foundation Trust v Q [2020] EWCOP 27 at para 24, per Knowles J. For the purposes of s 37(3); the requirement does not apply if the proposed treatment is regulated by Pt 4 or 4A of the Mental Health Act (MCA s 37(2)) or, if the treatment needs to be provided as a matter of urgency (MCA s 37(4)), but if there is time to make a court application it is unlikely that not attempting to instruct an IMCA could be justified on grounds of urgency. Mediation has been successfully used in many medical cases, including disputes between the parents of a child requiring treatment and disputes between clinicians and family members. Informal mediation by an independent expert has also been very successful. See Chapter 15: Withdrawal and Withholding Treatment at para 15.85.

DNAR: specific issue 6.10 Where it is proposed that a ‘Do Not Attempt Resuscitation’ (DNAR) notice is to be placed in a patient’s hospital records, there is a presumption in favour of involving the patient in this decision, which can only be rebutted by convincing reasons.1 Where a patient lacks capacity and a DNAR is proposed, it follows that the patient may have relevant wishes and feelings that should be taken into account. The family or interested persons should also be consulted.2 If there is any dispute as to the appropriateness of placing a DNAR notice on the patient’s records, the matter should be brought before a court. 1 2

R (on the application of Tracey) v Cambridge University Hospitals NHS Foundation Trust [2014] EWCA Civ 822 (a decision involving the same parties as the earlier Court of Appeal decision in Tracey, op cit). Winspear v City Hospitals Sunderland NHS Foundation Trust [2015] EWHC 3250 (QB). See Chapter 7: Access to Healthcare – Choice at para 7.21.

Key considerations before a court application is made for child patients (when the High Court is asked to exercise its inherent jurisdiction) 6.11 (1)

Is there evidence that the child is able to make the treatment decision in question? If younger than 16 years of age, this is referred to as Gillick competence,1 and if over the age of 16, the child patient is presumed to have legal competence to consent to the proposed 231

6.11  Going to Court

(2)

(3)

(4) (5)

1 2

3 4 5 6

treatment2 and is presumed to have the mental capacity3 to make treatment decisions unless it is shown that they lack capacity.4 What are the wishes and feelings of the child concerned? Even if the child is competent/capacitous to make the decision in question, the court, in the exercise of its inherent parens patriae or wardship jurisdiction, can in an appropriate case, overrule the child’s decision, either vetoing some procedure to which the child has consented or directing that the child should undergo some procedure to which the child is objecting. Although their wishes are important, they are not necessarily determinative.5 Additionally, even if a child is Gillick competent, their parents retain parental responsibility in law and the rights and duties that go with that. One of those duties is to make a decision as to consent in medical treatment cases where the child cannot do so. The parent cannot use that right to trump the child’s decision to accept treatment, but if the child fails to make a decision then the parent’s ability to do so continues.6 Has a best interests meeting taken place? There is no set process for ascertaining best interests and the degree and extent of consultation will depend on the facts of a particular case. In many cases holding a multi-disciplinary ‘best interests meeting’ will be the appropriate forum for that consultation but it will depend on the facts of a particular case. This can include a meeting taking place in person, remotely (by Microsoft Teams, etc), by email communication or a hybrid of those formats with family members, friends, carers (etc). It may be that more than one best interests meeting is needed. Minutes of any meetings should be taken. In cases involving a real emergency, it may not be possible for a formal meeting to take place, however it is likely that an explanation would need to be provided to the court in such instance. Conclusions arising from the best interests meeting: Once all viewpoints have been ascertained, the necessity or otherwise of an application should be considered. Mediation? In some cases, it may be appropriate to consider mediation, whether formally provided by a trained mediator, or informally and provided by a clinician or other person not involved in the patient’s care.7 If, however, the content of treatment plan constitutes or is likely to constitute a deprivation of the patient’s liberty, the authority of the court is likely to be required to make the deprivation of liberty lawful. The court (in exercise of its inherent jurisdiction) has the power to authorise the use of restraint and physical force to compel a child to submit to a surgical procedure.8

Gillick v West Norfolk and Wisbech Health Authority [1986] AC 112. See Chapter 4: Deciding for Others – Children. Family Law Reform Act 1969, s 8: ‘The consent of a minor who has attained the age of sixteen years to any surgical, medical or dental treatment which, in the absence of consent, would constitute a trespass to his person, shall be as effective as it would be if he were of full age; and where a minor has by virtue of this section given an effective consent to any treatment it shall not be necessary to obtain any consent for it from his parent or guardian’. MCA, s 1(2). In accordance with s 2(1) and s 3(1) of the MCA. Re X (No 2) [2021] EWHC 65 (Fam). AB v CD [2021] EWHC 741 (Fam), Lieven J at paras 68 and 114 concluded that the parents’ right to consent to treatment on behalf of the child continues even when the child is Gillick competent to make the decision, save where the parents are seeking to override the decision of the child. The judgment does not specifically address what should happen where the

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7 8

views of the Gillick competent child differ from the view of the parent (who retains parental responsibility) to consent to treatment decisions. In our view, such a dividing view (between parent and child) would necessitate a court application. See Chapter 4: Deciding for Others – Children at para 4.14. Mediation has been successfully used in cases of dispute between the parents of a child requiring treatment. Informal mediation by an independent expert has also been very successful. See Chapter 4: Deciding for Others – Children at para 4.20. Re C (Detention: Medical Treatment) [1997] 2 FLR 180, Re PS (Incapacitated or Vulnerable Adult) [2007] EWHC 623 (Fam), Re X (No 2) [2021] EWHC 65 (Fam).

6.12 For cases involving children, although there is no comparable Practice Guidance to consider, it is a useful benchmark to utilise paras 8–13 of the Practice Guidance, where necessary. However, as emphasised by Mrs Justice Lieven, the Practice Guidance exposes the critical difference between incapacitated adults and children, as: ‘For children their parents would normally be in a legal position to consent to treatment on their behalf. For incapacitated adults there is no such person and therefore the State has a protective function and the Court has a different legal role. The Court is not displacing some other person, namely the parents, with statutory and moral rights and duties … parents will, in the vast majority of cases, be the people who know their children best and who are best placed to make decisions about them. I agree with the view expressed that judges do not necessarily know best, and that judges should be slow to displace the decision making role of committed and loving parents.’1 1

AB v CD [2021] EWHC 741 (Fam) at paras 117–118.

C  IDENTIFYING THE RIGHT COURT FOR MEDICAL TREATMENT CASES Courts with jurisdiction to deal with medical treatment cases 6.13 ●● ●● ●● 1

Medical treatment decisions can be made by: The Court of Protection; The High Court under its inherent jurisdiction in relation to minors (or less commonly, its statutory jurisdiction under s 8 of the Children Act 1989); The High Court under its inherent jurisdiction in relation to ‘vulnerable adults’, although its use is likely to be rare.1

See Chapter 3: Deciding for Others – Adults at paras 3.42–3.44. The key cases are Re SA (Vulnerable Adult with Capacity: Marriage) [2006] 1 FLR 867 per Munby J as confirmed by the Court of Appeal in DL v A Local Authority [2012] EWCA Civ 253. The inherent jurisdiction can be exercised in relation to a vulnerable adult who, even if not incapacitated by mental disorder, is (for example) either under constraint, subject to coercion or undue influence or otherwise deprived of the capacity to make the relevant decision, disabled from making a free choice, or incapacitated from giving or expressing a real and genuine consent. It can also be used where declarations of lawfulness are sought as regards treatment under s 63 of the MHA: see A Healthcare and B NHS Trust v CC [2020] EWHC 574 (Fam) and A Local Health Board v JK [2019] EWHC 67 (Fam) (for example), or because the treatment requires the patient to be deprived of his liberty and they are ineligible under Sch 1A to the MCA (A NHS Trust v Dr A [2013] EWCOP 2442), or for making an order contingent on loss of capacity authorising a deprivation of liberty.

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6.14  Going to Court

The jurisdiction of the Court of Protection 6.14 Section 45 of the MCA establishes a specialist court, the Court of Protection, which on 1 October 2007 assumed jurisdiction to deal with many of the medical treatment cases which had previously been heard only in the Family Division of the High Court. The Court of Protection has jurisdiction to hear medical treatment cases relating to people – referred to in the language of the MCA as ‘P’1 – where two conditions are met: ●●

P is aged 16 or over. A general minimum age for the exercise of the court’s jurisdiction is not set out expressly in the Act. While s 2(5) of the MCA states that no ‘power which a person (‘D’) may exercise under this Act … is exercisable in relation to a person under 16’, the power of the court to take action is not expressly limited in this way. However, it is well understood in practice that the Court of Protection does not have the power to make personal welfare decisions, including medical treatment decisions, in relation to people aged under 16. This finds support in the Explanatory Note to the Act,2 implicitly in the Act itself,3 and in the main Code of Practice.4

and ●●

1 2 3

4

5

6

There is a justiciable issue regarding P’s mental capacity under the MCA. The Court of Protection’s jurisdiction is not limited to cases in which the applicant asserts that the patient lacks (or may lack) capacity. It also has jurisdiction to hear an application brought by a patient (or other properly interested person) who contends that they have capacity, in circumstances, for example, where medical treatment decisions are being taken by others on the basis that they lack capacity.5 It is the dispute regarding P’s capacity which triggers the court’s jurisdiction. The court can also determine the validity and applicability of advanced decisions to refuse treatment and, in limited circumstances, applications can be brought where there is evidence that the person is likely to lose capacity in the future, but decisions about the treatment that might then be provided need to be made before capacity is lost.6 MCA, s 16. Para 24 of the Explanatory Note: ‘Subsection (5) makes it clear that powers under the Act generally only arise where the person lacking capacity is 16 or over …’. For example the need for the exception in s 18(3): ‘The powers under section 16 as respects any other matter relating to P’s property and affairs may be exercised even though P has not reached 16, if the court considers it likely that P will still lack capacity to make decisions in respect of that matter when he reaches 18.’ For example, para 8.1 refers to the setting up of the Court of Protection ‘to deal with decisionmaking for adults (and children in a few cases) …’; and the beginning of Chapter 12 states: ‘The Act does not generally apply to people under the age of 16.’ See CHAPTER 4: Deciding for Others – Children at PARA 4.3. For example MCA, s 15(1): ‘The court may make declarations as to – (a) whether a person has or lacks capacity to make a decision specified in the declaration; (b) whether a person has or lacks capacity to make decisions on such matters as are described in the declaration;’ and the main Code of Practice para 8.7: ‘a person wishing to challenge a finding that they lack capacity may apply to the court.’ Such ‘contingent’ or anticipatory declarations have mostly been made in obstetric cases – see for example GSTT & SLAM v R [2020] EWCOP 4, and see also CHAPTER 2: Consent and Capacity at PARA 2.23; CHAPTER 12: Pregnancy and Childbirth at PARA 12.22.

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Going to Court 6.15

Cases in which the Court of Protection lacks jurisdiction/ cases which need to go to the High Court 6.15 The Court of Protection has no jurisdiction to hear cases about medical treatment decisions relating to the following categories of people: ●● ●●

1 2

3

People under 16 years old. Such cases must be heard by the Family Division of the High Court exercising its inherent jurisdiction in relation to minors or its jurisdiction under s 8 of the Children Act 1989.1 People aged 16 or over who are not said to lack capacity under the MCA. This category can be sub-divided as follows: –– Cases concerning young people aged 16 and 17 who are not said to lack capacity under the MCA. These cases must also be heard by the Family Division of the High Court exercising its inherent jurisdiction in relation to minors or its jurisdiction under s 8 of the Children Act 1989. There are two categories of case in which a court application might be necessary: first, if seeking to override a capacitous decision about treatment; secondly, in cases of dispute.2 –– Cases concerning people aged 18 or over who are not said to lack capacity under the MCA. Save where there is an issue regarding contingent declarations under MCA,3 these cases can only be heard by a judge of the High Court exercising that court’s inherent jurisdiction, in this case in respect of capable but vulnerable adults. These cases must also be heard in the Family Division.4 The most common basis to make an application under this jurisdiction is where the person concerned has capacity to make the decision but is unable to exercise such capacity because of the undue influence exerted over them by another person. While this is a jurisdiction occasionally invoked in respect of welfare decisions, applications in respect of medical treatment are likely to be rare. –– The Court of Protection has no jurisdiction to make a decision about treatment which a person lacking capacity could not make for himself. An application for a declaration that it is lawful to withhold treatment notwithstanding the existence of powers under s 63 of the Mental Health Act 1983 (‘MHA’) should accordingly also be made in the High Court.5 –– If an incapacitous patient will be deprived of their liberty (including their residual liberty6) in order to provide the proposed treatment and is ineligible to be deprived of their liberty under MCA Sch 1A, the Court of Protection cannot authorise the deprivation of liberty and the High Court’s inherent jurisdiction will be required to give such authorisation.7 See CHAPTER 4: Deciding for Others – Children. See CHAPTER 4: Deciding for Others – Children. Whether the relief sought should be framed as a declaration under the inherent jurisdiction or a specific issue order is fact specific. In Re JM (A Child) [2015] EWHC 2832 (Fam), Mr Justice Mostyn at para 24 stated that ‘In my opinion a question of whether a medical procedure should be forced on a 16 or 17 year old should be sought solely under the High Court’s inherent jurisdiction, and not under the Children Act.’ See also Re X (No 2) [2021] EWHC 65 (Fam) at para 33. GSTT & SLAM v R [2020] EWCOP 4, and see also CHAPTER 2: Consent & Capacity: Adults at PARA 2.23; CHAPTER 12: Pregnancy and Childbirth at PARAS 12.22–12.23.

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6.15  Going to Court 4

5 6 7

The President’s Guidance, dated 24 May 2021: ‘Jurisdiction of the family court: allocation of cases within the family court to High Court judge level and transfer of cases from the family court to the High Court’ specifies that all applications for Declaratory Relief must be heard in the Family Division: see bit.ly/Pres-alloc-24-05-21. Nottinghamshire Healthcare NHS Trust v RC [2014] EWHC 1317 (COP), A Healthcare and B NHS Trust v CC [2020] EWHC 574 (Fam), and A Local Health Board v JK [2019] EWHC 67 (Fam). Munjaz v UK (Application No 2913/06) [2012] ECHR 1704. MCA, s 16A(1) and see A NHS Trust v Dr A [2013] EWCOP 2442 (see Chapter 5: Restraint and Deprivation of Liberty, paras 5.6, 5.7, 5.12, 5.28).

16 to 17 year olds: overlap of the jurisdiction of the Court of Protection and the High Court 6.16 In relation to medical treatment decisions concerning persons aged 16 or 17, the Court of Protection and the High Court both have jurisdiction and the applicant must choose in which court to issue proceedings. The key issue is usually whether the person has or lacks capacity to make the treatment decision within the meaning of the MCA. If they lack capacity, the appropriate jurisdiction is likely to be the Court of Protection. If they have capacity, the appropriate jurisdiction is likely to be the High Court.

Whichever jurisdiction is invoked, the 16 or 17 year old will usually need to be represented in the proceedings as follows: ●●

In the High Court: under the court’s inherent jurisdiction in relation to minors or its jurisdiction under s 8 of the Children Act 1989: by a guardian appointed through CAFCASS. There are circumstances however in which a guardian may not be required. For example, if a child has their own solicitor, that solicitor considers that the child is able, having regard to their understanding, to give instructions in relation to the proceedings, and they have accepted instructions from the child to act for them in the proposed proceedings, r 16.6(3)(b)(i) and (ii) of the Family Procedure Rules 2020 (circumstances in which a child does not need a guardian) is likely to be satisfied. The child would therefore directly instruct their solicitor, and CAFCASS would not be involved. It should be noted however that the court (rather than 236

Going to Court 6.17

●●

the child’s solicitor) always has the ultimate right to decide if the child has the necessary ability to instruct their solicitor. In the Court of Protection: by the Official Solicitor as litigation friend, or such other person who meets the criteria contained in r 17.1(1)(a)–(b) of the Court of Protection Rules 2017.1 Within a Practice Note dated 3 February 2021, the Official Solicitor provided guidance regarding when she will be appointed as litigation friend in personal welfare proceedings. Paragraph 14 of that Practice Note confirms that the Official Solicitor does not apply her criteria that she must be a litigation friend of last resort in serious medical treatment cases.

Where circumstances permit it is advisable to consult both CAFCASS and the Official Solicitor about any proposed application concerning a 16 or 17 year old and consider their views as to venue. Paragraph 24 of the Practice Note dated 3 February 2021 emphasises that in the case of an urgent serious medical treatment application, it may assist to contact the Official Solicitor’s office in early course to notify her staff of the urgent application and to discuss any pressing issues. In such a case, parties are requested to send an email marked in the subject line URGENT: for the attention of a healthcare and welfare lawyer to the healthcare and welfare inbox [email protected]. If it becomes apparent that a case which has already been issued in the Court of Protection is best dealt with in the High Court (or vice versa), the matter can be transferred.2 1

They can fairly and competently conduct proceedings on behalf of that person, and have no adverse interests to that person. 2 The Mental Capacity Act 2005 (Transfer of Proceedings) Order 2007 (SI 2007/1899) provides for such transfers in the case of a person under 18 years old (between the Court of Protection and a court having jurisdiction under the Children Act 1989). This was done, for example, in Cambridge University Hospitals NHS Foundation Trust v GD [2021] EWHC 2105 (Fam): proceedings had been started in the Court of Protection but were transferred into the High Court in order to avoid a contested hearing on GD’s capacity which would have been contrary to her best interests.

Different age cut-offs for different types of case 6.17 The age cut-off for the exercise of powers under the MCA is not consistent throughout the Act, and whilst some of the powers set out below are not specifically relevant in medical treatment cases, practitioners should be aware of the varying age limits in order to contextualise matters: The Deprivation of Liberty Safeguards in MCA, Sch A1, cannot be used by either managing authorities or supervisory bodies to authorise a deprivation of liberty for persons under the age of 18.1 However, the Court of Protection may make an order authorising the deprivation of liberty of a 16 or 17 year old who lacks capacity under the MCA.2 In the following respects the MCA applies to people under 16: ●●

The Court of Protection may make a decision in relation to the person’s property and affairs, or appoint a deputy to do so, if the person lacks capacity and the court considers it likely that they will still lack capacity to make decisions in respect of that matter when they reach 18.3 237

6.17  Going to Court ●●

The offence of ill-treating or wilfully neglecting a person lacking capacity4 does not specify the minimum age of the victim. See the main Code of Practice at the beginning of Chapter 12.5

In the following respects the MCA applies only to people aged 18 years old and over, that is, not to 16 and 17 year-olds: Only a person aged 18 or over can make a lasting power of attorney.6 Only a person aged 18 or over can make an advance decision to refuse treatment.7 The Court of Protection may make a statutory will only for a person aged 18 or over.8

●● ●● ●● 1

2

3

4 5 6 7 8

See the ‘age requirement’ in MCA, Sch A1, para 13. The Liberty Protection Safeguards, which will ultimately replace the DoLS, will apply to persons aged 16 and above; see Dept of Health and Social Security’s Guidance Liberty Protection Safeguards: what they are (August 2021): bit.ly/DHSC-Safeguards-Aug-21. Under MCA, s 4A(3) and (4) and s 16(2)(a). Note that in D (A Child) [2019] UKSC 42, the Supreme Court held that the parent of a 16- or 17-year-old young person may not consent to their confinement which, absent a valid consent, would amount to a deprivation of that young person’s liberty within the meaning of Art 5 of the ECHR. MCA, s 18(3): ‘The powers under section 16 as respects any other matter relating to P’s property and affairs may be exercised even though P has not reached 16, if the court considers it likely that P will still lack capacity to make decisions in respect of that matter when he reaches 18’. It appears that the word ‘other’ in ‘any other matter’ may be superfluous. MCA, s 44. ‘Offences of ill treatment or wilful neglect of a person who lacks capacity within section 2(1) can also apply to victims younger than 16 (section 44)’. MCA, s 9(2)(c). MCA, s 24(1). MCA, s 18(2).

Summary 6.18 ●● ●● ●●

●●

●●

Medical treatment decision cases concerning children under 16 must only be issued in the High Court, to be heard in the Family Division. For those who are 18 years old or over, the Court of Protection is the appropriate court where the person concerned lacks capacity under the MCA. A medical treatment (or even welfare) decision in relation to a vulnerable adult who clearly has capacity to make decisions under the MCA will warrant a court application only rarely. Any such application must be issued in the High Court, to be heard in the Family Division. If there is doubt about which court is appropriate, it is unnecessary to issue in both courts. It is sensible to issue in one court only and to raise the issue of which court is appropriate in the application documents and at the first directions hearing if it is unclear. In relation to 16 to 17 year olds the choice of court is likely to be fact-specific, however if there is reason to believe that the child lacks capacity to make the treatment decision because of an impairment of, or a disturbance in their mind or brain, the jurisdiction of the Court

238

Going to Court 6.18

●●

●●

of Protection is likely to be appropriate. Conversely, the High Court is likely to be appropriate where there are doubts about following the patient’s expressed wishes, even though they have capacity within the meaning of the MCA to make the particular treatment decision. It is prudent to notify CAFCASS and the Official Solicitor at the earliest opportunity if it appears that (i) a guardian or (ii) a litigation friend will be required. In a number of cases involving a 16 or 17 year old, it may be appropriate for the young person’s parent to act as litigation friend. The following flowchart is intended to act as a guide for identifying the right jurisdiction.

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6.19  Going to Court

D  PROCEDURAL POINTS COMMON TO THE COURT OF PROTECTION AND THE HIGH COURT Public law issues 6.19 If a medical treatment case raises both capacity/best interests issues and public law issues, the proceedings should generally be brought, in the first instance at least, in the court which has jurisdiction for the capacity/best interests issues. An application for judicial review is not the appropriate forum for determining sensitive medical treatment issues, unless they are exclusively public law issues,1 which are rare. A regular issue in the Court of Protection which touches upon public law issues is the need for the relevant public body to be clear about what the actual treatment options are. This is important as the court is limited to the available options, and cannot compel a public authority to agree to a care plan which it is unwilling to implement, nor compel a clinician to provide treatment they are unwilling to provide.2 1

2

See the judgment of Munby J in A v A Health Authority [2002] 3 WLR 24, in particular at para 89 onwards. As an example of a case which does raise exclusively public law issues and is appropriately brought as a judicial review application, he refers to proceedings ‘brought with a view to compelling an under-resourced health authority to carry out heart surgery on seriously ill children’ or challenging ‘a health authority’s refusal to fund experimental treatment of a 10-year-old child suffering from leukaemia’: para 94. As an example of a medical treatment case brought by way of judicial review which should have been brought in the Family Division, he refers to R v Portsmouth Hospitals NHS Trust, ex p Glass (1999) 50 BMLR 269: paras 74–75 (see Chapter 1: Consent – General, para 1.24). N v A CCG [2017] UKSC 22 at para 44; para 6.4 above.

The timing of proceedings 6.20 An application should be made as soon as it is reasonably apparent that a court order will be required. Applicants should not delay issuing until they have obtained all the information which they think the court will require for its final determination, not least because the early involvement of a litigation friend or guardian ad litem (where appropriate) is likely to be valuable in shaping the course of the proceedings, and this is more usually obtained once proceedings have been issued. Early applications will also reduce the likelihood of delay if the litigation friend or guardian identifies gaps or flaws in the evidence provided, and/or seeks further input or assessment from experts or others.1 Judges in the Court of Protection have frequently stated that delay is inimical to the patient’s best interests, and a late application is likely to be met with judicial condemnation if there are no good reason(s) to justify the delay.2 Additionally, if the behaviour of the public body in bringing proceedings late in the day is likely to constitute unreasonable behaviour, an application for costs against that public body may be raised. Good practice will mean that cases which do require a judicial determination will be issued without delay – usually when it becomes clear following a best interests meeting. 1

If the Official Solicitor is the proposed litigation friend, it is usually helpful to obtain input as to the evidence that will be required at an early stage, before issuing the application, which is

240

Going to Court 6.21

2

usually possible subject to the usual agreement as to costs. The Official Solicitor may also be assisted by being served with the medical records of P as held by the applicant. They are often voluminous, and early access to allow those representing P to get to grips with the case as soon as possible is clearly beneficial. North West London CCG v GU [2021] EWCOP 59 at paras 37–39 and 92–103 and see also CHAPTER 3: Deciding for Others – Adults at PARA 3.45; CHAPTER 12: Pregnancy and Childbirth at PARA 12.20.

6.21 Whilst it is unnecessary to have a full bundle of evidence ready at issue, it is likely to be necessary (in addition to the application forms) to have a witness statement from the relevant clinician providing (at the least): (1) (2) (3) (4) (5) (6)

A summary of their involvement. What procedure or treatment is proposed. The risks and benefits of the proposed treatment and of any alternatives, including doing nothing. The position as to capacity. The position as to best interests. Why an application is necessary.

It is also helpful for the court to have a copy of the proposed final order at the outset so as to understand the ambit of the relief sought. Additional witness evidence and the treatment plan should then follow (if not immediately available) as soon as practicable. Where an application is made because of a doubt or dispute about a patient’s capacity or best interests, there is a balance to be struck. Save in cases of obvious urgency, sufficient time must have passed – and sufficient discussion taken place – to identify a continuing doubt or dispute which requires the court’s intervention. Nevertheless, it is a common mistake to delay too long to see whether the doubt or dispute can be resolved. Attempts at resolution can – and should – continue after proceedings have been issued. Moreover, investigation of the case in the context of issued proceedings is itself often conducive to resolution. For example, a patient’s family may agree with a joint expert’s recommendations. Other important factors which may arise, and which can contribute to the reaching of agreement include: ●● ●● ●● ●● ●● ●● ●●

independent consideration of the case; input into the expert’s instructions; the ability of the expert to explain the issues better than the treating clinicians, or that of family members to listen to an independent clinician; new recommendations from the expert which no party had previously considered; a judicial indication of where the evidence points; input into the treatment plan by way of negotiations; and mediation.

It is common for medical treatment cases to start as disputes and end with a position agreed between the parties, or where the treatment regime is not specifically opposed by a respondent.1 One obvious risk of delaying a case is that it may suddenly require an urgent application which could have been avoided, for example because of a sudden deterioration in the patient’s condition. The court is likely to be critical of urgent cases which could have been avoided by prompt applications.2

241

6.21  Going to Court When applications are brought in advance of an anticipated deterioration, the parties may have to grapple with the difficulty that the precise circumstances which the declaration will need to cover are not yet known.3 Additionally, an application may be brought at a time when P has capacity in anticipation that they will lack capacity at the relevant time, for example in obstetric cases. The courts have been clear that such applications are exceptional and should be made sparingly.4 The concept of ‘exceptionality’ is rooted in the need to protect the personal autonomy of the capable expectant mother and her right to control her own body and foetus. An expectant mother with capacity has an absolute right to refuse to consent to medical treatment for any reason – rational or irrational, or for no reason at all, even where that decision may lead to her death.5 Practitioners should therefore tread carefully if declarations and orders contingent on a loss of capacity are sought, and clearly identify how the threshold of ‘exceptionality’ has been met in the application forms. 1

2

3

4 5

Once court proceedings have been started, such cases should generally not simply be withdrawn. Instead, the court should be notified that the final hearing will not be contested and is likely to be shorter than listed. The parties should agree a draft order for consideration by the court, along with an agreed case summary and a bundle accompanied by a list of essential reading. If done in advance, it may be possible to vacate the hearing. See the express warnings of the Court of Protection (in its Practice Direction 10B, ‘Urgent and interim applications’, para 4: ‘In some cases, urgent applications arise because applications to the court have not been pursued sufficiently promptly. This is undesirable, and should be avoided. A judge who has concerns that the facility for urgent applications may have been abused may require the applicant or the applicant’s representative to attend at a subsequent hearing to provide an explanation for the delay’). Similar warnings have been given in the High Court. While this may sometimes indicate that the application is premature (see for example the comments of Parker J in Re OT [2009] EWHC 633 (Fam) at para 84), in other cases it is simply inevitable if the parties are to deal properly with a situation before it becomes urgent: see for example Re B (A Child) (Medical Treatment) [2008] EWHC 1996 (Fam), in which Coleridge J recognised the merits of an anticipatory approach in the right case, and at para 4 proposed a practical step to help ameliorate some of the inevitable difficulties: ‘A perusal of that order shows that it contemplates the withholding of intensive resuscitation treatment in two particular circumstances – that the child is on a steep downward gradient because of a deteriorating illness or becomes severely unwell for other reasons. In those circumstances the treating doctors would be permitted to withhold this type of treatment. It is less specific than sometimes declarations of this kind are. Because it is less specific and because the doctors themselves in evidence candidly admitted that they could not necessarily foresee every situation in which the permission which they had obtained would be needed, I suggested that a short joint experts’ report which is in the papers … should be attached to the order itself so that any doctor coming new to this child and to a critical situation in the future would have further guidance to enable them to make what might be a very difficult sensitive and finely balanced clinical judgment. However, I am unaware that such a course has been adopted in other cases of this kind. It may be that this is a helpful way of guiding the medical team who have care for a sick child, or a sick patient, where the medical definitions and situations which may arise in emergencies are not necessarily capable of complete contemplation …‘. GSTT & SLAM v R [2020] EWCOP 4 and United Lincolnshire Hospitals NHS Trust v CD [2019] EWCOP 24. Sidaway v Board of Governors of the Bethlem Royal Hospital [1985] AC 871 at 904–905, per Lord Templeman, Re T (An Adult) (Consent to Medical Treatment) [1993] Fam 95 at 102, Lord Donaldson MR.

How urgent is it? 6.22 The main basis for advancing a case of urgency must be the best interests of the patient. By their very nature, most if not all medical treatment

242

Going to Court 6.24 cases will have some degree of urgency about them. This must be balanced with the need to investigate the case properly through the gathering of factual and expert information. In relation to urgency, the task of the person bringing proceedings – and other parties as they become involved – is to: ●● ●● ●●

identify, through detailed discussion with treating clinicians, particular features of the case which increase the risk to the patient as time passes; make a decision about how quickly the case needs to be heard – first for directions and then for a final hearing; and provide sufficiently detailed information on this point so that the court can exercise its judgment appropriately too.

Who should bring proceedings? 6.23 It will usually be appropriate for the body responsible for the patient’s treatment, such as an NHS Trust or Clinical Commissioning Group to bring the proceedings, even if proceedings are necessary only because an objection has been raised by someone else, such as a member of the patient’s family.1 The task of taking a case to court should not be left to the patient or their family member;2 where a family member has been forced to bring proceedings because the responsible health body has failed to do so, costs may be awarded against the health body.3 1 2 3

In relation to Court of Protection proceedings, see the main Code of Practice at para 8.8: ‘For cases about serious or major decisions concerning medical treatment … the NHS Trust or other organisation responsible for the patient’s care will usually make the application.’ Swindon & Marlborough NHS Trust v S (1995) 3 Med L Rev 84. See para 6.60 below. See also North West London CCG v GU [2021] EWCOP 59 at para 99, where Hayden J deprecated a family member being put in the ‘highly invidious position’ of pressing for discontinuance of life preserving treatment.

6.24 Sometimes joint applicants/claimants1 are appropriate. For example, in obstetric cases and anorexia cases, there may be a joint application by the acute treating trust and the mental health trust. This helps to ensure that the court is provided with all the relevant evidence both as to the patient’s mental condition and as to any physical treatment required. It is perfectly possible to have two applicants. An alternative is for one party to start proceedings, naming the proposed joint applicant/claimant as a respondent2/defendant,3 explaining this party’s position in the application papers; and then to seek a direction at the first case management hearing that this party shall be the second applicant/ /claimant, as the case may be. It is often the case that the same firm of solicitors will represent the acute trust and the mental health trust, and the application is brought on a joint basis from the outset. 1 2 3

In Court of Protection proceedings the person starting proceedings is the ‘applicant’. In proceedings under the High Court’s vulnerable adult jurisdiction, the person starting the proceedings is the ‘claimant’: see para 6.83 below. In Court of Protection proceedings. In High Court proceedings – under the court’s jurisdiction in relation to vulnerable adults.

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6.25  Going to Court

What does the party bringing the proceedings want? 6.25 Those bringing proceedings should consider carefully and state clearly whether they are: ●● ●●

putting forward a positive case on any of the issues in dispute, in reliance on medical evidence or otherwise; or remaining neutral and seeking the court’s decision.1

Either position may be appropriate, depending on the circumstances, although it would be unusual for an applicant to be neutral and not (at least) adopt a preliminary position on the evidence – even if the decision is finely balanced. A party may of course change its position during the course of proceedings, as further evidence becomes available. It is helpful for parties to be explicit about their positions, first at the stage of bringing proceedings and then again, at the latest, before the final hearing. Those bringing proceedings should also consider and state clearly what relief they seek, particularly as in every case, in addition to any declaration made under s 15(1)(a) of the MCA, the court will consider whether the relief sought should be granted in the form of a declaration of lawfulness under s 15(1)(c) and/or a decision under s 16(2)(a). In so doing, the court will have regard to the statutory purpose of s 16(2)(a) as being to empower the court to make a decision on behalf of P in relation to a matter in respect of which P lacks capacity. Finally, during the Covid-19 pandemic, the court has confirmed that the need to identify and narrow the issues is even more important. Guidance issued by Sir Andrew McFarlane (President of the Family Division) titled The Road Ahead in June 2020 continues to apply (as confirmed in updated Guidance dated 8 January 2021). Paragraph 43 of that Guidance emphasises that there will need to be a ‘very radical reduction in the amount of time that the court affords to each hearing. Parties appearing before the court should expect the issues to be limited only to those which it is necessary to determine to dispose of the case, and for oral evidence or oral submissions to be cut down only to that which it is necessary for the court to hear.’ This should clearly be borne in mind when focusing on what the issues in dispute actually are. 1

For example, Barnsley Hospital NHS Foundation Trust v MSP [2020] EWCOP 26.

Participation of P (the patient) 6.26 The question of how a patient can be involved in the proceedings, including whether the patient should be made a party, has rightly gained increasing prominence in recent years. Whilst there are specific rules concerning this in the Court of Protection, these should be the starting point in any case concerning medical treatment for an incapacitous or otherwise vulnerable adult, a child capable of giving consent to treatment (if aged 16 or 17 or Gillick competent), or a child who is incompetent but nevertheless capable of expressing their wishes and feelings. Even very young children may be (or have been) expressing views or feelings which the court will take into account.1

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Going to Court 6.27 Rule 1.2 of the Court of Protection Rules 2017 provides as follows: ‘1.2 Participation of P ‘(1) The court must in each case, on its own initiative or on the application of any person, consider whether it should make one or more of the directions in paragraph (2), having regard to– (a) the nature and extent of the information before the court; (b) the issues raised in the case; (c) whether a matter is contentious; and (d) whether P has been notified in accordance with the provisions of Part 7 and what, if anything, P has said or done in response to such notification. ‘(2) The directions are that– (a) P should be joined as a party; (b)  P’s participation should be secured by the appointment of an accredited legal representative to represent P in the proceedings and to discharge such other functions as the court may direct; (c) P’s participation should be secured by the appointment of a representative whose function shall be to provide the court with information as to the matters set out in section 4(6) of the Act and to discharge such other functions as the court may direct; (d)  P should have the opportunity to address (directly or indirectly) the judge determining the application and, if so directed, the circumstances in which that should occur; (e) P’s interests and position can properly be secured without any direction under sub-paragraphs (a) to (d) being made or by the making of an alternative direction meeting the overriding objective.’ While these rules only apply to cases in the Court of Protection (and accredited legal representatives only available there), the principles behind them will be applicable in all medical treatments cases where the best interests of the patient is the focus. 1

Barts NHS Foundation Trust v Raqeeb [2019] EWHC 2530 (Fam) and see Chapter 4: Deciding for Others – Children at para 4.30.

Does the patient need to be a party to proceedings? 6.27 The Court of Protection rules do not require that the patient be made a party to the proceedings.1 Rule 1.2(2) sets out five alternative ways in which P’s participation may be secured, or their best interests and views be brought to the court’s attention, sufficient to protect their interests, without being made a party. The Court of Appeal in Re X (Court of Protection Practice)2 was asked to consider a number of procedural questions on which the President of the Court of Protection had given his view. This included the question whether, if deprivation of liberty is an issue, their Art 5 ECHR rights could be protected without their being a party to proceedings. The Court of Appeal considered that in these circumstances, a patient does have to be a party. 245

6.27  Going to Court Black LJ stated: ‘… I am only concerned, at present, with whether P must be a party to the deprivation of liberty proceedings. Given the tools presently available in our domestic procedural law, I see no alternative to that being so in every case.’3 In practice, in a medical treatment case, the patient is invariably named as a party to ensure adequate protection of their Art 6 and 8 rights, whether or not the outcome will have the effect that they are deprived of their liberty. Where the patient lacks capacity, their interests are advanced by a litigation friend or Guardian. If the patient has capacity to conduct proceedings, they will not require this and may wish to instruct their own solicitors.4 A child will also almost invariably be named as a party to proceedings in a medical case, and their interests represented by a Cafcass Guardian, unless the child is (unusually) competent to instruct their own solicitor.5 The representative of the patient or child will usually meet with them and put their views and feelings before the court. However, the duty of providing the court with all relevant information is not theirs alone, and the issue should not be left until it is too late to obtain much useful evidence. Where the patient is not previously known to the representative (if represented by the Official Solicitor or a Cafcass Guardian), the applicant and any other relevant public body should assist by providing as much information as possible to the representatives and the court: this will include covering the patient’s wishes and feelings in evidence as far as possible, early provision of records, and identifying those who may have further evidence about their wishes and feelings, such as friends or family members.6 1 2 3 4 5 6

R 9.13(4) provides: ‘Unless the court orders otherwise, P shall not be named as a respondent to any proceedings.’ [2015] EWCA Civ 599, [2016] 1 WLR 227. The Court of Appeal decided that it did not have jurisdiction to hear the appeal as there was not a ‘decision’ of the court below that was being appealed. However, the views expressed are important. At para 104. Cf Moore-Blick LJ at para 171. See for example Re SB (A Patient; Capacity to Consent to Termination) [2013] EWCOP 1417. See para 6.76 below. See further Chapter 3: Deciding for Others, paras 3.18–3.23.

The patient’s views on participation, and meeting the judge 6.28 There have to be exceptionally good reasons not to inform the patient of the existence of proceedings.1 They should be told sooner rather than later; it should not be left to the Official Solicitor or other representative to tell them about an application being made by a Trust or other public body. The patient should also be asked, both at the outset of proceedings and during the progress of the case, how they wish to participate in the decision which the court will be asked to make on their behalf. This is part of the overall development of the approach to interpretation of the MCA and the move away from an over protective, paternalistic approach to one which seeks to empower the vulnerable, and promote their autonomy as far as possible, by making sure they participate in the decision which the judge will make. 246

Going to Court 6.28 The patient can participate in a variety of ways: some simply wish the court to know of their views through an attendance note or other indirect evidence; some will wish to write to the court;2 and some will wish to meet the judge privately or attend the proceedings, remotely or in person. How the patient participates is a matter for their litigation friend, who has a wide discretion;3 other parties should generally try and facilitate what the litigation friend proposes. The former Vice-President, Charles J, issued guidance in 2016 as to how P can best be supported to participate and this should routinely be consulted.4 It is increasingly common for there to be direct face-to-face contact between the patient and the judge making the decision about their medical treatment. In Re AH (Serious Medical Treatment),5 the Court of Appeal struck a note of caution about how (not whether) this should be done. Unusually, the judge had visited after the hearing; his visit was described in the judgment: ‘A few days after the end of the hearing, the Judge went to see AH in hospital. He spent some time with AH with only a nurse and a representative of the Official Solicitor present. As referred to above, a careful Note was taken by the latter. The Judge spoke to AH, who appeared to be distressed and was crying. The Judge said that he did not know what AH wanted and that “it’s very, very hard for you to tell me”. He then said, “I think it may be that you want some peace”. Later, he said: “It is not easy for you to communicate, but I think I am getting the message”. ‘The Judge then left the ward and saw two of AH’s children. A asked the Judge whether he had asked her “the question”. The Judge replied that he “got the clear impression she wanted some peace, she showed me that she did”.’6 The Court of Appeal was concerned that what happened at the visit was: ‘capable of more than one interpretation … The language used by the Judge is capable of indicating that he did consider that AH had given him some insight into her wishes. The words, “I got the clear impression she wanted some peace, she showed me that she did” are capable of that interpretation.’7 The court concluded that the judge’s decision was undermined, and so allowed the appeal, for two reasons: ‘First, it is strongly arguable that the Judge was not equipped properly to gain any insight into AH’s wishes and feelings from his visit. Her complex medical situation meant that he was not qualified to make any such assessment. If the visit was used by the Judge for this purpose, the validity of that assessment might well require further evidence or, at least, further submissions. ‘Secondly, in order to ensure procedural fairness, the parties needed to be informed about this and given an opportunity to make submissions.’8 The court referred to the Guidance issued by Charles J, but said there should be urgent consideration of further guidance. The President said: ‘there is a pressing need for the CoP to develop some workable guidance for practitioners and judges in a manner similar to that which is available in the Family Court with regard to judges meeting with children who are subject 247

6.28  Going to Court to contested proceedings. Whilst the circumstances in a children case, and the reasons for any judicial encounter, may differ from those that apply in the CoP, the need for clarity of purpose and procedural fairness are likely to be the same.’9 Following the case, on 10 February 2022, Hayden J released short practical guidance which must be reviewed in any cases in which a judicial visit is being considered.10 This contains both important statements of principle and suggestions on how the COP and practitioners might ensure that judicial visits to P during proceedings are conducted most effectively and enhance P’s participation. In particular the key principles were identified as: ‘I. A judge meeting with P can achieve a number of important objectives, including (where P lacks capacity) their participation in ‘best interests’ decision-making, as required by s.4(4) Mental Capacity Act 2005. Which provides: (4) He must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him. ‘It is important to emphasise the mandatory nature of this obligation. ‘II. A decision to meet P is one which must be taken by the judge, having listened to any representations made on behalf of the parties. In particular, there should be discussion directed towards identifying a clear understanding, of the scope and ambit of the visit. ‘III. However, it is in the nature of such visits that the parameters may become unsettled or expanded by events and exchanges. It is, important to emphasise that: i.  a judge meeting P will not be conducting a formal evidencegathering exercise; ii. a visit may serve further to highlight aspects of the evidence that the Judge has already heard, in a way which reinforces oral evidence given by either the experts or family members; iii. a visit may sometimes lead the Judge to make further enquiries of the parties, arising from any observations during the visit; iv. at any visit the Judge must be accompanied, usually, by the Official Solicitor or her representative (at Tier 1 and 2 this will usually be the instructed solicitor); iv. it will be rare for a member of P’s family to be present at a Judicial visit. In principle, this should usually be avoided; v. a note must be taken of the visit and quickly made available to the Judge for his or her approval. That note should be circulated to the parties for them to consider and where appropriate to make any representations arising from it; vii. where the Judge considers that information from, or the experience of, visiting P may have had or might be perceived to have had an influence on the ‘best interests’ decision, the Judge must communicate that to the parties and, where appropriate, invite further submissions.’11 1

NHS Trust (1) and (2) v FG [2014] EWCOP 30, where Keehan J authorised the applicant Trusts not to inform P of the proceedings which had been brought, but for a limited time only. He described this step as ‘at the extremity of what is permissible under the European

248

Going to Court 6.29 Convention. It is a very exceptional step which will only be justified and required if the interests of the patient and/or the child demand the same’ (para 55). Evidence of the continued impact of disclosure once P’s child had been born was also required and the patient was informed of the proceedings as soon as it was safe to do so (paras 63–66). More recently see Re A (Covid-19 vaccination) [2021] EWCOP 47. 2 For example, in A NHS Foundation Trust v Ms X [2014] EWCOP 35. 3 A County Council v AB (Participation of P in Proceedings) [2016] EWCOP 41. 4 ‘Facilitating participation of P and vulnerable persons in Court of Protection proceedings’, issued by Charles J, former Vice President of the Court of Protection, see bit.ly/CharlesJfacilitate-02-11-16. Also annexed to the Guidance on Official Judicial Visits to P [2022] EWCOP 5. 5 Re AH (Serious Medical Treatment) [2021] EWCA Civ 1768. 6 [2021] EWCA Civ 1768 at paras 17–18. 7 Ibid, para 70. 8 Ibid, paras 71–72. 9 Ibid, para 80. 10 Judicial visits to P (guidance) [2022] EWCOP 5; see www.bailii.org/ew/cases/EWCOP/2022/5. html. 11 Ibid, para 6.

The Official Solicitor1and CAFCASS2 6.29 ●● ●●

●●

1 2 3 4

5

The Official Solicitor may act as: litigation friend of last resort to the subject of the proceedings in the Court of Protection (where the subject is known as P) or High Court proceedings;3 litigation friend of last resort to a party other than the subject of proceedings (a ‘protected party’) in the Court of Protection or High Court (for example, a parent with learning disabilities in childcare proceedings, or a family member who also lacks capacity to conduct proceedings);4 (far more rarely) an advocate to the court in the Court of Protection or the High Court. The Official Solicitor is also on occasion appointed under the inherent jurisdiction of the High Court to carry out an investigation or enquiry known as a Harbin v Masterman investigation. This might be, for example, an investigation into whether a proposed subject of proceedings has capacity to make the decisions in question.5

The Official Solicitor is an officer of the Senior Courts, appointed by the Lord Chancellor: Senior Courts Act 1981, s 90(1). Children and Family Court Advisory and Support Service, established under Criminal Justice and Court Services Act 2000, s 11. The requirement that she be the litigation friend of last resort does not apply in cases of serious medical treatment. The authors have been involved in cases involving both medical and welfare decisions regarding incapable adults where both the person who is the subject of the proceedings and another respondent (for example, their parent) have lacked capacity. In such cases the Official Solicitor has acted as litigation friend to both incapable parties, but has appointed separate legal teams to provide the legal representation with a strict legal firewall in the Official Solicitor’s office. See, as an example, KD & LD v London Borough of Havering, COP 11448388/03, 19 October 2009 in which both the subject of the application, LD, and her mother, KD, also a protected party, were represented by the Official Solicitor as litigation friend. The Official Solicitor instructed different external solicitors and counsel to represent each. See Practice Note dated 3 February 2021, The Official Solicitor to the Senior Courts: appointment as Litigation Friend in Personal Welfare Proceedings in the Court of Protection (including Serious Medical Treatment Cases) and appointment as Advocate to the Court: see bit.ly/OS-PD-Feb-21.

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6.30  Going to Court 6.30 CAFCASS provides representation for children in High Court proceedings, by guardians ad litem, and can also (more rarely) act as advocate to the court in such proceedings.1 1 See below at para 6.76. Re X (No 2) [2021] EWHC 65 (Fam) and AB v CD [2021] EWHC 741 (Fam) are recent examples of when CAFCASS. were appointed to act as advocate to the court.

Documentation Bundles 6.31 The President of the Family Division has issued a Practice Direction on Court Bundles (FPR PD 27A) which addresses preparation of the bundle for Family Division hearings.1 Bundles should contain only those documents which are relevant to the hearing and which it is necessary for the court to read or which will be referred to during the hearing:2 ●●

●●

preliminary documents: –– an up-to-date case summary;3 –– statement of the issue or issues to be determined (1) at that hearing and (2) at the final hearing; –– position statement by each party including a summary of the order or directions sought by that party (1) at that hearing and (2) at the final hearing; –– an up-to-date chronology, if it is a final hearing or if the case summary is insufficient; –– skeleton arguments, if appropriate, with copies of all authorities relied on; –– a list of essential reading for that hearing; –– the time estimate for the hearing;4 a bundle5 divided into separately paginated sections.6

See the Practice Direction itself for more detail as to the specific requirements. The equivalent Practice Direction for the Court of Protection (PD 4B) provides detailed guidance on the contents (para 4.1) and format (paras 4.2–6.2) of bundles for interim and final hearings. A copy of the most recent care plan is required, as well as a plan covering the proposed treatment. If there is a risk that P will need to be restrained, a separate plan dealing with how this is to be managed should be provided, as well as a transfer plan if it is proposed that P will be transferred for the purposes of providing treatment. In addition, any lasting power of attorney should be included in the bundle, as well as documentation relating to any urgent or standard authorisation (even where these have been refused). It is also helpful to have any documentation relating to any application under the MHA. If an IMCA has been instructed, the IMCA’s report should be included in the bundle. Save for key clinical records, it is usually unnecessary for the court to have the patients’ entire medical records. Any particular records of note should be agreed and placed in either section (j) (other records) or a separate records bundle (dependent on the size). 250

Going to Court 6.33 1

2 3 4 5 6

Para 26, Practice Guidance, Applications Relating to Medical Treatment [2020] EWCOP 2, see bit.ly/VP-Guide-Jan-20. See also the Guidance on E-Bundles for use in the Family Division issued 21 December 2021 at bit.ly/E-Bundles-21-Dec-21; and paragraphs 89-93 of the Guidance to Remote Access to the Court of Protection issued 31 March 2020 at bit.ly/ Remote-31-Mar-20. Family Procedure Rules 2010, PD 27A, para 4.2. Family Procedure Rules 2010, PD 27A, para 4.3(a): ‘an up to date summary of the background to the hearing confined to those matters which are relevant to the hearing and the management of the case and limited, if practicable, to four A4 pages’. In addition a reading time estimate will assist the judge. See n1 above, paras 3.1–3.2: agreed if possible, prepared by the applicant or, if the applicant is a litigant in person, by the first named respondent who is not a litigant in person. See n1 above, para 4.2: Section (a) Preliminary documents; (b) Applications and orders; (c) Statements and affidavits; (d) Care plans (where appropriate); (e) Experts’ reports and other reports (including those of a guardian, children’s guardian or litigation friend); and (f) Other documents, divided into further sections as may be appropriate.

Orders and position statements 6.32 Parties should attempt to agree a draft order before each hearing and supply any agreed draft to the court. In order for this to be done, it is usually helpful for the parties to meet prior to the hearing at an advocates’ meeting, which can be by telephone/video (etc), and is normally arranged by the solicitor for the applicant. The content of the main order, transparency order/ reporting restriction order and any third-party orders can be considered at this meeting. If there are litigants in person, they should also be invited to the advocates’ meeting. There is no magic to a position statement and there is no prescribed form. It can be a very simple document, as short as the circumstances of the case will allow, setting out a party’s position with a summary of the reasons for it. The following format is suggested for a case management hearing, and the same structure can be used for a final hearing, save that points (4) and (9) will probably be redundant by that stage: (1) (2) (3) (4) (5) (6) (7) (8) (9)

Introduction: including an essential reading list/ time estimate to read the identified documents. Detail of the application before the court. Detail of the orders sought. Procedural issues: parties, permission, appointment of litigation friend, reporting restrictions (etc). Succinct background. Succinct legal framework. Issues for the hearing. Position in respect of each of the issues for hearing with supporting submissions. Future case management.

Hearings 6.33 Parties should ensure at the outset of any hearing (whether final or otherwise) that it is clear whether the hearing is in public or private, and what if any applications for reporting restriction orders are required.1

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6.33  Going to Court Both the High Court and the Court of Protection can sit in the middle of the night2 and/or at a hospital3 if that is what a particularly urgent and difficult case requires. If factual and/or expert issues are in dispute, including whether the proposed course of treatment is in the best interests of the patient, the final hearing will run much as a trial would in any other court. If, by the time of the final hearing, there are no contested issues and the parties are well organised, they may be able to arrange for a judge to look at an agreed order on the papers. However, in most cases an oral hearing will still take place, although the parties should of course notify the court if the agreed time estimate has changed. In cases of serious medical treatment, the court will usually wish to hear not only from the treating clinicians, and any instructed experts, but also from P themselves, where this is possible. This has become quite straightforward during the Covid-19 pandemic and it is likely that patients will continue to attend court from their hospital bed or another room within the hospital via video-link, and convey their wishes and feelings to the court.4 Additionally, the court may wish to hear from those interested in P’s welfare (irrespective of whether those persons have party status), to ensure that there is evidence of P’s wishes and feelings, and evidence beyond what is in P’s ‘medical’ best interests.5 In all cases the court must exercise its own judgment to reach a decision. Practitioners should bear in mind that in the forum of both the High Court’s inherent jurisdiction and the Court of Protection, they should not give the impression that they are presenting the court with a fait accompli. A draft order, whether for directions or a final order including declarations, is simply a proposal for the court’s consideration and discretion, albeit that the court is likely to be strongly influenced by the parties having reached an agreement. While some judges may be happy to see – or even propose – the words ‘BY CONSENT’ in an agreed final order, others will deprecate this course of action because the court must exercise its independent judgment. If the parties or the court wish to reflect the agreement of the parties to the order, this can be done by way of a recital stating ‘UPON the parties agreeing to the terms of this order’. 1 2

3 4 5

See the rules in each jurisdiction at paras 6.40 and 6.82 below. The Court of Protection may sit at any place in England and Wales, on any day and at any time (MCA, s 45(3)), thus retaining the flexibility of the High Court’s procedures: in Re MB (an adult: medical treatment) [1997] 2 FLR 426, the first instance hearing took place between about 8pm and 9pm, and the Court of Appeal hearing between about 11pm and 1am. See, by analogy in the inherent jurisdiction, Re OT [2009] EWHC 633 (Fam) per Parker J at para 8. See para 6.36 below for remote hearings generally. Evidence from family members and care staff may be particularly helpful as these witnesses are likely to have spent more time with P than senior clinicians. Family witnesses are particularly helpful at providing information regarding the patient’s past wishes and feelings, and as regards their beliefs and values (over the years). This serves to contextualise the medical evidence and often brings the patient ‘to life.’

Typing up the order 6.34 In the Royal Courts of Justice, whether High Court or Court of Protection, the practice is for the advocate acting for the applicant to perfect the

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Going to Court 6.36 order following the hearing and email it to the associate1 on the email address supplied by the associate or to the judge’s clerk for final judicial approval. If a copy of the sealed order is required urgently, the associate should be alerted to this. Due to the urgency of many applications, this must be done either during the hearing (where any amendments are made by the judge and the advocate types) or immediately thereafter by the advocate. 1

Note that this person is distinct from both the usher and the judge’s clerk. See the President’s Memorandum: Drafting Orders, 10 November 2021, which requires that the order is completed before leaving court: bit.ly/Drafting-Orders-10-Nov-21. In practice, slightly more leeway is often permitted but orders should be submitted promptly.

E  THE COURT OF PROTECTION 6.35 The Court of Protection is a superior court of record created by statute.1 In connection with its jurisdiction the Court of Protection has the same powers, rights, privileges and authority as the High Court.2 From 1 April 2009 the Court of Protection became part of Her Majesty’s Courts Service and its forms and practice directions can be found on the HMCS website.3 1 2 3

MCA, s 45(1). MCA, s47(1). www.gov.uk/government/organisations/hm-courts-and-tribunals-service.

Location and judges 6.36 The Court of Protection sits at a number of locations around the country, with a range of judges of different levels of seniority, depending on the nature of the case. The Court of Protection may sit at any place in England and Wales, on any day and at any time.1 Judges who sit in the Court of Protection may be district judges (Tier 1), circuit judges (Tier 2) or High Court Judges (Tier 3), but all must be nominated to do so.2 A judge who has been nominated to act as a judge of the Court of Protection under s 46 of the MCA, and who is neither a Tier 2 judge nor a Tier 3 judge, is a Tier 1 judge. Practice Direction 3A outlines the criteria for Tier 2 and 3 judges for the purposes of the Court of Protection Rules 2017.3 There is a President, Vice-President and Senior Judge of the Court of Protection.4 The Court of Protection has a building at First Avenue House, 42–49 High Holborn, London WC1A 9JA, which houses its central registry. Court of Protection hearings can also take place in other locations in London. Regional hubs have been set up so that welfare cases, except the majority of serious medical treatment cases, can be issued and heard in the areas where the parties are located. The regional hubs are in Birmingham, Bristol, Cardiff, Leeds, Newcastle, Manchester and Reading. Outside the hub, there are numerous regional court centres and the specific venue will be identified by the judge on issue. In relation to hearings before a Family Division judge (sitting as a nominated judge of the Court of Protection) at the Royal Courts of Justice (‘RCJ’), the listing of such cases is dealt with by the Clerk of the Rules at the RCJ; and the RCJ also seals orders made there. 253

6.36  Going to Court Medical treatment cases can, in appropriate circumstances, be allocated to a Tier 3 or Tier 2 level judge sitting at a regional centre rather than at the RCJ. The authors have recent experience of such cases being listed in Bristol, Cardiff and Liverpool. This tends to happen in non-urgent medical cases because of the special procedures at the RCJ for dealing with very urgent hearings, and the greater availability of suitable judges in London. In addition to the ‘gatekeeping’ judge considering the venue, if the first directions hearing in a medical treatment case is heard in London, consideration should be given to whether it should be transferred for any further or final hearings if a transfer would allow family members wishing to attend to do so more easily and cheaply (for example). Regional listing is not a significant case management issue at the time of writing, as during the global pandemic the vast majority of cases have been heard remotely, usually via Microsoft Teams. It may be that some ‘in person’ hearings will be unnecessary in the future, particularly for directions or very urgent hearings. It is likely that further presidential guidance will be provided about this in due course. To that end, the Vice-President has commissioned a working group to conduct a consultation and produce a report making recommendations for post-pandemic working practices in the Court of Protection. 1 2 3 4

MCA, s 45(3). 4 During the pandemic, remote hearings became the usual practice, with specific guidance issued on 31 March 2020: bit.ly/Remote-31-Mar-20. At the time of writing, hearings of medical treatment applications are once again mainly attended. MCA, s 46. Practice Direction 3A, para (2)(a) and 3, and Practice Guidance Applications Relating to Medical Treatment [2020] EWCOP 2, para 19. MCA, s 46(3)-(4). Currently Sir Andrew McFarlane (P), Mr Justice Hayden (VP) and Senior Judge Hilder (SJ).

Sources of procedural rules and guidance 6.37 Any practitioner advising or taking steps in relation to the Court of Protection should look directly at five key sources:1 ●● ●● ●● ●● ●● 1

2 3 4 5

Mental Capacity Act 2005 (‘MCA’); Court of Protection Rules 20172 (‘the Rules’); the Court of Protection’s Practice Directions;3 Mental Capacity Act 2005 Code of Practice dated 23 April 2007 (‘the Main4 Code of Practice’); the Court of Protection forms.5 Reference may occasionally be needed to the Civil Procedure Rules. See r 2.5 of the Court of Protection Rules 2017: ‘In any case not expressly provided for by these Rules or the practice directions made under them, the court may apply either the Civil Procedure Rules 1998 or the Family Procedure Rules 2010 (including in either case the practice directions made under them) with any necessary modifications, in so far as is necessary to further the overriding objective’. SI 2017/1035, made under s 51 of the MCA. The Rules are the Court of Protection equivalent of the Civil Procedure Rules: see www.legislation.gov.uk/uksi/2017/1035/contents/made. Given under s 52 of the MCA. Available on the Courts and Tribunals Judiciary website at: www.judiciary.uk/publications/court-of-protection-practice-directions/. ‘Main’, to distinguish it from the supplementary Deprivation of Liberty Safeguards Code of Practice under the MCA dated 26 August 2008. A list of forms is available on the gov.uk website at www.gov.uk/government/collections/ court-of-protection-forms.

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Going to Court 6.38

The court’s general approach 6.38 Medical treatment cases in the Court of Protection are subject to more rules than was the case when they were dealt with under the High Court’s inherent jurisdiction. It would be wrong, however, to see the many rules as an inflexible straitjacket. Key parts of the procedure are strict (for example, a prescribed application form and the need for permission in most cases). But in between, there is much room for flexibility.1 The Court of Protection Rules maintain the flexibility of the procedure under the High Court’s inherent jurisdiction, and arguably go further in making express provision for the court to do, largely, whatever it sees fit in the best interests of the patient. This reflects the underlying approach of the court, which is inquisitorial, rather than adversarial. Parties are expected to work cooperatively in the best interests of P when preparing the case, and to assist the court in determining P’s best interests. The same approach is adopted by the High Court when using its inherent jurisdiction. The Rules have their own overriding objective, of ‘enabling the court to deal with a case justly, and at proportionate cost, having regard to the principles contained in the Act.’2 Importantly, the parties are required to help the court to further the overriding objective.3 The court itself will further the overriding objective by actively managing cases.4 The Rules include examples of active case management5 and the whole of Pt 3 is devoted to ‘managing the case’. Insofar as is necessary, the Family or Civil Procedure Rules (and their Practice Directions) may be applied with necessary modifications to fill any gaps in the Court of Protection Rules and Practice Directions.6 The Rules provide extreme flexibility, sensibly encouraging the court to prioritise substance over form.7 The court’s power to make summary decisions must, however, be exercised appropriately and with restraint.8 The court cannot consider best interests properly9 unless it takes a more inquisitorial approach than the civil courts would do when deciding a case under the Civil Procedure Rules: for example, by ordering that a non-party provide evidence on a specified issue, or calling for reports of its own initiative under s 49 of the MCA. When capacity and/or best interests are in dispute, the parties often advocate polarised positions, and the court will be assisted by – and indeed expect – full cross-examination and argument in order to test the issues.10 However, the court will be cautious not to lose sight of the purpose of the proceedings: whatever the disputes between the parties, the court must make a decision in the patient’s best interests if they lack capacity to make it themself. 1 2 3 4 5 6 7

For example, the court may make an interim declaration in an urgent case before an application has been drafted let alone filed; and may make an order for the subsequent filing of a COP1 and dispense with the need for a COP1B, COP2 or COP3. Rule 1.1(3) sets out a list of considerations which ‘dealing with a case justly and at proportionate cost’ includes. Rule 1.4. Rule 1.3. Rule 1.3, r 3.1–3.2 and r 3.5-3.6, r 5(2) and r 26. Rule 2.5. For example: it may dispense with the requirement of any rule (r 3.3); it may exercise its powers on its own initiative without representations from the parties (r 3.4(2)); and where there has been an error of procedure, the error does not invalidate any step taken in the proceedings unless the court so orders (r 3.5(a)).

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6.38  Going to Court 8

See CB v Medway Council [2019] EWCOP 5, for example, where Mr Justice Hayden allowed an appeal from HHJ Blackhouse who had summarily disposed of an application brought pursuant to s 21A during an ex tempore judgment. 9 ‘Dealing with a case justly includes … ensuring that P’s interests and position are properly considered’: r 1.1(3)(b). In doing so the court must have ‘regard to the principles contained in the Act’: r 1.1(1). These include the key principle (MCA, s 1(5)) that an ‘act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests’. 10 While the usual procedure will be for witness statements (r 14.3(2)) and expert reports to stand as evidence in chief, the court can require all witnesses to be fully examined to elicit their evidence in chief orally. In the authors’ experience this has occurred in highly disputed cases concerning the giving or withholding of life-saving treatment. Additionally, family members will often not be parties to the proceedings, but may wish to engage in the final hearing and provide their views to the court. This sometimes happens by family members simply speaking to the court without being formally sworn in, and without being cross examined.

The court’s powers to make medical treatment decisions 6.39 The Court of Protection’s powers to make medical treatment decisions are as follows: ●●

●● ●●

●●

●●

The power to make declarations as to whether a person has or lacks capacity to make a specified decision, or decisions on specified matters, and as to the lawfulness of any act done, or yet to be done, in relation to that person.1 The power to make personal welfare orders on behalf of people who lack capacity to make such decisions themselves.2 The power to make interim declarations, orders and case management directions on an interim basis3 even if lack of capacity is not established on the balance of probabilities, so long as there is reason to believe that P lacks capacity in relation to the matter and it is in P’s best interests for the court to make the order or give the directions, as the case may be, without delay.4 This provision is intended to provide for situations where the obtaining of a formal declaration or decision under s 15 or s16 will take time, but common sense suggests that some action may be needed in the interim.5 Less evidence is required to found the court’s interim jurisdiction under s 48 than that required to justify the ultimate declaration. What is required is sufficient evidence to justify a ‘reasonable belief’. As stated by Hayden J: ‘Ultimately whilst I recognise that, for a variety of reasons, it will rarely be possible at the outset of proceedings to elicit evidence of the cogency and weight required by Section 15, I think it is important to emphasise that Section 48 is a different test with a different and interim objective rather than a lesser one. “Reason to believe” that P lacks capacity must be predicated on solid and wellreasoned assessment in which P’s voice can be heard clearly and in circumstances where his own powers of reasoning have been given the most propitious opportunity to assert themselves.’6 Once a reasonable belief that P lacks capacity is established, the court must then move on to a second stage to decide what action, if any, it is in P’s best interests to take before a final determination of their capacity can be made. Such action may include not only immediate safeguarding steps with regard to P’s affairs or life decisions, but also directions to enable evidence to resolve the issue of capacity to be obtained quickly. 256

Going to Court 6.40 ●●

The appropriate directions will depend on the facts of the case, and a balance between the importance and urgency of making the decision on the one hand, and, on the other hand, the principle that P’s right to autonomy is to be restricted as little as is consistent with their best interests. Where capacity itself is in issue, it may be that the only proper interim direction should be obtaining appropriate specialist evidence to determine that issue.

1 2 3

MCA, s 15. MCA, s 16(2)(a). Rule 10.10(1). But see DP v LB Hillingdon [2020] EWCOP 45 which held that the court does not become responsible for authorising P’s Deprivation of Liberty upon the issuing of a s 21A application (and an interim declaration under s 48 would not therefore be necessary). MCA, s 48. Re F [2010] 2 FLR 28 per HHJ Hazel Marshall QC at paras 25 and 26. DP v LB Hillington [2020] EWCOP 45 at para 69; and see his summary of s 48 at para 62, where Hayden J said (among other things): ‘Section 48 is a permissive provision in the context of an emergency jurisdiction which can only result in an order being made where it is identifiably in P’s best interests … The presumption of capacity applies with equal force when considering an interim order pursuant to Section 48 as in a declaration pursuant to Section 15 … There is a balancing exercise in which the Court is required to confront the tension between supporting autonomous adult decision making and to avoid imperilling the safety and well-being of those persons whom the Act and the judges are charged with protecting.’ See also Wandsworth v M [2017] EWHC 2435 (Fam) and DA v DJ [2017] EWHC 3904 (Fam) for a slightly different approach by Parker J. See Chapter 2: Consent & Capacity – Adults, at para 2.21.

4 5 6

Privacy and publicity – general issues 6.40 Those involved in medical treatment cases should consider two questions: ●● ●●

Is each hearing in private or public? To what extent (if at all) is publication of information relating to the proceedings restricted or permitted?

It is important to consider these issues before any application is made, as hearings in medical treatment cases are likely to be held in public, subject to reporting restrictions orders to protect the privacy of the individuals concerned. Prior to the introduction of the transparency order procedure in 2017, serious medical treatment cases in the Court of Protection were almost invariably heard in public and required prior notice of the application for reporting restrictions be given to the media. This is no longer required in the Court of Protection. As Charles J stated in V Assoc Newspapers Ltd:1 ‘To my mind proper notification to the media of the existence of the proceedings and of the date of the public hearing of a case relating to serious medical treatment and the terms of any reporting restrictions order made when a public hearing is directed is what really matters. And when that order follows a standard process referred to in a practice direction or rules it seems to me that: i. there are compelling reasons why the parties bound by the reporting restrictions order need not be notified of the application (see s.12(2) of the HRA 1998), particularly if they are defined by reference to those who attend the public hearing (or get information from those that do), and 257

6.40  Going to Court ii. this view is supported by the approach of the Court of Appeal in X v Dartford and Gravesend NHS Trust (Personal Injury Bar Association …[2] ‘If those bound by the order (and so the media) have such notification they can then attend the hearing knowing, in general terms, what the case is about and the terms of the reporting restrictions order and they can challenge that order then or at another time.’ However, where reporting restrictions are sought to be imposed on any public hearing in the Family Division or higher court, an application and notification to the media will still be required.3 1 2 3

[2016] EWCOP 21. [2015] 1 WLR 3647, in particular at paras 25 to 35. See para 6.82 below.

Court of Protection proceedings 6.41 ●●

●●

●●

●●

●●

●●

For Court of Protection proceedings a summary is as follows. Section 12(1)(b) of the Administration of Justice Act 1960 provides that: In any proceedings brought under the MCA before a court which is sitting in private, publication of information about the proceedings will generally be contempt of court. However, there will be no contempt where the court, in accordance with s 12(4), has authorised the publication of the information under r 4.2 (communication of information (whether or not contained in a document filed with the court) relating to proceedings in the Court of Protection which are held in private), or where the court has made an order under r 4.3 imposing restrictions on the publication of information where proceedings are heard in public. The court will ordinarily (and so without any application being made) (a) make an order under r 4.3(1)(a) that any attended hearing shall be in public, and (b) in the same order, impose restrictions under r 4.3(2) in relation to the publication of information about the proceedings. This applies to hearings in all proceedings except applications for a committal order. That order, which makes such hearings public whilst at the same time imposing reporting restrictions, is known as a ‘transparency order’ and will ordinarily be in the terms of the standard order approved by the President of the Court of Protection.1 Practice Direction 4C of the Court of Protection Rules 2017 highlights that the court may also make an order under r 4.3(1)(b) or (c) for a part only of the hearing to be held in public; or excluding any persons, or class of persons from the hearing, or from such part of the hearing as is held in public.2 For example, parts of a hearing where the patient speaks with the judge are likely to be heard in private, and may also be with the exclusion of all persons except P’s legal representatives. If a party considers that the hearing should be in private, in accordance with para 2.5 of Practice Direction 4C, the court will have regard in particular to: (a) the need to protect P or another person involved in the proceedings; (b) the nature of the evidence in the proceedings; 258

Going to Court 6.41 (c)

●●

●●

●●

●●

whether earlier hearings in the proceedings have taken place in private; (d) whether the court location where the hearing will be held has facilities appropriate to allowing general public access to the hearing, and whether it would be practicable or proportionate to move to another location or hearing room; (e) whether there is any risk of disruption to the hearing if there is general public access to it; (f) whether, if there is good reason for not allowing general public access, there also exists good reason to deny access to duly accredited representatives of news gathering and reporting organisations. If an application is to be made for the proceedings to be in private, this should be done in advance of the hearing (as opposed to orally on the morning of the hearing) if at all possible. A COP9 application supported with reasons and witness evidence will generally be appropriate, since the expectation is that proceedings should be in public. In case the judge does not have intimate knowledge of the relevant practice directions, it is incumbent on one of the parties to bring the requirement of the format of the hearing to the court’s attention; the court will also expect a draft of the proposed transparency order to be provided in advance of the hearing. This is important, as members of the public may seek to join the hearing and a copy of the transparency order should be provided to them, or the relevant parts read to them by the judge, at the commencement of the hearing. It is usually the case that P, their family, and the addresses of where the aforesaid live or are being cared for would be anonymised. However, if there has been any media coverage of P’s circumstances already – as is increasingly often the case – the court must be informed of this in order to decide whether anonymisation is appropriate.3 Any restrictions that seek to go wider than that will need to be explained by the parties – usually in the position statements drafted for the attended hearing. For example, if the applicant (for example a Trust or CCG) or the treating clinicians wish to be anonymised, the court will wish to understand why this is necessary. In Public Guardian v JM, Sir James Munby stated that: ‘Although P’s identity (like the identity of a child in proceedings in the Family Court, protected by section 97 of the Children Act 1989) is usually protected by an order made in accordance with rule 91 of the Court of Protection Rules 2007, it has long been settled law that section 12 of the Administration of Justice Act 1960 does not protect the identities of those involved in the proceedings. If the anonymity of persons other than P is to be preserved, an order of the court is required. The burden is on those seeking such an order to establish the need for anonymity; not on those seeking publicity to establish why there should not be anonymity.’4

●●

Paragraph 27 of Practice Direction 4A entitled ‘Hearings (Including Reporting Restrictions)’ is usually considered by the court if further restrictions are suggested as being required; this provides that: ‘The aim should be to protect P rather than to confer anonymity on other individuals or organisations. However, the order may include 259

6.41  Going to Court restrictions on identifying or approaching specified family members, carers, doctors or organisations or other persons as the court directs in cases where the absence of such restriction is likely to prejudice their ability to care for P, or where identification of such persons might lead to identification of P and defeat the purpose of the order. In cases where the court receives expert evidence the identity of the experts (as opposed to treating clinicians) is not normally subject to restriction unless evidence in support is provided for such a restriction.’5 ●●

●●

●● 1 2 3

4 5 6 7 8 9

Consideration should also be given to the length of time for which reporting restrictions should be sought, and whether there should be more stringent restrictions in the short term;6 whether, if the restrictions are sought during P’s lifetime but this is expected to be a short period, whether some provision should be made to allow a further application after P’s death;7 and evidence may be required from P’s treating psychiatrist or P’s family or other interested parties as to the potential impact of publication on P. Save in exceptional cases, the publication of material which is already in the public domain will not be restricted.8 During the Covid-19 pandemic, the majority of hearings have been remote video hearings pursuant to r 3.1(2)(d) of the Court of Protection Rules 2017, and the parties and their representatives have attended all hearings by way of video link. In addition to the standard transparency order terms referred to above, the court will also usually direct (within the same order or separate order) that it is forbidden for any person to make, or attempt to make: ●● an unauthorised recording; ●● an unauthorised transmission of an image or sound which is being transmitted through a live video link or transmitted through a live audio link in this case; or ●● an unauthorised transmission of an image of, or sound made by, any person (whether P or another person) while that person is participating in court proceedings through a live video link or a live audio link in this case. A combined transparency order/remote hearing can be found on the judiciary.uk website.9 Published on the judicial website: see bit.ly/COP-TTO-17. See bit.ly/HMC-PD4C. Manchester University NHS Foundation Trust v William Verden and Amy McClennan [2022] EWCOP 4. The court found itself in the unwelcome position of having granted a reporting restrictions order despite there having been substantial media coverage of the case already. Per Lieven J at para 11: ‘For the future, the expectation, except in very unusual cases, would be for any party applying for a RRO to set out what media coverage had taken place, so the court is not placed in this situation again.’ [2014] EWHC 7 (COP) at para 3, citing A v Ward [2010] EWHC 16 (Fam), [2010] 1 FLR 1497, paras 129–131. See bit.ly/HMC-PD4A. In obstetric cases, it may for example be appropriate to seek more stringent restrictions or even a total embargo until after the delivery of the baby. For example: NHS Trusts v C (Medical Treatment and Reporting Restrictions Order) (1) [2016] EWCOP 17. See Re C (Adult Patient: Restriction of Publicity After Death) [1996] 1 FCR 605 and Press Association v Newcastle Upon Tyne Hospitals Foundation Trust [2014] EWCOP 6. Practice Direction 4A, para 28. www.judiciary.uk/wp-content/uploads/2017/11/cop-transparency-template-order-for-2017rules.pdf.

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Going to Court 6.44

Publication of judgments 6.42 As a matter of practice, a judgment in a serious medical treatment case is usually published in anonymised form, with the content of the judgment reflecting the terms of any transparency order made. This is reflected in para 17 of the Practice Guidance on Publication of Judgments in the Court of Protection issued by the then President (Sir James Munby) on 16 January 2014.1 All practitioners and those involved in litigation must always bear in mind the vital importance of strictly complying with the embargo imposed on the circulation of draft judgments prior to the judgment being formally released by the judge.2 1 2

See bit.ly/CoP-Transparency-16-Jan-14. The Counsel General for Wales, R (on the application of) v The Secretary of State for Business, Energy and Industrial Strategy [2022] EWCA Civ 181: see www.bailii.org/ew/cases/EWCA/ Civ/2022/181.html.

Points to consider before starting proceedings Pre-issue steps 6.43 Paragraph 14 of the Guidance issued by the Vice President dated 17 January 2020 emphasises that an application relating to medical treatment falls within the Personal Welfare Pathway and that the pre-issue stage of the Personal Welfare Pathway (Practice Direction 3B)1 should therefore be followed, and that it is important: (a) (b)

1

to consider whether steps can be taken to resolve the relevant issues without the need for proceedings; but to recognise that delay will invariably be inimical to P’s welfare, and, where resolution cannot be achieved within P’s own timescales, proceedings should be issued.

See also the points of general application above at Section D above: Procedural points common to the Court of Protection and the High Court – paras 6.19–6.34. Practice Direction 3B: see bit.ly/HMC-PD3B. Para 2.1 provides that the Personal Welfare Pathway comprises six stages: (a) the pre-issue stage (see para 2.2); (b) the point of issue of the application (see para 2.3); (c) case management on issue (see para 2.4); (d) the Case Management Conference (see para 2.5); (e) the Final Management Hearing (see para 2.6); (f) the Final Hearing (see para 2.7). Note that not all stages will be able to be followed in urgent cases (see paras 2.2(2), 2.3(3), 2.4(2) which deal with urgent applications).

Litigation friend1 6.44 P will generally – but not always – need a litigation friend. P does not need a litigation friend if they are not a party to the proceedings, although in medical treatment cases P will invariably be made a party to the proceedings and a litigation friend will be appointed to represent their interests. A litigation friend is not appropriate if P has the capacity to conduct the proceedings.2 If P asserts that they have litigation capacity, this should be dealt with as a preliminary before considering the substantive application.3

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6.44  Going to Court Consideration should also be given to the need for litigation friends for any protected parties4 or children who are parties to the proceedings. The prerequisites for a litigation friend are that they can fairly and competently conduct proceedings on behalf of the person in question, and have no interests adverse to those of that person.5 The appointment of the litigation friend must be made by the court where the litigation friend is for: P in all cases;6 and any protected parties or children if the prospective litigation friend is the Official Solicitor.7

●● ●●

The court may appoint a litigation friend only with the consent of the person to be appointed.8 Applications in which the Official Solicitor may be invited to act should generally be discussed with a member of the Official Solicitor’s staff in advance.9 1 2 3 4 5 6 7 8 9

See generally Pt 17 of the Court of Protection Rules 2017 (r 17.1–17.8) and Practice Direction 17A, ‘Litigation Friend’. Because the test of capacity is issue-specific. See Chapter 2: Consent & Capacity – Adults at para 2.8 a person may in principle have the capacity to conduct the proceedings, but lack capacity to decide the substantive issue in question. See, for example, Re SB [2013] EWHC 1417, where Holman J, in an extempore judgment, granted an application that the appointment of the Official Solicitor as litigation friend should be brought to an end as he was satisfied that P was able to instruct her own lawyers. See footnote 1 in PD 17A: ‘“Protected party” means a party, or an intended party (other than P or a child) who lacks capacity to conduct the proceedings’. Rule 17.1 of the Court of Protection Rules 2017. Rule 17.3(1)(a) of the Court of Protection Rules 2017. Rule 17.3(1)(c) of the Court of Protection Rules 2017. Rule 17.4(2)(b) of the Court of Protection Rules 2017. Para 24 of the Practice Note of the Official Solicitor dated 3 February 2021 states that in the case of an urgent serious medical treatment application, it may assist to contact the Official Solicitor’s office in early course to notify her staff of the urgent application and to discuss any pressing issues. In such a case, an email should be sent marked in the subject line ‘URGENT: for the attention of a healthcare and welfare lawyer’ to the healthcare and welfare inbox [email protected] (see bit.ly/OS-PD-Feb-21). Additionally, para 15 of the Guidance provided by the Vice President dated 17 January 2020 provides that ‘Lawyers at the Official Solicitor’s office are available to discuss applications in relation to medical treatment before an application is made. They should be given as much notice as possible of any application. Any enquiries about adult medical and welfare cases should be addressed to a lawyer in the healthcare and welfare team at the Office of the Official Solicitor, Post Point 0.53, 102 Petty France, London SW1H 9AJ, telephone 020 3681 2756, email: [email protected]. In urgent cases please phone to alert a lawyer in the healthcare and welfare team and do not rely solely on email communication as this may not receive immediate attention’. Although para 16 provides that ‘The Official Solicitor’s office is not able to offer an “out of hours” service’ this has been superseded by the 2021 Practice Note (above), which at para 25, confirms she operates an out of hours service.

6.45 The Official Solicitor’s current practice in welfare cases is that she will generally not accept an invitation of the court to act on behalf of P in welfare proceedings until her acceptance criteria are met, namely: (a)

there is evidence or reason to believe that P lacks capacity to conduct the legal proceedings;

262

Going to Court 6.46 (b) (c)

(d)

the Official Solicitor is invited to act as litigation friend by the court order; the Official Solicitor is litigation friend of last resort, i.e. there is no other person that is suitable to act because they cannot fairly and competently conduct proceedings on behalf of P or a protected party, or they have an interest that is adverse to P or the protected party;1 there is security for the costs of legal representation of P which the Official Solicitor considers satisfactory, which will cover the costs of external solicitors retained on P’s behalf. The Official Solicitor does not charge for acting a litigation friend. The Official Solicitor will need to be satisfied that the costs of retaining solicitors to act for P can be settled as and when they fall due, taking into account that there may be other calls on P’s funds.2

In serious medical treatment cases, there is no requirement that there is no alternative litigation friend.3 The established practice for funding serious medical treatment cases is that the Official Solicitor meets half her costs from her own budget and the NHS body or bodies or local authority which brought the proceedings (or which is responsible for the treatment in question) pays the other half.4 1

2 3 4

Family members may be unsuitable because of a potential conflict between their views and those of P; however it is open to the Court of Protection to appoint a lay litigation friend. In our experience, this is particularly so where P is a young person (for example in their early 20s) and a parent is appointed as their litigation friend on the basis that they satisfy the criteria set out in r 17.1. Para 12 of the Practice Note of the Official Solicitor. Para 14 of the Practice Note. Para 15 of the Practice Note and see also Re D (Official Solicitor’s Costs) [2012] EWHC 886 (COP). See para 6.61 below.

6.46 COP Practice Direction 1A (‘Participation of P’) points out that the great majority of cases before the Court of Protection relate to non-contentious matters concerning property and affairs, which can often be dealt with on paper without joining P as a party or appointing anyone to represent P (para 3). It adds that if the court concludes that P lacks capacity to conduct the proceedings and the circumstances require that P should be joined as a party, the order joining P as a party shall only take effect on the appointment of a litigation friend or, if the court so directs, on or after the appointment of an accredited legal representative (para 7).1 Provisions relating to the appointment of a litigation friend and a Rule 1.2 representative,2 namely an accredited legal representative appointed pursuant to Rule 1.2(2)(b) or a representative appointed pursuant to Rule 1.2(2)(c),3 are contained in Part 1. An accredited legal representative is defined in Rule 2.1, which sets out the factors relevant to the choice between appointing a litigation friend and an accredited legal representative to represent P as a party. Paragraph 11 of PD 1A provides slightly different) considerations. The issue will not generally arise in medical treatment decisions but is worth considering if the matter is relatively straightforward. 1 2 3

The Law Society’s website provides a list of Mental Capacity Accredited Members. The list as at 1 March 2021 can be accessed at bit.ly/LawSoc-MCA-Ac. Rule 1.2 representatives can only be appointed with their consent (per r 17.10(2)(b) of the Court of Protection Rules 2017). Who could be a friend, an IMCA, an advocate appointed under the Care Act 2014, a family member or anyone with relevant knowledge (per para 12 of PD 1A).

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6.47  Going to Court

Is permission required?1 6.47 An applicant in a medical treatment case will generally2 require permission to start3 proceedings.4 An applicant must apply for permission unless an exemption in s 50 of the MCA applies, or para 20(2) of Sch 3 to the MCA applies, or r 8.2 applies. The applicant must apply for permission when making the application in accordance with r 8.4. If part of the application is a matter for which permission is required and part of it is not, permission must be sought for the part that requires it.5 In such circumstances the applicant may file a single application form seeking both orders: see COP PD 8A (‘Permission’). The application for permission is made in form COP2 and is determined in accordance with s 50(3) of the MCA, which states that in deciding whether to grant permission the court must, in particular, have regard to: (a) (b) (c) (d) 1 2

3 4 5

the applicant’s connection with the person to whom the application relates; the reasons for the application; the benefit to the person to whom the application relates of a proposed order or directions; and whether the benefit can be achieved in any other way.

See generally s 50 of the MCA, Pt 8 of the Rules (rr 8.1–8.6). Permission is required for an application to the Court of Protection save in excepted cases: s 50(1) and (1A) of the MCA. The most important cases in which permission is not required are when the application is brought by: P themself; someone with parental responsibility for P if under 18; the donee of a lasting power of attorney; P’s court-appointed deputy; the Official Solicitor, or P’s RPR in a s 21A application. For full details see s 50 and rr 8.1–8.6. If proceedings have already been started, and a party or someone notified of proceedings seeks a different order in the same proceedings, that person does not need permission to do so: r 8.2(f). Permission is not required for application notices, as opposed to application forms to start proceedings: r 8.2(e). Rule 8.3.

Who should be named as respondents and who should be notified of the proceedings? 6.48 P must be notified of the proceedings subject to the court directing otherwise.1 The COP1 application form contains space for the identification of two categories of people: first, respondents; and secondly, other people to be notified of the proceedings. Guidance on the contents of and documents to be filed with the application form can be found in Practice Direction 9A (‘the application form’). The application form must be supported by evidence set out in either a witness statement or the application form provided it is verified by a statement of truth (PD 9A, para 9). The naming of respondents defines the parties to the proceedings. Unless the court orders otherwise, parties to the proceedings are the applicant and any person named as a respondent in the application form who files an acknowledgement of service.2 P must not be named as a respondent unless this is ordered by the court.3

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Going to Court 6.48 The applicant is required to notify other people that the proceedings have been issued.4 The specific requirements for notification are set out in Practice Direction 9B.5 There is no ‘interested party’ status in the Court of Protection: someone with sufficient interest to be a party is simply a respondent. Hence one of the purposes of notification is to provide an alert that the action has commenced to those who do not obviously have a position that requires them to be a party, but who are closely enough connected with the subject of the case that they might want to apply to become a party. P’s family members should not necessarily be named as respondents, nor even notified if P refuses to share information with them. If P has capacity to make decisions about sharing their personal information, and refuses consent to share it with anyone, that is usually decisive; even if P does not have such capacity, their wishes on this issue should be given considerable weight. Applicants should consider carefully whether they reasonably believe that such relatives have an interest which means that they ought to be heard or notified.6 Where the medical issue involves a dispute between relatives and clinicians about best interests, the relative will usually be named as a respondent. However, if there is no dispute, but the treatment in question requires court authorisation, relatives may be worried and upset by being named as a respondent when this is unnecessary. If they elect not to be parties, they can still make their views known to the court, through the applicants or the Official Solicitor. Where practicable, applicants should canvass with relatives their preferred level of involvement in the proceedings. If there is no problem with sharing information with them, and the case is not urgent, the best approach will often be merely to notify the relative, explaining that if they wish to make arguments of their own to the court (and will therefore need to be a party) they should let this be known. In serious medical treatment cases, an organisation which is, or will be, responsible for providing clinical or caring services to P should usually be named as a respondent (where it is not already the applicant in the proceedings), as it is likely to have a sufficient interest in the proceedings and its involvement is likely to be desirable for the purpose of the court dealing with the application. Each case is however different, and the decision as to who should be named as a respondent will be dictated by the facts of the individual case. Regarding when a party who is joined should be discharged, Lieven J in London Borough of Southwark v P7 held that her starting point was to facilitate P’s participation in the proceedings, and have at the forefront of her mind P’s best interests. On the particular facts of that case, the court held that P’s best interests were served by AA not being a party. Although this case is a useful illustration of how the court will approach the issue of a party being discharged, it is unlikely that this will be a prevalent feature in serious medical treatment applications. Finally, consideration may need to be given regarding whether individual applications concerning two (or more) Ps should be consolidated. The authors have experience of such cases involving two Ps (who were siblings) where welfare decisions needed to be made, and where it was agreed that it would be just and a proportionate cost for this case management step to be taken. It is unlikely that this will be relevant in the vast majority of serious medical treatment decisions, but is raised for completeness. If an application 265

6.48  Going to Court for consolidation is considered appropriate on the facts of a particular case, reference to r 3.1(2)(f) of the Court of Protection Rules 2017 (to be read in conjunction with r 1.1) would be needed. 1 2 3 4 5

6

7

Rule 9.9, subject to r 7.11 and see para 6.28 above. Rule 9.13(1)(b). Rule 9.13(4). Rule 9.10. Entitled ‘Notification of other persons that an application form has been issued’ (effective from 1 December 2017). The key requirement is that the applicant must seek to identify at least three people who are likely to have an interest in being notified that an application form has been issued: para 4. Para 7 gives a ‘list of people ordered according to the presumed closeness in terms of relationship to P’. There is no requirement separately to ‘notify’ someone who has been named as a respondent: para 3. Support for this proposition is provided by the very fact that Practice Direction 9B, ‘Notification of other persons that an application form has been issued’, contemplates circumstances in which it will be appropriate merely to notify close relatives rather than to name them as respondents: see PD 9B para 5. [2021] EWCOP 46 following a successful appeal to the Court of Appeal, P’s mother (AA) having been discharged by Hayden J in Re P (Discharge of Party) [2021] EWCA Civ 512.

Level of judge 6.49 Paragraph 19 of the Guidance issued by the Vice President dated 17 January 2020 titled ‘Allocation of the case’ provides that where a decision has been made to pursue an application to the court in relation to a serious medical treatment decision or in respect of a case involving an ethical dilemma, in an untested area, the proceedings (including permission, the giving of any directions, and any hearing) must be conducted by a Tier 3 judge, unless the Senior Judge or a Tier 3 judge determines to the contrary.1 Paragraph 20 thereafter provides that in any other case, the expectation is that the court, on making case management directions, on issue, will in gatekeeping under para 2.4(1)(a) of Practice Direction 3B have regard, in particular, to: (a) (b) 1

The seriousness of the consequences for P of the proposed treatment decision(s); The seriousness of the interference with the ECHR rights of P involved the proposed treatment decision(s).

Practice Direction 3A, para 2(a) and 3. Practice Direction 2A defines tiers of judge. See bit.ly/ HMC-PD2A.

Starting proceedings – non-urgent How are proceedings started? 6.50 Proceedings are started by filing an application form (COP1).1 The COP1 application form itself indicates what information is required in it, and includes a permission section (section 6) which must be addressed.2 The following documents must also be filed with the court along with the application form, unless this is impractical, or the court has directed otherwise: ●● ●●

COP1B: Welfare annex to application form. COP3: Assessment of capacity form,3 to be completed by a medical / care professional rather than a lawyer. 266

Going to Court 6.51 ●● ●● ●● ●●

COP24: Witness statement (unless all information is provided in the other forms). Any other documents referred to in the forms (for example, clinicians’ reports, minutes of best interest meetings).4 A position statement. A copy of the proposed final order and terms of a transparency order.

The forms are long and repetitive. All required information must be provided, but – contrary to appearances – the substance of the information is more important than its form.5 Applicants should not worry that they will be caught out by not having provided the information in the right place. 1

2 3

4 5

Standard form COP1 should be used (except in proceedings under s 21A of the MCA). Note the distinction between an application form (COP1) and an application notice (COP9), which is used to make an application within proceedings. The requirements for a COP9 application notice are set out in Practice Direction 10A (‘Applications within proceedings’). The requirements derive from r 9.3 onwards, and Practice Direction 9A, ‘The application form’. Note Practice Direction 9A at para 14: ‘If the applicant is unable to complete an assessment of capacity form (as may be the case, for example, where P does not reside with the applicant and the applicant is unable to take P to a doctor, or where P refuses to undergo the assessment), the applicant should file a witness statement with the application form explaining: (a)  why he has not been able to obtain an assessment of capacity; (b)  what attempts (if any) he has made to obtain an assessment of capacity; and (c) why the applicant knows or believes that P lacks capacity to make a decision or decisions in relation to any matter that is the subject of the proposed application.’ But note that the court will not want voluminous medical records. See r 9.1(2): ‘The appropriate forms must be used in the cases to which they apply, or with such variations as the case requires, but not so as to omit any information or guidance which any form gives to the intended recipient.’

6.51 The application form and accompanying documents must provide sufficient detail about the case so that the parties and the court can identify the issues and decide on the case management needed to take it to a final hearing. The information required will of course vary case-by-case, but the following points will usually need to be addressed: ●● ●● ●● ●● ●● ●● ●● ●● ●● ●●

P’s current circumstances and the medical issue arising; P’s background; views of treating clinicians as to capacity and best interests; any past and present wishes and feelings expressed by P; views of family members; views of any clinicians giving second opinions, or experts who have been consulted so far; views of any independent mental capacity advocate (‘IMCA’);1 summary of attempts to reach agreement and why a court application is necessary; how urgently the case needs to be heard for (1) directions and (2) final hearing; what directions are sought in advance of the first hearing.

The forms do not have an obvious space for a summary narrative which would make it easy for a reader to understand the nature of the case quickly. However, such a narrative can be provided, for example in a witness statement, which can be referred to as appropriate points on the forms, or a separate document.2

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6.51  Going to Court In accordance with r 9.6, the applicant must serve a copy of the application form on any person who is named as a respondent in the application form, together with copies of any documents filed in accordance with r 9.4 and a form for acknowledging service. P must be notified that an application form has been issued, unless the requirement to do so has been dispensed with.3 Where P is to be represented by a litigation friend in a non-urgent medical treatment case, it may be appropriate to consider dispensation, for example where providing notification to P would be either futile or distressing.4 However, there should usually be someone who knows P well enough to explain why an application is being made. Respondents and people notified of an application must file an acknowledgement of service or notification if they want to take part in proceedings.5 1 2 3 4 5

See s 35 of the MCA onwards. Some solicitors file an Application Document which effectively sets out the background facts and grounds for the application, which is helpful. Rule 9.9. Such an application would be appropriate where, for example, P is in a permanent vegetative state or a minimally conscious state; or where notification by the applicant is likely to cause significant and disproportionate distress to P. Rule 9.13(1)(b).

Starting proceedings – urgent 6.52 Practice Direction 10B1 allows for an oral application at the Royal Courts of Justice to be made before proceedings have been begun and even before any of the COP forms have been drafted. The applicant should take steps to advise the respondent(s) of the application, unless justice would be defeated if notice were given.2 Applicants should take all reasonable steps to make even urgent applications within court hours: such applications will normally be dealt with at court, although cases of extreme urgency may be dealt with by telephone.3 During the Covid-19 pandemic, a number of urgent hearings have also been undertaken by video conferencing (for example Microsoft Teams). An out-of-hours application requires a greater level of urgency. Urgent applications, especially out-of-hours, should be avoided by pursuing applications promptly.4 Theis J provided guidance on this issue in Sandwell and West Birmingham Hospitals NHS Trust v CD,5 in which she highlighted various unsatisfactory aspects of the arrangements for the out-of-hours hearing she had conducted, which concerned a best interests decision as to whether the patient should receive life-sustaining treatment. Whilst recognising that the decision as to when to make an application can be difficult, she concluded: ‘[36] … those considering making such applications should err on the side of making applications earlier rather than later. By doing so the necessary safeguards will be put in place in advance to support an effective hearing taking place, rather than risk what happened here, where those important safeguards had to be put in place as the hearing unfolded (such as involvement of the [Official Solicitor], ensuring the parents had the documents the court had and somewhere private from where they could participate in the hearing). This was particularly difficult in this case due to the time when the application was made, namely late on a Friday afternoon into the evening. 268

Going to Court 6.53 [37] It must have been clear from the 17 June that there was an issue relating to this between the Trust and the parents; the medical records record the Trust sought legal advice then. The issuing of an application would not prevent efforts continuing to seek to resolve matters; they can, and should, run in parallel. But importantly, issuing the application earlier would have meant it was more likely there would have been an effective on notice hearing, with all parties being represented and their art 6 rights being fully protected.’ In that case, taking steps to make the application earlier could have allowed for the parents’ solicitors to secure public funding to enable them to be represented at the hearing; and for the Official Solicitor to be invited to represent the patient, thus allowing the Official Solicitor to see the papers and start making enquiries at the earliest opportunity before attending the hearing. Theis J made clear that these observations, although made in the context of an application concerning an adult in proceedings in the Court of Protection, would apply equally in similar proceedings under the inherent jurisdiction concerning medical treatment or the withholding of medical treatment for a child.6 1 2 3 4 5 6

Entitled ‘Urgent and interim applications’. See bit.ly/HMC-PD10B. Ibid, para 6. To the extent that para 1 suggests that, as a matter of course, notice will not be given to the respondent(s), it is misleading. Ibid, para 2. Ibid, para 4. [2014] EWCOP 23. Para 40 – where the relevant provisions in Pt 12 of the FPR 2010 and PD 12E Urgent Business apply. See bit.ly/HMC-PD12E-Urg.

6.53 Urgent applications are generally arranged by counsels’ clerks making contact with the security office at the Royal Courts of Justice.1 Out-of-hours applications must be arranged through the RCJ duty security officer who in turn will contact the clerk to the duty judge. If it is likely (as it usually will be) that P will need to be represented by the Official Solicitor as litigation friend, the Official Solicitor should be contacted directly.2 An application notice using form COP9, evidence in support and a draft order should be filed with the court in advance of the hearing wherever possible.3 If an application is made before the application notice has been filed, a draft order should be provided at the hearing, and the application notice and evidence in support must be filed with the court on the next working day or as ordered by the court.4 1 2

3 4

During court hours, the office of the Clerk of the Rules – 0207 947 6543 (PD 10B, para 2 gives the telephone number 0300 456 4600); out of hours, the security office – 020 7947 6000: PD 10B para 3. Telephone number 020 3681 2751 (operated from 9am–5pm). Additionally, para 25 of the Practice Note of the Official Solicitor dated 3 February 2021 provides that ‘If an urgent serious medical treatment application is made to the urgent business judge out of hours then it will be a matter for that judge whether the involvement of the Official Solicitor is required and, if so required, the judge will take steps to ensure that contact is made with the Official Solicitor’s out of hours lawyers’: see bit.ly/OS-PD-Feb-21. PD 10B, para 7. PD 10B, para 8.

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6.54  Going to Court 6.54 Where the exceptional urgency of the matter requires, an application may be started without filing an application form if the court allows it (but where time permits an application should be made in writing). In such a case an application may be made to the court orally.1 Urgent hearings may take place by telephone,2 or more commonly during the Covid-19 pandemic by video conferencing. Indeed, extremely urgent out-ofhours cases can be dealt with on hearing the applicant alone, without notice to the other parties. This is not desirable, and such extreme urgency will need to be clear and justified when the application is presented to the court.3 Careful consideration should be given as to whether the circumstances justify such a course, as there may be judicial criticism if a without notice application is made where the circumstances do not justify it.4 Where an application is brought by an NHS Trust in circumstances where there is a dispute with family members as to the appropriateness of a planned course of medical treatment, it will often be the case that the family members are on site at the hospital. If so, in cases of extreme urgency it is likely to be appropriate to attempt to provide the family members with facilities to speak to the judge by telephone or video conferencing, as well as the relevant treating clinicians, often together. 1 2 3 4

PD 10B, para 9. PD 10B, paras 11 and 12. If there is no facility to record an out of hours without notice telephone hearing then a note of the hearing should be made by the applicant and provided to the judge for approval. See, for example, the comment of Charles J in B v A [2012] EWHC 3127 (Fam).

6.55 If an order is made without notice to any other party, para 6 of PD 10A applies such that the order will ordinarily contain: (a) an undertaking by the applicant to the court to serve the application notice, evidence in support, and any order made on the respondent and any other person the court may direct, as soon as practicable, or as ordered by the court; and (b) a return date for a further hearing at which the other parties can be present. It should not therefore be assumed that an extremely urgent telephone hearing will ordinarily lead to a final order, as the expectation will be that it will constitute a holding position until the matter can be brought back to court on notice to the appropriate respondents. In extremely urgent serious medical treatment cases there may be circumstances where such a course is not indicated, because the interim order will necessarily in effect be a final order; for example, in cases where the court approves a course of treatment or surgery to take place immediately in a patient’s best interests, and there is nothing further to decide. The fact that such orders may prove to be final highlights the importance of putting the appropriate parties (including the Official Solicitor) on notice where possible, and also the importance of bringing applications in a timely way, rather than waiting for extremely urgent situations to develop. 6.56 Where an extremely urgent out-of-hours application is brought, the judge’s clerk will often liaise directly with counsel’s clerk to arrange a telephone or video hearing with the judge. While the court may be prepared to proceed on the basis of less written information than it would normally require, those involved should: ●●

obtain as much in writing as possible (whether witness statements, doctors’ reports or even an attendance note of a lawyer’s conversation with the relevant clinician); 270

Going to Court 6.56 ●●

ensure that instructions to counsel are accurate and detailed: in some extremely urgent cases the ‘hearing’ may be a telephone conversation between the judge and counsel for the applicant; and the judge may have to make a decision on the basis of counsel’s oral submissions, on instructions, alone; attempt to make potential witnesses available should the judge wish to speak to them on the telephone.

●●

Paragraph 24 of the Guidance provided by the Vice President dated 17 January 2020 provides that in urgent hearings in medical treatment cases, the following steps should be taken: ‘a. proper arrangements should be made for family members to be able to participate in the hearing; ‘b. the Official Solicitor’s office should be alerted so that (if possible) [she] is in a position to respond promptly. It is to be emphasised … Official Solicitor does not offer an ‘out of hours’ service.[1] The Official Solicitor is prepared in principle to attend very urgent hearings as prospective litigation friend where the caring organisation agrees to pay half of [her] costs but ideally the Court should be asked to make an urgent order in respect of P’s representation if time permits; ‘c. the Urgent Applications Judge and the Clerk of the Rules are to be alerted at the earliest opportunity that an application is likely; ‘d. a Word version of any draft order should be made available; ‘e. any statements in support of an application relating to life-sustaining treatment must set out the salient details of the relevant medical history which precedes the application and an assessment of any material which illuminates P’s quality of life; ‘f. any IMCA or advocate report(s) relating to the treatment decision which are in existence should be filed; ‘g. Usually, and particularly if written evidence is limited or incomplete, one or more treating clinician should attend in person to provide evidence for the court. If such is not possible attendance may be permitted by telephone, or by video link, to provide evidence for the court.’2 Thereafter, para 25 provides that in an urgent hearing, the court will take every opportunity it can to ensure that P is represented before granting substantive relief. Only in a truly exceptional case would the court grant substantive relief without representation. The court will otherwise only grant such interim relief as is urgently required to secure P’s interests, and the following steps should then be taken: (a) (b)

1

the case should then be listed, avoiding delay, at the earliest opportunity to permit full consideration of the evidence and representations on behalf of P; the represented applicant’s advocate/legal representative should prepare a note of the hearing as soon as is reasonably practicable afterwards, and file a copy of the note with the court and serve a copy upon (a) the Official Solicitor or any other litigation friend appointed to act for P and (b) any respondent who was not present at the hearing. Since 2021 the Official Solicitor has provided a limited out of hours service for medical treatment cases. Where an urgent serious medical treatment application is made to the urgent business judge out of hours then it will be a matter for that judge whether the involvement

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2

of the Official Solicitor is required and, if so required, the judge will take steps to ensure that contact is made with the Official Solicitor’s out of hours lawyers: see bit.ly/OS-PD-Feb-21. See bit.ly/VP-Guide-Jan-20.

6.57 On an urgent application, especially out-of-hours, the court is likely to do the minimum necessary to protect P’s position until a further hearing. For example: ●● ●● ●● ●● ●●

an interim recital that there are reasonable grounds to believe P lacks capacity to make the decision in question; an interim declaration that life-saving treatment (as specified in the order) is in the patient’s best interests until further order; an order that the matter return to court within a short period of time; an order (or undertaking) that the applicant issue the application within a short period of time; if only oral information or evidence has been provided, an order requiring the applicant to file written evidence which verifies it.

Counsel for the applicant will usually also be required to draft and lodge the order made. Where the emergency application wholly deals with the matter (for example a declaration authorising a caesarean section), it may be pragmatic and proportionate to request that the order dispenses with the requirement for the COP1B and COP3, and undertake to file the COP1 alone.

First hearing and subsequent directions hearings 6.58 The following is a checklist of matters which should be considered and reflected in the order where appropriate: ●● ●● ●● ●● ●● ●● ●●

●● ●● ●● ●● ●●

Privacy, publicity and anonymity: Is this (and are future hearings) in private or public? If in public, what should the terms of a transparency order be? Level of judge: Is this appropriate for the type of case? Permission: Does the applicant need/have permission to make the application? Should P be made a party/notified of proceedings? Litigation friend or r 1.2 representative for P/any other party. Parties: Are the appropriate parties involved and are they appropriately designated (that is, as applicant and respondents)? Involvement of others: Does the involvement of other people (for example, family members who do not wish to be parties) need to be facilitated? Such facilitation should include whether intermediaries or court interpreters (for example) are required to ensure engagement and understanding. Additionally, short of party status, some persons may seek permission to see certain documentation (for example family members who do not seek party status, but who wish to see the treatment plan). Documents: Should anybody, whether a party or not, be required to provide documents, to whom, and by when?1 Interviewing P and accessing records.2 Factual evidence.3 Expert evidence.4 Official Solicitor’s attendance note.5

272

Going to Court 6.58 ●● ●● ●● ●● ●● ●● ●●

Any meeting between the parties and their lawyers to attempt to resolve issues.6 Further interim hearing/s to deal with further directions or preliminary issues. Final hearing. Housekeeping before subsequent hearings.7 Interim declarations. Costs (including costs of the Official Solicitor if sought). Liberty to apply.8

Intermediaries (noted above) are communication specialists who facilitate communication between professionals in the legal system and vulnerable people. The intermediary carries out a full communication assessment and makes recommendations in their court report as to how P or any vulnerable party or witness can best understand the proceedings and their role in them, express themselves throughout the proceedings, put their evidence before the court and instruct their legal representatives. Intermediaries can also recommend adaptations to the court process which will enable them to attend/participate in any hearing. It is important to note that an intermediary may be appropriate whether or not the vulnerable person has capacity to conduct proceedings, but where there is a litigation friend appointed, it would usually be the litigation friend who progresses this if necessary. Only HM Courts & Tribunals Service Appointed intermediaries can be appointed. HM Courts & Tribunals Service will provide funding – or on some occasions the Legal Aid Agency – where an order of the court is in place for intermediary provision.9 Procedural guidance has been provided for the conduct of registered intermediaries.10 See A Local Authority v Mother11 for a case indicating some of the responsibilities on an intermediary to ensure they can act competently. 1

2

3 4

Disclosure is dealt with in Pt 16 of the Rules (rr 16.1–16.8). But in medical treatment cases it is the practice to specify what category of documents should be provided by and to whom, rather than to order ‘standard disclosure’. It is likely to help all concerned if records are ordered to be provided in paginated form from the outset. If there is concern that some documents should be withheld from someone, provision can be made for all the documents to be supplied to the Official Solicitor in the first instance. The Official Solicitor can then take a view about further disclosure in P’s best interests; and any dispute can be raised before the court if necessary. In cases where time is of the essence, parties may seek a direction that records be sent directly to experts. Any order against someone who is not present or represented at the hearing and who has not consented to what is proposed should be subject to liberty to apply, and if the documents are sought from third parties, the disclosure should be ordered within a separate third party order. The Official Solicitor will often engage a solicitor who is in the area local to P so that they may attend upon P (usually in hospital) in order to obtain P’s wishes and feelings regarding the issues before the court. An attendance note is thereafter filed and served and often provides very valuable assistance to the court. As regards experts attending upon P, the order which grants permission for expert evidence to be obtained in accordance with Pt 15 of the Court of Protection Rules 2017, also usually grants permission to the expert to inspect and examine documents relating to P, and to attend upon P. Part 14 of the Rules (rr 14.1–14.14) and Practice Direction 14A (‘Written evidence’) deal with miscellaneous points about factual evidence. See also Practice Directions 14B (‘Depositions’) and 14D (‘Witness summons’). The court has the power to order reports from Court of Protection visitors and NHS bodies under s 49 of the MCA and rr 14.24–14.25, see Practice Direction 14E (‘Section 49 reports’). But in medical treatment cases the parties will generally be permitted to instruct experts or a single joint expert, as to which see Pt 15 of the Rules (rr 15.1–15.13) and Practice Direction 15A (‘Expert evidence’).

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The Official Solicitor as litigation friend may provide a statement (usually in the form of an attendance note, as aforesaid) once all the other evidence is available – particularly the treatment plan, as P will ordinarily need to be asked about its content (in order for their wishes and feelings regarding the plan to be ascertained). 6 See Chesterfield Royal Hospitals NHS Foundation Trust & Derbyshire Healthcare NHS Foundation Trust v TS [2021] EWCOP 41, where a meeting between the parties in advance of the listing, where questions were asked of the treating clinicians, successfully narrowed the issues such that the clinicians were no longer required to give oral evidence: the court specifically referenced the care involved in preparation of the case. 7 For example, preparation, service and filing of the bundle and position statements/skeleton arguments/bundle of authorities, and a chronology and legal framework (which should be agreed between the parties if at all possible). 8 Note that the phrase ‘liberty to apply’ should not be used without explanation when it may be relevant to people who are unlikely to know what it means: LLBC v TG [2007] EWHC 2640 (Fam) per McFarlane J at para 56. 9 The COPR do not cover intermediaries but by virtue of COPR r2.5, the court can apply the Family of Civil Procedure Rules (FPR and CPR). FPR Pt 3A was introduced in November 2017 and requires the court to consider making ‘participation directions’ if any party or witness is vulnerable. CPD 1A (referenced in CPR 1.6), introduced in April 2021, also sets out the steps that need to be taken to ensure that all parties ‘can participate fully in proceedings, and that parties and witnesses can give their best evidence’. This finally brings the Civil courts into line with the Criminal and the Family Procedure rules and directions relating to vulnerability and participation where intermediaries have been a common resource for many years. In the Court of Protection, these provisions are in addition to COPR which requires the court to consider P’s participation (see para 6.26 above). Intermediaries have worked in the Civil Courts preApril 2021, where judges have considered their assistance necessary to meet the Overriding Objective. In the Family Courts it is common for parents who lack capacity to have their communication supported by an intermediary who can help them to follow the court process and who assists communication when they give their evidence. It is often the case that the parent who lacks capacity will still want to participate, even where the decisions rest in the hands of the Official Solicitor. In cases where there are mental health, learning or physical disability or neurodevelopmental communication difficulties, intermediaries can bridge the communication gap. In one example a vulnerable person with Motor Neurone Disease was assisted in participating via the provision of eye gaze assistive technology designed for those without speech or controlled physical movements. He participated remotely with intermediary assistance from his hospice. As part of the preparation for the final hearing it is advisable to include provision for a ‘Ground Rules Hearing’ before P gives evidence or provides the court with information. Further guidance and information about the Appointed Intermediary Service will be available on GOV.UK in April 2022. See www.theintermediarycooperative. co.uk for further information. (With thanks to Nicola Lewis at the Intermediary Co-operative for her input on this issue.) 10 https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_ data/file/955316/registered-intermediary-procedural-guidance-manual.pdf. 11 [2021] EWHC 2794 (Fam): costs were ordered against the intermediary whose conduct had caused the adjournment of a final hearing.

Final hearings 6.59 In relation to evidence at a hearing, see Part 14 of the Rules (rr 14.2–14.14) and Practice Direction 14A (‘Written evidence’). Paragraph 33 onwards provides guidance as to the form and content of witness statements and Annex 2 deals with evidence by video link. During the Covid-19 pandemic, evidence by video link has become the norm as opposed to the exception. What to expect at a final hearing? The court will usually ask the applicant to introduce the parties and attend to housekeeping matters, including the making and/or the terms of a transparency order.

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Going to Court 6.59 P should be asked if they wish to speak with the judge prior to the commencement of the hearing, and this will usually be facilitated by the court. The court should be notified of this prior to the commencement of the final hearing – usually by emailing the clerk to the judge hearing the application (with an explanation of what is proposed). During the Covid-19 pandemic, judges have most often ‘attended’ upon P whilst P is in hospital and the judge is in court, usually with counsel and the solicitor for P also being present. That part of the hearing will otherwise be in private.1 The applicant will usually then be asked to provide a short opening (usually based on a written position statement that has already been filed prior to the hearing). The applicant will then call its witnesses who will then be questioned by the other parties and the judge (as appropriate). Sometimes clinicians or experts ‘hot tub’ by providing their evidence together if there is a particular issue which they can speak to, and which may assist the court to have a more ‘conversive’ approach to the evidence. This should be raised as a preliminary issue by the parties if this is considered an appropriate approach. Following the applicant’s evidence, the respondent’s evidence will follow. Whether family members are parties or not, the court is keen to hear from them and often a degree of informality is adopted to ensure that they feel comfortable in providing their views to the court. Following the conclusion of the evidence, the applicant will provide its closing submissions, followed by the other parties and the Official Solicitor will ordinarily go last. Often the Official Solicitor will be unable to provide a clear position at the outset of the evidence, and it is only in closing that a final stance will be provided on behalf of P. Due to the urgency of many medical cases, an extempore judgment will often be given by the court; if that is not possible, and time allows (as regards the medical issues before the court) judgment will be reserved, with a return date as soon as practicable. Sometimes, if the treatment is urgent, but the court wishes to provide a written judgment, it will confirm what order it intends to make with short reasons, with a detailed judgment to follow. Paragraph 26 of the Guidance issues by the Vice President dated 17 January 2020 provides that in every case, in addition to any declaration made under s 15(1)(a) of the MCA, the court will consider whether the relief sought should be granted in the form of a declaration of lawfulness under s 15(1)(c) and/or a decision under s 16(2)(a). In so doing, the court will have regard to the statutory purpose of s 16(2)(a) as being to empower the court to make a decision on behalf of P in relation to a matter in respect of which P lacks capacity. Matters to consider including in a final order are: ●● ●● ●● ●● ●● ●●

Does publication of information need to be authorised or restricted? The terms of any final declarations and orders.2 Is a review hearing necessary? Inter partes costs (including costs of the Official Solicitor if sought). Detailed assessment of publicly funded parties’ costs. Is liberty to apply appropriate?

Additionally, prior to judgment being handed down, practitioners may wish to consider whether it would be appropriate for a ‘user friendly’ judgment or letter to be requested from the court to aid P’s engagement in the proceedings. 275

6.59  Going to Court An example of both issues being addressed by the court can be found in the decision of HHJ Williscroft in A Local Authority v P.3 Although this was a judgment regarding capacity (residence, care and contact), it is nonetheless a good example of the court writing its judgment in clear terms, and where P was provided with the outcome of the decision in a letter (annexed to the judgment). Such an approach is clearly fact specific and will not be applicable in a number of medical cases (for example, where P is so unwell as to derive any benefit). 1 2

3

See Re AH (Serious Medical Treatment) [2021] EWCA Civ 1768 and para 6.28 above. The former practice of making a declaration as to the lawfulness of providing treatment under s 15 of the MCA has been mostly superseded by orders which provide that the court has given its consent to the treatment under s 16, following the observations of Sir James Munby P in the Court of Appeal in N v ACCG: see N v ACCG [2017] UKSC 22. [2021] EWCOP 48.

Costs1 6.60 In medical treatment cases the general rule is that there is no order for costs, save for the established practice that in serious medical treatment cases, half of the Official Solicitor’s costs are met by the appropriate NHS body.2 However, the court may depart from the general rule. Rule 19.5 provides: ‘(1) The court may depart from rules 19.2 to 19.4 if the circumstances so justify, and in deciding whether departure is justified the court will have regard to all the circumstances including— (a) the conduct of the parties; (b) whether a party has succeeded on part of that party’s case, even if not wholly successful; and (c) the role of any public body involved in the proceedings. (2) The conduct of the parties includes— (a) conduct before, as well as during, the proceedings; (b) whether it was reasonable for a party to raise, pursue or contest a particular matter; (c) the manner in which a party has made or responded to an application or a particular issue; (d) whether a party who has succeeded in that party’s application or response to an application, in whole or in part, exaggerated any matter contained in the application or response; and (e) any failure by a party to comply with a rule, practice direction or court order.’ Where costs over and above the standard have been ordered in medical cases (or obtained in negotiation following an application), this usually reflects poor conduct on the part of the health body making the application. The most frequent bases of successful costs claims are the failure to make an application at all (forcing a family member to make it) and failure to make an application at the proper time, so that the Official Solicitor has not been able to carry out all necessary enquiries and represent P fully in their best interests, thus interfering with P’s Art 6 and 8 rights.3

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Going to Court 6.61 Where the court is satisfied that it is appropriate to depart from the usual rule, the courts have demonstrated resistance to detailed arguments about who should pay for precisely what, approving instead a ‘broad brush’ approach.4 1 2

3

4

Part 19 (rr 19.1–19.14) and Practice Direction 19A (‘Costs in the Court of Protection’) and Practice Direction 19B (‘Fixed Costs in the Court of Protection’). This is not provided for in the general rule for personal welfare cases (r 19.3) which provides that ‘Where the proceedings concern P’s personal welfare the general rule is that there will be no order as to the costs of the proceedings or of that part of the proceedings that concerns P’s personal welfare.’ It is a long-standing practice, however: see para 6.61 below. The Official Solicitor will usually seek a recital to the order (in addition to provision being contained in the order) that the applicant undertakes to pay 50% of the reasonable costs of the Official Solicitor. See MR v SR (application for costs) [2016] EWCOP 54; North Somerset Council v LW [2014] EWCOP 3. The same practice applies in welfare cases: see London Borough of Hillingdon v Steven Neary [2011] EWHC 1377 (COP) per Jackson J at para 196: ‘The fact that an individual does not bring a matter to court does not relieve the local authority of the obligation to act, it redoubles it.’ Manchester City Council v G [2011] EWCA Civ 939; MR v SR (Application for Costs) [2016] EWCOP 54.

Costs of Official Solicitor 6.61 In medical treatment cases the Official Solicitor’s practice is to seek agreement from the applicant or appropriate NHS body to pay half of her costs prior to consenting to act as litigation friend. If a party were to contest this, the Official Solicitor would be likely to rely on r 19.191 and the case of A Hospital v SW & A PCT.2 SW was a decision under the High Court’s inherent jurisdiction in which costs were at the general discretion of the court. The President of the Family Division heard detailed argument for and against the award of costs to the Official Solicitor in medical treatment cases and approved an approach whereby the payment of half the Official Solicitor’s costs by the applicant is seen as an appropriate starting point.3 The same approach to the Official Solicitor’s costs has been held to apply under the Court of Protection Rules: as stated by Jackson J: ‘I therefore consider that the approach of Sir Mark Potter should continue to be followed, namely that in these cases an order for half costs is a reasonable starting point, from which the court can depart if there is reason to do so. I accept that to exercise discretion in this way in effect displaces the “general rule” in cases in which the Official Solicitor acts, but the pragmatic basis for this compromise is as strong now as it ever was. To disturb longstanding practice would introduce uncertainty into every case, and foster costs arguments between public bodies. It would make it very difficult for public bodies to budget in individual cases and for the Official Solicitor to budget generally.’4 The rule has subsequently been applied in North Somerset Council v LW5 where the Official Solicitor sought and was awarded the whole of his costs of two days of hearing which were ineffective because of the conduct of the applicant trust, and half the costs of the effective day in accordance with usual practice. 1

‘Any costs incurred by the Official Solicitor in relation to proceedings under these Rules or in carrying out any directions given by the court and not provided for by remuneration under rule 19.13 [Remuneration of a deputy, donee or attorney] shall be paid by such persons or out of such funds as the court may direct.’ The effect of r 19.13 appears to be that the general rule

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2 3

4 5

(that there should be no order for costs) does not apply to the Official Solicitor’s costs, and that the Official Solicitor’s costs are simply within the court’s discretion. [2007] LS Law Med 273. See para 65 (‘On the assumption, as is generally the case, that the Official Solicitor acts, not as an adversary but as a facilitator, and that the part which he plays is helpful rather than obstructive in the court proceedings, it appears to me that the ‘half costs’ solution is, in principle at least, a reasonable starting point in cases of this kind.’) and para 67 (‘In my view, it is permissible for the court to adopt an initial approach in favour of ‘half costs’ solution …’). NHS Trust v D [2012] EWHC 886 (COP) at para 15. [2014] EWCOP 3.

Appeals1 6.62 Permission is required to bring an appeal.2 In determining to whom an appeal lies, there is an internal hierarchy within the Court of Protection: First instance level District judge

Appeal level

Circuit judge High Court judge

High Court judge Court of Appeal

Circuit judge

In the first two cases a second appeal lies to the Court of Appeal. 1 2

Appeals are dealt with in Pt 20 of the Rules (rr 20.1–20.14) and Practice Direction 20A (‘Appeals’) and Practice Direction 20B (‘Allocation of Appeals’). Rule 20.7 – except for an appeal against an order for committal to prison.

F  THE HIGH COURT’S JURISDICTION IN RELATION TO MINORS The High Court generally The High Court’s jurisdiction 6.63 The High Court has two distinct jurisdictions under which it can make medical treatment decisions about minors.1 First, there is its inherent jurisdiction.2 Secondly, it has jurisdiction under s 8 of the Children Act 19893 to make a specific issue order4 or a prohibited steps order.5 Under the inherent jurisdiction, the court can do anything that it could do in making either of those two types of order. Most, if not all, medical treatment cases can therefore be brought under the inherent jurisdiction.6 In Re JM (A Child),7 a case concerning an application by an NHS Trust seeking permission to perform urgent life-saving surgery on a child aged ten years old, Mostyn J considered whether the application, which had been brought under the inherent jurisdiction, had followed the correct procedure. Mostyn J concluded that applications in respect of medical procedures to be carried out on 16 and 17 year olds, who are able to consent to medical treatment, should be brought under the High Court’s inherent jurisdiction and not under the Children Act 1989.8

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Going to Court 6.64 JM’s case appeared to fall squarely within the terms of s 8, in that the relief sought would determine a specific question which had arisen concerning an aspect of parental responsibility. However, Mostyn J noted that if the application were to be made as a s 8 application, it would have to be issued in the Family Court and could not be issued in the High Court – with the associated consequences that any judge of the Family Court could hear the application (even a lay justice) and, crucially, it would be questionable ‘whether the Family Court has the power to grant final declaratory relief, which may well be the principal relief … which is sought’.9 Thus Mostyn J gave the following guidance: ‘[27] Therefore it seems to me that if the relief sought includes final binding declarations (which will normally be the case) then the application should be framed as a combination of an application for a specific issue order (seeking the necessary leave under s10(2)(b)) and an application for declaratory relief under the inherent jurisdiction. This will allow the application to be issued directly in the High Court where it will be listed by the Clerk of the Rules before a full time High Court Judge.’ He noted that an incidental benefit of proceeding in this way would be that the respondents to the application would be in a better position to claim legal aid.10 1

That is, persons under the age of 18. In relation to the Children Act 1989, see s 105(1) of that Act: ‘child’ means, subject to para 16 of Schedule 1 [which deals with financial provision for children], a person under the age of eighteen’. Cases under both jurisdictions are allocated to the Family Division: Senior Courts Act 1981, Sch 1, para 3(b)(ii). 2 Family Procedure Rules 2010, PD 12D, see bit.ly/HMC-PD12D. 3 Note the restrictions under s 9 of the Children Act 1989 on using s 8 orders, especially sub-section (1) (‘No court shall make any section 8 order, other than a residence order, with respect to a child who is in the care of a local authority.’) and sub-section (7) (‘No court shall make any section 8 order, other than one varying or discharging such an order, with respect to a child who has reached the age of sixteen unless it is satisfied that the circumstances of the case are exceptional.’) 4 Section 8 of the Children Act 1989: ‘an order giving directions for the purpose of determining a specific question which has arisen, or which may arise, in connection with any aspect of parental responsibility for a child’. For a s 8 application there is a standard form (C100) see bit.ly/Form-C100 but, if s 8 is being relied on at all, it would be usual to issue in the inherent jurisdiction as well, and therefore simply issue one form (C66): see bit.ly/Form-C66. 5 Section 8 of the Children Act 1989: ‘an order that no step which could be taken by a parent in meeting his parental responsibility for a child, and which is of a kind specified in the order, shall be taken by any person without the consent of the court’. 6 Although it is not unusual for proceedings to be brought both under the inherent jurisdiction and s 8 of the Children Act 1989, as indicated on documents by the headings, ‘In the matter of the inherent jurisdiction’ and ‘In the matter of the Children Act 1989’. 7 [2015] EWHC 2832 (Fam). 8 Para 24. This was affirmed by Sir James Munby in Re X (No2) [2021] EWHC 65 (Fam) at para 33. 9 Para 26. 10 Para 28.

Regional hearings 6.64 Medical treatment cases can in appropriate circumstances be allocated to a High Court judge sitting at a District Registry of the High Court rather than at the Royal Courts of Justice in London. This tends only to happen in non-urgent cases because of the special procedures at the RCJ for dealing with very urgent hearings, and the greater availability of suitable judges in London. 279

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Procedure and rules 6.65 Both the High Court’s inherent jurisdiction in relation to minors and its jurisdiction under the Children Act 1989 are subject to the Family Procedure Rules 2010.1 The Civil Procedure Rules do not apply.2 Family Division practice directions are available online.3 1

2 3

By virtue of s 32 of the Matrimonial and Family Proceedings Act 1984 and the Senior Courts Act 1981, Sch 1, para 3(b)(ii), both are ‘family business’ and therefore ‘family proceedings’: see s 75(3) of the Courts Act 2003, hence the relevant procedural rules are the Family Procedure Rules 2010. Civil Procedure Rules, r 2.1(2). www.justice.gov.uk/courts/procedure-rules/family/rules_pd_menu.

What cases should be brought to court? General issues 6.66 Although the MCA Code of Practice and the Guidance provided by the Vice President dated 17 January 2020 do not apply in the High Court, the Guidance1 neatly identifies some of the general circumstances in which medical treatment cases should be brought to court, and can be used as guidance in relation to cases adults and minors. 1

See further above at para 6.2 and see bit.ly/VP-Guide-Jan-20. See generally Chapter 4: Deciding for Others – Children.

6.67 The following additional categories of cases which should be brought to court arise specifically in relation to minors but not adults. Parental issues 6.68 These are usually manifestations of the more general category of cases in which there is a dispute about best interests. For example: ●● ●● 1 2

where parental consent is withheld for a procedure which treating clinicians believe to be in a child’s best interests and to which the child cannot give valid consent;1 where a procedure is intended to be carried out for which agreement of all those with parental responsibility is required but not forthcoming.2 For example, Jehovah’s Witness parents refusing consent to a child’s blood transfusion. See Chapter 4: Deciding for Others – Children, paras 4.25–4.30. For example, circumcision other than on medical grounds, see Re J (Child’s religious upbringing and circumcision) [1999] 2 FLR 678. See Chapter 4: Deciding for Others – Children, paras 4.17–4.19.

Local authority issues 6.69 In cases where a local authority exercises parental responsibility over a minor, it may feel unable to agree to a proposed course of action concerning the minor’s medical treatment (whether provision, withholding or withdrawal), even if it considers it to be the most appropriate course of action, and invite the relevant NHS body to make an application to court.1

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Going to Court 6.71 A local authority requires the consent of the court to make an application for any exercise of the court’s inherent jurisdiction with respect to children.2 1

2

See Re B (A Child) (Medical Treatment) [2008] EWHC 1996 (Fam) per Coleridge J at para 7: ‘So far as the local authority is concerned, they have invited the NHS Trust to make this application because although they do in fact have, as a matter of statutory law, parental authority for this child arising from the care order, they felt that that parental authority did not invest them with sufficient authority to consent to this declaration. That is a nice point. I think that they are probably right. Even if they are not right and they do have sufficient authority I think they are entirely right in this situation which has arisen in that they have taken the understandable line that they do not wish to consent to, or be seen to consent to, a declaration of this kind. I think in circumstances like this, where there is a child of this age in this kind of extreme situation, and where there is any uncertainty as to their position, the local authority is sensible to take the course that this one has.’ See Chapter 4: Deciding for Others – Children, para 4.19. Section 100(3) of the Children Act 1989.

Imposing treatment despite competent refusal 6.70 An application should always be made where it is proposed to impose treatment on a minor contrary to their competent refusal. Although a competent child may be able to consent to surgery (per s 8 of the Family Law Act 1969), Parliament has not conferred complete autonomy on young people aged 16–17 in the field of medical treatment, and there is no overriding limitation to preclude the exercise of the court utilising its inherent jurisdiction in the child’s best interests. This was recently confirmed by Sir James Munby in Re X (No 2)1 who, held that his clear and firm conclusion was that Re R (A Minor) (Wardship: Consent to Treatment)2 and Re W (A Minor) (Medical Treatment: Courts Jurisdiction)3 remained good law, and that change was a matter for Parliament, not the courts.4 1 2 3 4

[2021] EWHC 65 (Fam). [1992] Fam 11. [1993] Fam 64. Ibid, para 161. See Chapter 4: Deciding for Others – Children, para 4.13.

6.71 In determining what is in the child’s best interests, the court must consider the available treatment options before it as clinicians cannot be required to act contrary to their conscience. In Re J (A Minor) (Child in Care; Medical Treatment)1 the Court of Appeal made it clear that a court should not require any doctor so to act, and Lord Donaldson, MR held that: ‘the fundamental issue in this appeal is whether the court in the exercise of its inherent power to protect the interests of minors would ever require a medical practitioner or health authority acting by a medical practitioner to adopt a course of treatment which in the bona-fide clinical judgment of the practitioner concerned is contra-indicated as not being in the best interests of the patient. I have to say that I cannot at present conceive of any circumstances in which this would be other than an abuse of power as directly or indirectly requiring the practitioner to act contrary to the fundamental duty which he owes to his patient.’2 1 2

[1993] Fam 15. Ibid, at 26H–27B.

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6.72  Going to Court 6.72 When considering the circumstances in which an application should be made, as stated by Lady Black: ‘If, at the end of the medical process, it is apparent that the way forward is finely balanced, or there is a difference of medical opinion, or a lack of agreement to a proposed course of action from those with an interest in the patients welfare, a court application can and should be made. As the decisions of the European court underline, this possibility of approaching a court in the event of doubts as to the best interests of the patient is an essential part of the protection of human rights. The assessments, evaluations and opinions assembled as part of the medical process will then form the core of the material available to the judge, together with such further expert and other evidence as may need to be placed before the court at that stage’.1 1

An NHS Trust v Y [2018] UKSC 46 at para 125. See Chapter 4: Deciding for Others – Children, para 4.11.

6.73 In cases where a ceiling of care is contemplated, and where that ceiling could potentially have very serious negative consequences for the child, it is good practice to apply to the court, particularly as without it, a clinician is at risk of considerable criticism and possibly disciplinary action by the relevant professional body if complications arise, and as stated by Lieven J: ‘a principle of good practice may have a very similar effect to a legal requirement’.1 Her Ladyship thereafter held that: ‘there are a range of cases where there does have to be Court approval, but this is where there is a clinical disagreement; possible alternative treatment of the medical condition in issue; or the decision is, in the opinion of clinicians, finely balanced. These are fact specific instances …’2 1 2

AB v CD [2021] EWHC 741 at para 72. Ibid, para 116. See Chapter 4: Deciding for Others – Children, para 4.14.

6.74 In cases where declarations as to the lawfulness of the proposed actions of the treating clinicians is required, the court ordinarily applies the helpful summary of the law provided by MacDonald J in University Hospitals Plymouth NHS Trust v B:1 ‘In Re W (A minor: Consent to medical Treatment)[2] Balcombe LJ observed as follows: “One must start from the general premise that the protection of the child’s welfare implies at least the protection of the child’s life. I state this as a general and not as an invariable premise because of the possibility of cases in which a court would not authorise treatment of a distressing nature which offered only a small hope of preserving life. In general terms however, the present state of law is that an individual who has reached the age of 18 is free to do with his life what he wishes, but it is the duty of the court to ensure so far as it can that children survive to attain that age … To take it a stage further, if the child’s welfare is threatened by a serious and imminent risk that the child will suffer grave and irreversible mental or physical harm, then once again the court when called upon has a duty to intervene.”

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1

2

‘… Within this context, law that the court must apply when determining whether to grant the relief sought by the NHS Trust is well settled and can be summarised as follows ….: i) The paramount consideration of the court is the best interests of the child. The role of the court when exercising its jurisdiction is to give or withhold consent to medical treatment in the best interests of the child. It is the role and duty of the court to do so and to exercise its own independent and objective judgment; ii) The starting point is to consider the matter from the assumed point of view of the patient. The court must ask itself what the patient’s attitude to treatment is or would be likely to be; iii) The question for the court is whether, in the best interests of the child patient, a particular decision as to medical treatment should be taken; iv) The term ‘best interests’ is used in its widest sense, to include every kind of consideration capable of bearing on the decision, this will include, but is not limited to, medical, emotional, sensory and instinctive considerations. The test is not a mathematical one; the court must do the best it can to balance all of the conflicting considerations in a particular case with a view to determining where the final balance lies. In reaching its decision the court is not bound to follow the clinical assessment of the doctors but must form its own view as to the child’s best interests; iv) There is a strong presumption in favour of taking all steps to preserve life because the individual human instinct to survive is strong and must be presumed to be strong in the patient. The presumption however is not irrebuttable. It may be outweighed if the pleasures and the quality of life are sufficiently small and the pain and suffering and other burdens are sufficiently great; v) Within this context, the court must consider the nature of the medical treatment in question, what it involves and its prospects of success, including the likely outcome for the patient of that treatment; vi) There will be cases where it is not in the best interests of the child to subject him or her to treatment that will cause increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child’s and mankind’s desire to survive; vii) Each case is fact specific and will turn entirely on the facts of the particular case; ix) The views and opinions of both the doctors and the parents must be considered. The views of the parents may have particular value in circumstances where they know well their own child. However, the court must also be mindful that the views of the parents may, understandably, be coloured by their own emotion or sentiment; x) The views of the child must be considered and be given appropriate weight in light of the child’s age and understanding.’ University Hospitals Plymouth NHS Trust v B (Urgent Medical Treatment) [2019] EWHC 1670 (Fam), para 13 and 14. See also the summary of the principles he subsequently gave in Manchester University NHS Foundation Trust v Fixsler [2021] EWHC 1426 at para 57, discussed in Chapter 4: Deciding for Others – Children, para 4.22. [1993] 1 FLR 1.

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Who should be the respondents? Body responsible for treatment or care 6.75 An organisation which is, or will be, responsible for providing clinical or caring services to the minor should usually be named as a respondent if it is not already the applicant in the proceedings. The child? 6.76 In medical treatment cases, the child should generally be named as a party (although this should be confirmed by the judge)1 and a guardian appointed to represent the child.2 The guardian is usually provided by CAFCASS.3 In some cases, CAFCASS has taken the view that its assistance is not needed.4 However, applicants should never assume that CAFCASS will not want to become involved: all medical treatment cases concerning minors should be referred to CAFCASS legal before the application is made. A guardian may not be required if a child has their own solicitor, and that solicitor considers that the child is able, having regard to their understanding, to give instructions in relation to the proceedings, and they have accepted instructions from the child to act for them in the proposed proceedings. In such circumstances, r 16.6(3)(b)(i) and (ii) of the Family Procedure Rules 2010 (circumstances in which a child does not need a guardian) is likely to be satisfied. The child would therefore directly instruct their solicitor, and CAFCASS would not be involved. A recent example is A Teaching Hospitals NHS Trust v DV (A Child).5 The case involved a competent minor who required urgent treatment for a right lung metastasis by way of right lung pulmonary metastasectomy under general anaesthetic. The surgery carried a risk of haemorrhage; the minor was a practicing Jehovah’s Witness who objected to transfusion. An order regarding the lawfulness of withholding blood products was sought by the Trust, which was granted by Cohen J, notwithstanding the arguments raised on behalf of the minor that due to his age (17) and competence, he was able to make treatment decisions without the involvement of the court. 1

2 3

FPR Practice Direction 16A (Representation of Children). See bit.ly/HMC-16A. At para 7.2: ‘The decision to make the child a party will always be exclusively that of the court, made in the light of the facts and circumstances of the particular case. The following are offered, solely by way of guidance, as circumstances which may justify the making of such an order:- …’; and from that list, for example, para 7.2(f): ‘Where there are complex medical or mental health issues to be determined or there are other unusually complex issues that necessitate separate representation of the child’. CAFCASS can also act as advocate to the court, but this is unusual. Rule 16.4 of the Family Procedure Rules 2010 provides for the appointment of a guardian for a child party. See bit.ly/HMC-Pt16. The Children and Family Court Advisory and Support Service. CAFCASS Legal, High Court team (as opposed to local CAFCASS offices) will often be involved in medical treatment cases. See Practice Direction 12E (‘Urgent Business’): see bit.ly/HMC-PD12E-Urgent. Para 4.2 provides that enquiries about children cases should be directed to the High Court Team Duty Manager at Cafcass National Office, 3rd Floor, 21 Bloomsbury Street, London, WC1B 3HF. DX: Cafcass DX 310101 Bloomsbury 11. Telephone 01753 235273 (Cafcass High Court Team) or 01753 235295 (Cafcass Legal Duty Lawyer). e-mail: HighCourtGM@ Cafcassi.gov.uk (office hours only). Enquiries should be marked ‘F.A.O. High Court Team’ or ‘F.A.O. HCT’. Para 4.3 provides that enquiries about children cases in Wales should be

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4

5

directed to the Social Care Team, Legal Services, Welsh Assembly Government, Cathays Park, Cardiff CF10 3NQ, telephone 02920 370888, fax 0872 437 7306. For example, in some cases concerning babies whose Jehovah’s Witness parents refuse consent for blood transfusions CAFCASS has not considered it necessary to act, on the basis that the child does not have ascertainable wishes and there is established case-law to assist the court as to the appropriate course of action. [2021] EWHC 1037 (Fam).

Parents? 6.77 Whether or not the child’s parents are named as parties should depend on their position in relation to the application and the level of involvement which they wish to have in the proceedings. If the proceedings are necessary because the parents object to treatment proposed for the child, they should generally be named as parties. However, if proceedings are necessary because, for example, experimental treatment is proposed for the child and the parents agree, it may be unnecessary for the parents to be named as parties, although the court will expect to be kept informed of their views. Naming parents as a party when this is not necessary may be worrying and upsetting for them. Where it is proposed that a parent is not served with proceedings, and therefore have no notice of them, consideration should be given to inviting the Attorney General to intervene in respect of the application to dispense with service, since the absent parent will not be in court to argue their case.1 If a parent (or any other party) does not have capacity to conduct the proceedings, the Official Solicitor may be prepared to act as litigation friend to that person.2 In a number of cases parents are unable to fund lawyers privately, and may not have access to public funds via the legal aid agency. In such circumstances, it is not uncommon for parents to be represented on a pro bono basis. A recent example of such a case was Great Ormond Street Hospital for Children NHS Foundation Trust v MBC.3 In that case, declarations were sought that it was lawful and in the best interests of a 19-month-old child who sustained a profound neurological injury at birth for ceilings of care to be imposed; including any form of invasive ventilation, escalation of intensive care support or CPR. Regarding counsel for the parents appearing pro bono, Peel J, at para 22, said this: ‘I cannot forbear from comment that it seems to me to be little short of scandalous that in cases of serious, and often urgent, medical treatment for children, where issues of life and death are frequently considered, parents such as these have little option but to rely upon the goodwill, availability, and dedication of members of the Bar acting for free’. It is sensible for Advocate to be put on notice in complex cases as soon as it is clear that an application will be made in circumstances where parents (or indeed, any other family member/ relevant person) would be assisted by legal representation on a pro bono basis. 1 2

Local Authority v B (Dispensing with Service) [2020] EWHC 2741 Practice Note: The Official Solicitor to the Senior Courts: appointment in Family Proceedings and Proceedings under the Inherent Jurisdiction in relation to Adults 1 March 2013 [2013] Fam Law 744. See Great Ormond Street Hospital for Children NHS Foundation Trust v MK

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3

[2020] EWHC 3476 (Fam) (for example) where the Official Solicitor was appointed to act as litigation friend for the child’s mother. [2021] EWHC 2574 (Fam). There is regular judicial comment to the same effect: see also Great Ormond Street Hospital v Yates [2017] EWHC 972 (Fam).

Local authority 6.78 If a local authority is involved in the minor’s life, consideration should be given to whether and to what extent it should also be involved in the proceedings.

Starting proceedings – non-urgent 6.79 Permission is not required to start proceedings.1 Proceedings are started by the issue of an application form (Form C66) at the request of the applicant2 and should be accompanied by a witness statement setting out a summary of the facts and grounds relied on, attaching relevant documents such as reports or witness statements from treating clinicians. The information required will of course vary case-by-case, but the following points will usually need to be addressed: ●● ●● ●● ●● ●● ●● ●● ●● 1 2

the minor’s current circumstances and the medical issue/s arising; the minor’s background; views of treating clinicians as to competence/capacity and best interests (voluminous medical records should not be included); any past and present wishes and feelings expressed by the minor; views of parents and any other family members; views of any clinicians giving second opinions, or experts who have been consulted so far; summary of attempts to reach agreement and why a court application is necessary; how urgently the case needs to be heard for (1) directions (2) final hearing. Except by a local authority: see above (who does require permission to start proceedings). This is in contrast with most applications in the Court of Protection where an NHS body, will need permission. Rule 5.3 of the Family Procedure Rules 2010. See also Practice Direction 5A (‘Forms’).

6.80 The court will list the matter for a directions hearing if the matter is not urgent; at which time, case management directions will be made, including the listing the application through to a final hearing.

Starting proceedings – urgent 6.81 An urgent oral application may be made at the Royal Courts of Justice before proceedings have been begun and even before the application has been drafted.1 The proposed applicant should take steps to notify potential respondents of the application, unless justice would be defeated if notice were given.2 It is necessary so far as possible for the parents to be in a position to address the application made.3 Applicants should take all reasonable steps to make even urgent applications within court hours.4 An out-of-hours application requires a greater level of 286

Going to Court 6.82 urgency. Urgent applications, especially out of hours, should be avoided by pursuing applications promptly.5 Urgent applications are generally arranged by counsels’ clerks making contact with the Royal Courts of Justice.6 CAFCASS should be contacted, directly during working hours; and by the Royal Courts of Justice security office out of hours. For further guidance, see para 6.52 above, which applies equally in relation to Court of Protection and High Court practice. 1 2 3 4

5 6

See Practice Note (Official Solicitor, CAFCASS and the National Assembly for Wales: Urgent and out of hours cases in the Family Division of the High Court), 28 July 2006 [2006] 2 FLR 354, paras 8–9. See by way of analogy Court of Protection Practice Direction 10B, para 5. Per Parker J in Re OT [2009] EWHC 633 (Fam) at para 85. See Practice Direction 12E (‘Urgent Business’): see bit.ly/HMC-PD12E. Para 4.2 provides that that enquiries about children cases should be directed to the High Court Team Duty Manager at Cafcass National Office, 3rd Floor, 21 Bloomsbury Street, London, WC1B 3HF. DX: Cafcass DX 310101 Bloomsbury 11. Telephone 01753 235273 (Cafcass High Court Team) or 01753 235295 (Cafcass Legal Duty Lawyer). e-mail: [email protected]. uk (office hours only). Enquiries should be marked ‘F.A.O. High Court Team’ or ‘F.A.O. HCT’. Para 4.3 provides that enquiries about children cases in Wales should be directed to the Social Care Team, Legal Services, Welsh Assembly Government, Cathays Park, Cardiff CF10 3NQ, telephone 02920 370888, fax 0872 437 7306. Ibid, para 1.2. During court hours, the office of the Clerk of the Rules – 0207 947 6543; out of hours, the security office – 020 7947 6000/020 7947 6260.

Privacy and publicity 6.82 For proceedings under the Inherent Jurisdiction of the High Court relating to minors, a summary is as follows: ●●

●●

●●

●● ●●

Proceedings will be in the Family Division, and as such, r 27.10 of the Family Procedure Rules 2010 provides that the proceedings should be heard in private unless the court directs otherwise, or another enactment directs otherwise. Rule 27.11 of the Family Procedure Rules 2010 allows duly accredited representatives of news gathering and reporting organisations to attend such hearings, save in certain circumstances where the court may direct that such representatives shall not attend (r 27.11(3)). There is a requirement to take all practicable steps to notify the national media (via the Press Association) of any application for a reporting restrictions order, or to satisfy the court that there are compelling reasons why the press should not be notified. The court retains the power to make without notice orders, but such cases will be exceptional, and an order will always give persons affected liberty to apply to vary or discharge it at short notice.1 Since October 2018, a pilot scheme under Practice Direction 36J extends r 27.11 to allow duly authorised lawyers attending for journalistic, research or public legal educational purposes to attend such hearings. The right to attend hearings does not, however, grant the right to report on proceedings or publish details of proceedings. Pursuant to s 12(1)(a)(i) of the Administration of Justice Act 1960, publication of information relating to such private proceedings would amount to contempt of court. 287

6.82  Going to Court ●● ●●

●●

●●

●● ●●

1

2 3 4 5

The court can authorise such publication with restrictions (for example, prohibiting the identification of an individual) as necessary. In relation to a public hearing, the court can restrict the publication of information. There is a Practice Direction governing applications for Reporting Restrictions Orders in family court proceedings which needs to be considered for any such application.2 Orders can only be made in the High Court and are normally dealt with by a judge of the Family Division Given the importance of transparency in the family courts and the level of public interest in medical treatment cases concerning children, the court may consider that the case should be heard in open court, subject to an appropriate reporting restriction order, and parties should be prepared to respond to this, if raised. This was the position adopted by Lieven J (for example) in Manchester University NHS Foundation Trust v Namiq.3 On 3 October 2019, Sir Andrew McFarlane, President of the Family Division, provided guidance as to reporting in the Family Courts,4 which makes clear that an application to lift or extend the statutory reporting restrictions may lead to the making of a reporting restriction order, and the guidance sets out the matters which the court would need to take into account – principally, the balance between ECHR Arts 6, 8 and 10 (or, where applicable, other rights). A template model reporting restrictions order can be found at Appendix 2. Following the move towards transparency in the family courts, the expectation in a serious medical treatment case involving a child (whether under the Children Act 1989 or the High Court’s inherent jurisdiction) will be that the judgment will be published in anonymised form.5 In this guidance at para 17 it is stated that in any application for an order involving the giving or withholding of serious medical treatment the starting point is that permission should be given for the judgment to be published unless there are compelling reasons why the judgment should not be published. Any application for a reporting restriction must be made on notification to those affected by it (i.e. the media). Details of how to do so are available from ‘Media Lawyer’ which is the PA service that may be used to notify the subscribing media organisations of the intention to apply to the Court for an injunction which will affect their rights under Article 10 by prohibiting or restricting reporting. See https://medialawyer.press.net/courtapplications/practicenote.jsp. Practice Direction 12I – Applications for Reporting Restrictions Orders: see bit.ly/HMCPD12I. [2020] EWHC 181 (Fam). See bit.ly/Pres-Guid-Oct-19. See the Practice Guidance on transparency and the publication of judgments issued on 16 January 2014 by the President of the Family Division. See bit.ly/CoP-Transparency16-Jan-14.

First hearing and subsequent directions hearings 6.83 The following is a checklist of matters which should be considered and reflected in the order where appropriate: ●●

Privacy and publicity: Is this (and are future hearings) in private or public? Does publication of information need to be authorised or restricted? Should proceedings be anonymised in any event? 288

Going to Court 6.84 ●● ●● ●● ●● ●● ●● ●● ●● ●● ●● ●● ●● ●● ●● ●● ●● 1

2

3 4 5

Should the minor be made a party? Does a guardian ad litem need to be appointed for the minor? Parties: Are the appropriate parties involved? Involvement of others: Does the involvement of other people (for example, family members who do not wish to be parties) need to be facilitated? Documents: Should anybody, whether a party or not, be required to provide documents, to whom, and by when?1 Factual evidence. Expert evidence. Interviewing the minor and accessing records.2 Guardian’s analysis.3 Any meeting between the parties and their lawyers to attempt to resolve issues. Further interim hearing/s to deal with further directions or preliminary issues. Final hearing. Housekeeping before subsequent hearings.4 Interim declarations. Costs. Liberty to apply.5 In medical treatment cases the practice is to specify what category of documents should be provided by and to whom. It is likely to help all concerned if records are ordered to be provided in paginated form from the outset. If there is concern that some documents should be withheld from someone, provision can be made for all the documents to be supplied to the guardian in the first instance. The guardian can then take a view about further disclosure is in the minor’s best interests; and any dispute can be raised before the court if necessary. In cases where time is of the essence, parties may seek a direction that records be sent directly to experts. Any order against someone who is not present or represented at the hearing and who has not consented to do what is proposed should be subject to liberty to apply. Parties sometimes seek a direction that any experts referred to in the order may examine/ interview the minor and access the minor’s records etc. This may not be strictly necessary but is sometimes helpful so that the expert can demonstrate to others (for example, the holders of records) that they can lawfully access them. The guardian generally provides a position statement or analysis once all the other evidence is available. For example, preparation, service and filing of the bundle and position statements/skeleton arguments, authority bundles and a chronology and legal framework (which should be agreed between the parties if at all possible). Note that the phrase ‘liberty to apply’ should not be used without explanation when it may be relevant to people who are unlikely to know what it means: LLBC v TG [2007] EWHC 2640 (Fam) per McFarlane J at para 56.

What to expect at a final hearing 6.84 The court will usually ask the applicant to introduce the parties and attend to housekeeping matters, including whether a reporting restrictions order is necessary. If the minor has indicated a wish to speak with the judge prior to the commencement of the hearing, this will usually be facilitated by the court. The court should be notified of this prior to the commencement of the final hearing – usually by emailing the clerk to the judge hearing the application (with an explanation of what is proposed). It is common for the part of the hearing where the minor provides their evidence to be in private with only the judge, the minor’s representatives present, even if the hearing is in public subject to an RRO. The judge will usually thereafter provide a precis 289

6.84  Going to Court of what was said by the minor to the other parties in open court who were not present. The applicant will usually then be asked to provide a short opening (generally based on a written position statement that has already been filed prior to the hearing). The applicant will then call its witnesses who will be questioned by the other parties and the judge (as appropriate). Sometimes clinicians or experts ‘hot tub’ by providing their evidence together if there is a particular issue which they can speak to, and which may assist the court to have a more ‘conversive’ approach to the evidence. This should be raised as a preliminary issue by the parties if this is considered an appropriate approach. Following the applicant’s evidence, the respondent’s evidence will follow. Whether family members are parties or not, the court is keen to hear from them and often a degree of informality is adopted to ensure that they feel comfortable in providing their views to the court. Following the conclusion of the evidence, the applicant will provide its closing submissions, followed by the other parties and the child (whether through their guardian, or their solicitor if they are able to instruct one) will ordinarily go last. Due to the urgency of many medical cases, an ex tempore judgment will often be given by the court, but if that is not possible, and time allows (as regards the medical issues before the court) judgment will be reserved, with a return date as soon as practicable. Sometimes, if the treatment is urgent, but the court wishes to provide a written judgment, it will confirm what order it intends to make with short reasons, with a detailed judgment to follow. 6.85 ●● ●● ●● ●●

Matters to consider including in a final order are: Does publication of information need to be authorised or restricted? Final declarations and orders. Costs order. Is a liberty to apply appropriate? If not, should a direction be made that any subsequent application involving the same minor (if made) is reserved to the judge who has heard the extant application to ensure judicial continuity?

Costs 6.86 Costs are in the discretion of the court but there is no general rule that costs follow the event.1 Costs are frequently not sought. The usual order is ‘no order as to costs’ or ‘no order as to costs, save for a detailed assessment of the costs of those parties in receipt of public funding’. However, see A Local Authority v Mother2 for an unusual case where costs were ordered against a non-party (an intermediary) whose conduct had caused the adjournment of a final hearing. 1

2

See r 28.1 of the Family Procedure Rules 2010 (‘The court may at any time make such order as to costs as it thinks just’) and Practice Direction 28A, applying CPR Pts 44 (except rr 44.2(2) and (3) and 44.10(2) and (3)), 46 and 47 and r 45.8. Note modifications to the CPR include the disapplication of CPR r 44.2(2) (costs follow the event). See para 6.60 above for the principles which may be relevant. [2021] EWHC 2794 (Fam).

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Going to Court 6.89

Appeals 6.87 An appeal (for which leave must be sought) lies to the Court of Appeal.1 1

In accordance with s 16 of the Senior Courts Act 1981.

G  THE HIGH COURT’S INHERENT JURISDICTION IN RELATION TO ‘VULNERABLE ADULTS’1 6.88 As a matter of practice, such applications should be made to the Family Division. The Civil Procedure Rules apply2 and usually a Pt 8 claim form should be used.3 Parties should give consideration to whether the hearing should be in private and whether there should be an order prohibiting the disclosure of the identity of a party or witness.4 1

See Re SA (Vulnerable Adult with Capacity: Marriage) [2006] 1 FLR 867 per Munby J and Chapter 3: Deciding for Others – Adults at paras 3.42–3.44. 2 These proceedings are not, by virtue of s 32 of the Matrimonial and Family Proceedings Act 1984, and the Senior Courts Act 1981, Sch 1 ‘family business’ and therefore (see s 75(3) of the Courts Act 2003) not ‘family proceedings’. Hence CPR, r 2.1(2), disapplying the CPR to family proceedings, does not apply. 3 The Pt 8 procedure will be appropriate where there are no substantial disputes of fact: CPR, r 8.1(2)(a). 4 See CPR, r 39.2.

H  CONCLUSION 6.89 Whether in the High Court or the Court of Protection, judges considering medical treatment cases have as their focus the best interests of the person who is the subject of the proceedings.1 While the procedural rules must of course be observed, the need to achieve the right result for that person requires an emphasis on substance over form. Translating parties’ proposals for case-management into workable directions often requires considerable thought and imagination. Resourcefulness is also required in order to capitalise on any possibility of reaching agreement on the substantive issues. But if agreement cannot be reached, differences of opinion as to the desired outcome should not stand in the way of as much co-operation as possible in working out how best to investigate and ventilate the issues in the case. 1

In ‘vulnerable adult’ cases, the court’s focus may be towards protecting the interests and facilitating the choices of the vulnerable but capable adult.

For updating material and hyperlinks related to this chapter, see www. serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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Chapter 7

Access to Healthcare – Choice

A Introduction  7.1 B General principles  7.2 Private medical treatment  7.2 Clinical alternatives  7.3 Second opinions  7.4 The clinician’s veto  7.5 Consideration of resources available to other patients  7.7 Organ donation and transplant 7.8 C The NHS Constitution  7.9 D NHS primary care  7.10 The right to choose a GP practice  7.10 The right to express a preference for a particular GP  7.11 Face-to-face consultations  7.12 E Referral to NHS secondary care  7.13 Eligibility  7.13 Choice as to nature of secondary care subsequently provided  7.15 Choices by the CCG  7.16 The personal health budget  7.17 F The Human Rights Act 1998  7.20 Article 8  7.21 Article 3  7.23 Article 2  7.26 Article 14  7.28 G Discrimination  7.29 Discrimination in the provision of services  7.30 Direct and indirect discrimination  7.31 Reasonable adjustments for disability  7.34 A clinician’s personal beliefs  7.35 The Public Sector Equality Duty  7.36 H Conclusion  7.37

A INTRODUCTION 7.1 A patient’s opportunity to choose which treatment they undergo, or where, or by whom such treatment is given, or even to decline treatment, is at the heart of lawful and ethical medical care. Nevertheless, there are limitations 293

7.1  Access to Healthcare – Choice on this choice. The extent to which this choice is even the patient’s choice at all was raised by Lord Phillips MR in Burke: ‘The relationship between doctor and patient usually begins with diagnosis and advice. The doctor will describe the treatment that he recommends or, if there are a number of alternative treatments that he would be prepared to administer in the interests of the patient, the choices available, their implications and his recommended option. In such circumstances the right to refuse a proposed treatment gives the patient what appears to be a positive option to choose an alternative. In truth the right to choose is no more than a reflection of the fact that it is the doctor’s duty to provide a treatment that he considers to be in the interests of the patient and that the patient is prepared to accept.’1 This chapter examines those areas of healthcare provision that impact on a patient’s choice as to their medical treatment. In doing so, it touches on a number of areas covered by other chapters, particularly those of consent2 and funding decisions.3 There is a very significant difference between the choices available to a patient who is able to fund their own healthcare, and those where the care is provided by the NHS. It is necessary therefore to consider the private healthcare position – and some other matters of general application – at the outset. The chapter then looks at the factors impacting on a patient’s choice of treatment by the NHS as they move through the pathway from primary to secondary care, before considering the impact of equality and human rights legislation on access to healthcare. 1

R (Burke) v General Medical Council [2005] EWCA Civ 1003, [2006] QB 273 at para 51 (emphasis added). 2 See Chapters 1 and 2. 3 See Chapter 8: Access to Healthcare – Funding.

B  GENERAL PRINCIPLES Private medical treatment 7.2 For a patient who is able to fund their own healthcare, there are no formal restrictions on whom that patient may consult, either for primary or secondary care. The BMA advises that specialists should make it clear to members of the public that they usually do not accept patients without a referral from a GP or other practitioner,1 but this is no more than guidance as to good practice; the BMA are particularly keen to ensure that each patient has a single doctor who has a complete record of the individual’s healthcare. In these circumstances, while a private clinician may choose which patients they see, any decision to refuse to see, or treat, an individual patient must not amount either to unlawful discrimination2 or a breach of that doctor’s professional obligation. The GMC is very clear in its guidance that doctors must treat all patients fairly and with respect, whatever their life choices and beliefs.3 There is an explicit professional obligation on a doctor who has a conscientious objection to a particular procedure to explain this to the patient, tell them about their right to see another doctor and make sure they have enough information to exercise that right.4 In providing this information they must not imply or express any disapproval of the patient’s lifestyle, choices or beliefs.5 294

Access to Healthcare – Choice 7.3 A complaint that a doctor has failed to follow these professional obligations has the potential to lead to formal regulatory action. 1 2 3 4 5

See British Medical Association, Setting up in private practice – overview (updated July 2021): see bit.ly/BMA-Private. See below at para 7.29ff. General Medical Council’s Good Medical Practice (2013) at para 48: see bit.ly/ GMC-GMP-2013. Ibid, para 52. See also General Medical Council, Personal Beliefs and Medical Practice (2013): see bit.ly/ GMC-Pers-Beliefs.

Clinical alternatives 7.3 In order for a patient to give informed consent, it is essential that they have been advised of the available options for treating or managing the condition, including the option of no treatment.1 Available options may be understood as relating either to those clinical options available for a patient’s individual presentation, or more broadly in the sense of those options offered by the particular clinician/unit/hospital/NHS Trust. It may be that a doctor is aware that there may be a treatment option available to a patient that they or their organisation are unable to offer. Where a patient might be able to benefit from a treatment that cannot be offered by the advising clinician, the clinician is under a specific obligation to consider whether they have a duty to inform the patient of the potential to go elsewhere. This is made clear in the GMC’s document, ‘Decision Making and Consent’: ‘Other examples of information that might be relevant and, if so, should be shared with patients include: … their right to seek a second opinion … any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer.’2 Whether or not there is such an obligation will depend on the particular facts of the case, but there may be circumstances in which a failure to draw such alternatives to the patient’s attention would mean the clinician had failed to obtain informed consent.3 1

2 3

See Chapter 1: Consent – General, especially para 1.5ff. Note Montgomery v Lanarkshire Health Board [2015] UKSC 11 and in particular at para 87 by Lord Kerr and Lord Reed: ‘The doctor is therefore under a duty to take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative or variant treatments. The test of materiality is whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it.’ (added emphasis). General Medical Council, Decision Making and Consent (2020) at para 13. See Montgomery (n1, above). Lauren Sutherland QC in Montgomery: myths, misconceptions and misunderstanding (2019) JPI Law 3, 157–167, cited the Canadian case of Seney v Crooks (1998) 166 DLR (4th) 337 (Alta CA) in support of the contention that the scope of the duty ‘did not require the doctor to advise of fringe alternatives or alternative medicine practices.’ She added – correctly – that: ‘However, the fact that a doctor simply preferred one treatment over another did not relieve them of the obligation to advise of other acceptable and known procedures. It was also provided that reasonable alternatives may also include procedures which other physicians may recommend but the treating doctor may not … The Canadian courts have also endorsed the view that a patient should be informed of a known treatment which other doctors, in the same specialty, consider to be superior, even if the doctor does not agree with that view.’ For an example of these Montgomery principles in action in the UK setting see the advice of Christopher Johnston QC about liability in negligence for a failure to advise expectant mothers about the availability of alternative treatment for screening for Group

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7.3  Access to Healthcare – Choice B Streptococcus in Group B Streptococcus Support, Preventing Group B Strep infections in babies: failure to turn national recommendations into local guidelines (December 2020): bit.ly/GBSS-Testing.

Second opinions 7.4 The GMC’s document, Good Medical Practice refers only to the obligation to ‘respect’ a patient’s right to a second opinion.1 However, the extract above from Decision Making and Consent appears to advise that there will be situations where a doctor should tell a patient of their right to seek a second opinion. Given ‘Decision Making and Consent’ is expressly referred to in ‘Good Medical Practice’, there should be no conflict between them. The question then arises in what circumstances might a clinician be obliged to draw a patient’s attention to their right to seek a second opinion? This question was posed, but not fully answered by the Court of Appeal, in R (Tracey) v Cambridge University Hospitals NHS Foundation Trust2 which concerned the use of a ‘do not resuscitate notice’ placed in a patient’s notes without prior consultation either with the patient or their family. One of the grounds of challenge brought on behalf of the patient was the failure by the Trust to offer a second opinion before deciding to place the notice in the notes. It was submitted on behalf of the claimant that the possibility of a second opinion might have been raised if Mrs Tracey had been consulted and if there had been disagreement as to whether a DNACPR decision should be made. The view of Lord Dyson MR was that the possibility was not sufficient for the issue to arise on the facts of that case. However, he went on to consider the matter in order to address an argument in relation to the patient’s Art 8 rights.3 In doing so, Lord Dyson considered two previous cases which appear to lend some weight to the argument that, where a clinician and a patient disagree, a second opinion should be offered. The first was the case of Re B (Adult: Refusal of Medical Treatment), in which it was stated at first instance that – where there was no debate about a patient’s capacity to consent to treatment – if ‘the doctors are for any reason unable to carry out the wishes of the patient, their duty is to find other doctors who will do so.’4 The second was the case of Burke in which Lord Phillips MR had observed that ‘if the doctor concludes that this treatment is not clinically indicated he is not required (i.e. he is under no legal obligation) to provide it to the patient although he should offer to arrange a second opinion.’5 Lord Dyson noted that the dicta in Burke was obiter, before observing that: ‘Without the benefit of full argument on the point, I would be reluctant to hold that a doctor is under a legal obligation to offer to arrange a second opinion in all circumstances.’ Lord Dyson found that ECHR Art 8 did not raise a formal requirement that a second opinion be sought in all circumstances of disagreement between clinician and patient. Lord Dyson’s fellow judges gave short concurring judgments. Longmore LJ stated that he did not consider a doctor’s common law obligations in this context to differ from those under Art 8. The logical consequence would be that he was of the view that there was not a duty that arose in all circumstances 296

Access to Healthcare – Choice 7.5 to arrange for a second opinion either at common law or under Art 8, although this is not made explicit in his judgment. Ryder LJ confirmed the applicability of the Burke dicta, while focussing on the need to include the patient in these types of discussions at the earliest stages of the clinical relationship, so that decisions can be reviewed as circumstances change. It is of significance that, despite it being a specific ground of appeal, none of the judges in the Court of Appeal in Tracey felt able to confirm that there is a right to a second opinion in all cases of disagreement. On the issue of referral for a second opinion the NHS website states: ‘Your GP will only refer you to a specialist if they believe that specialist assessment or treatment is necessary. If they do not think it is, they do not have to refer you – either privately or on the NHS. ‘If you disagree with your GP’s decision, you can ask them to refer you to another healthcare professional for a second opinion (an opinion about your health from a different doctor). ‘Although you do not have a legal right to a second opinion, a healthcare professional will rarely refuse to refer you for one.’6 1 2 3 4 5 6

General Medical Council’s Good Medical Practice (2013) at para 16 (e): see bit.ly/GMCGMP-2013. [2014] EWCA Civ 822, [2015] QB 543. Ibid, para 60. [2002] 2 All ER 449 at para 100(viii). [2005] EWCA Civ 1003, [2006] QB 273 at para 50. NHS website, Do I need a GP referral for private treatment?: see bit.ly/NHS-GP-ToPrivate.

The clinician’s veto 7.5 As set out above, the Court in Re B (Adult: Refusal of Medical Treatment) included within its guidelines that, where a patient with capacity was clearly requesting life-preserving treatment, if a doctor felt unable to provide the treatment, he was under an obligation to find a doctor who would do so.1 Ultimately however, a doctor cannot be compelled to provide treatment that they regard as unethical. This principle has been expressly recognised by the Court of Appeal in Re J (A minor) (Child in care: medical treatment).2 In Re J at first instance, Waite J had made an interim order requiring that a health authority ‘do provide … intensive therapeutic measures, including artificial ventilation’ to an 11-month-old child with limited life expectancy and microcephaly, cerebral palsy, cortical blindness and severe epilepsy, despite the view of the treating team that this treatment was medically inappropriate. On an appeal by the Trust, Lord Donaldson MR defined the question as whether the court should ever force a medical practitioner to adopt a course of treatment, which the practitioner considered contra-indicated as not being in the best interests of the patient. His answer was: ‘I have to say that I cannot at present conceive of any circumstances in which this would be other than an abuse of power as directly or indirectly requiring the practitioner to act contrary to the fundamental duty which he owes to his patient. This … is to treat the patient in accordance with his own best clinical judgment, notwithstanding that other practitioners who are not called upon to treat the patient may have formed a quite different 297

7.5  Access to Healthcare – Choice judgment or that the court, acting on expert evidence, may disagree with him’.3 1

[2002] 2 All ER 449. See also the judgment of Hedley J in Portsmouth NHS Trust v W [2005] EWHC 2293 (Fam), [2005] 4 All ER 1325 at para 36: ‘where a clinician concludes that a requested treatment is inimical to the interests of the patient, and that his professional conscience, intuition or hunch, confirms that view … he may refuse to act and cannot be compelled to do so, though he should not prevent another from so acting, should that clinician feel able so to do.’ This does not oblige a clinician/NHS Trust to facilitate treatment by a third party where neither the clinician, nor ultimately the court, are of the view that to receive such treatment would be in the best interests of the patient – see In re Gard (A Child) (Child on Life Support: Withdrawal of Treatment) [2017] EWCA Civ 410; [2018] 4 WLR 5, and Chapter 4: Consent & Deciding For Others – Children at para 4.26. 2 [1993] Fam 15. 3 [1993] Fam 15 at 27B. Re J was considered in detail, with approval, by the Supreme Court in Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, [2014] AC 591 at paras 37–39 (and see Chapter 3: Deciding for Others – Children at paras 3.14 and 3.16).

7.6 Nevertheless, an important counterpoint to Re J is the case of Re P.1 This involved an adult patient who lacked capacity and whose treating doctors were of the view that the treatment was overly burdensome. However, the application for a declaration that it would be lawful to discontinue lifemaintaining treatment was refused, because the court determined on the available evidence that it was in the patient’s best interests for the treatment to be continued. P was an adult who had suffered a cardiac arrest, causing a prolonged period of hypoxia. Clinicians were originally of the view that he was in a persistent vegetative state, but P’s family disagreed with this diagnosis, and eventually he was diagnosed as being in a minimally conscious state. P had strongly held religious views and had previously expressed opinions suggesting that he would not regard the life of a chronically disabled person as being of less value. A further consideration was that the treatment was not found to be futile, in that it would continue to be effective in maintaining the patient’s life, in which he did not present as being in pain or discomfort. The difference of views between the treating doctors and the patient’s family was predominantly related to the potential for some further recovery and the weight to be attached to P’s own previously expressed values and beliefs, particularly as to the quality of life that he would have regarded himself as having. Significantly, on the available evidence (about which the court was somewhat critical), the court felt unable to decide that it could exclude the prospect of some further recovery. Moreover, the court concluded that it ‘could not possibly be satisfied that P experiences such a degree of pain that might justify non-continuance of essential life-prolonging treatment.’2 Applications to the court for declarations brought by NHS Trusts seeking to discontinue life-preserving treatment are not always successful; in such cases, clinicians have effectively confirmed to the court that they will comply with the court’s definitive judgment as to best interests, and not subsequently refuse to provide the very treatment to the patient that they had been seeking to withdraw.3 In contrast, where treating clinicians have made a decision that they will not provide a certain treatment, it is not available to the court to decide it is in P’s best interests. 1 2

[2015] EWCOP 42, [2015] Med LR 463. Ibid, para 36.

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Access to Healthcare – Choice 7.7 3

The view has been expressed that in Re P the Court contravened the principle of the clinician’s veto, and that the court’s language may need revisiting to bring out the distinction between the doctors’ view on best interests and what is ethically or medically wrong. See Youngs, Can the courts force the doctor’s hand? (2016) Med L Rev 24(1), 99–111 and Powell, Dilemmas in the medical treatment of patients facing inevitable death (2007) Arch Dis Child Sep; 92(9): 746–749 (see www.ncbi.nlm.nih.gov/pmc/articles/PMC2084035). Pure clinical judgments may be challenged in a private law case but are usually not amenable to judicial review: R (Brooks) v Secretary of State for Justice and Isle of Wight PCT [2008] EWHC 3041 (Admin); R (A) v Partnerships in Care [2002] EWHC 529 (Admin); [2002] 1 WLR 2610 at para 24.

Consideration of resources available to other patients 7.7 In the case of Re J, the Court of Appeal found the order made at first instance to be unlawful for a second reason: ‘… only slightly less fundamental … [that it] does not adequately take account of the sad fact of life that health authorities may on occasion find that they have too few resources, either human or material or both, to treat all the patients whom they would like to treat in the way in which they would like to treat them. It is then their duty to make choices.’1 For consideration of these resources issues, see Chapter 8: Access to Healthcare– Funding. In the first half of 2020 the UK was faced with the very real possibility that a shortage of ventilators might lead to clinicians making decisions about who would receive life-preserving (and potentially lifesaving) treatment, and who would not, in circumstances where it could not be said that efforts would be futile, only that they would be more likely to succeed for another patient. The ventilator crisis passed without the courts being required to rule on a legal challenge either to clinical guidelines as to priority for ventilator treatment,1 or a decision to withdraw ventilator support. Barry Lyons has provided an interesting legal – and ethical – perspective about resource allocation during a national emergency, noting: ‘… prioritisation is unavoidable in the distribution of scarce resources in a pandemic … However, both the nature and the content of the decisional process has given rise to much moral discomfort amongst clinicians, academics and the public. Ideal moral theories suggest that ethical dilemmas can be soundly resolved by identifying and logically focusing on one or other of consequences, duties, principles or virtues. This approach assumes that the right answer can always be found, leaving those involved confident they have done the right thing. However … ideal models are wholly inadequate in disaster settings. Instead, non-ideal moral theory may be more relevant as they recognise pandemic moral dilemmas as situations where every option involves some element of unavoidable transgression, and that sometimes the lesser of two evils is the best that can be done. Whereas ideal moral theories focus on abstract principles, non-ideal approaches describe the real world, including its wrongs and injustices … It has been suggested that one way of developing the fairest guidelines would be by having communities conduct deliberative procedures for deciding how resources might be allocated. Certainly data indicates that the perspectives of lay-people and some professionals are partly at odds with some solutions proposed by ethicists. A question then for policymakers is whether or not to give ethicists, health professionals, and the general public an equal voice when attempting to arrive at maximally endorsed allocations of scarce medical resources. 299

7.7  Access to Healthcare – Choice However, universal agreement seems improbable as there are likely to be differences that are deeply rooted in cultural views and traditions.’3 1 2

3

Discussed above at para 7.5; [1993] Fam 15 at 28A. See (1) White & Lo, A Framework for Rationing Ventilators and Critical Care Beds During the COVID-19 Pandemic (2020) JAMA 323(18):1773–1774, doi:10.1001/jama.2020.5046, (2) Marron et al, Ethics and Resource Scarcity: ASCO Recommendations for the Oncology Community During the COVID-19 Pandemic (2020) J Clin Oncol Jul 1;38(19):2201-2205, doi: 10.1200/JCO.20.00960 and (3) Krishnamoorthy et al, Acute Care Resource Use After Elective Surgery in the United States: Implications During the COVID-19 Pandemic (2021) Am J Crit Care Jul 1;30(4):320-324, doi: 10.4037/ajcc2021818. (4) For threatened judicial review on grounds of disability discrimination, see below at para 7.33. Lyons, COVID-19 and critical care resource allocation (2020) Medico-Legal Journal of Ireland 26(2), 68–75 at 75.

Organ donation and transplant 7.8 The courts have had to address the issue of competition for limited resources in the context of organ donation and transplant. The case of BA1 concerned the priority afforded to those normally resident in the UK over those in the country illegally, in relation to organ transplant. The case was brought by a patient who had entered the UK illegally in 2003 or 2004 and was classified as an illegal immigrant at the time of his judicial review at first instance. By the time of the appeal, he had been granted limited leave to remain, thus the appeal was academic. However, the Court of Appeal agreed to determine the appeal due to the issue of public interest that it raised. The court addressed the Secretary of State for Health’s overriding duty under s 1(1) of the 1977 Act and s 1(1) of the 2006 Act to promote a comprehensive health service. It was argued that the policy of prioritising for suitable kidney transplantation those normally in the UK over illegal immigrants was ultra vires, and that the Secretary of State could not lawfully discharge his functions under the 2006 Act by prioritising one group of persons over another on the basis of anything other than clinical need.2 The Court of Appeal considered in detail the earlier decision of Coughlan,3 which was a challenge to a health authority’s decision to close an NHS facility for the long-term disabled because the applicant and other residents did not need specialist nursing services but only general nursing care. The Court of Appeal in Coughlan noted the obligation on the Secretary of State to provide a comprehensive health service.4 However, it went on to state that, as long as he pays due regard to that duty, the fact that the service will not be comprehensive does not mean that he is necessarily contravening his statutory obligation: ‘The truth is that, while he has the duty to continue to promote a comprehensive free health service and he must never, in making a decision under section [1], disregard that duty, a comprehensive health service may never, for human, financial and other resource reasons, be achievable. … In exercising his judgment the Secretary of State is entitled to take into account the resources available to him and the demands on those resources.’5 Having confirmed the Secretary of State’s entitlement to have regard to competing demands on a limited resource, the Court of Appeal in BA stated that scarcity of resources was a major consideration for the Secretary of State. Organs for transplantation are in short supply and there are not enough donated organs for all the people who need them in the UK. It endorsed the findings of 300

Access to Healthcare – Choice 7.9 a report that donor expectations are critical in view of the shortage of organs and those expectations are that priority will be given to fellow citizens or at least those ordinarily resident in this country. It was therefore within the discretion of the Secretary of State to have lawfully limited the services under s 3(1) to such extent as was considered necessary, even if that meant limiting the services to one particular category of persons in need. The Court of Appeal went on to consider that, had rationality been a ground of challenge, ‘… it would have been sufficient for the Secretary of State to point to any one or more possible grounds for a rational decision to prioritise those ordinarily resident over those not ordinarily resident for the purposes of the allocation of organs for transplantation.’6 The Court of Appeal’s endorsement of the judgments the Secretary of State is required to make with limited resources is a key element underpinning funding decisions. There are situations in which it will be rational, and lawful, for decisions to be taken by the Secretary of State, individual clinical commissioning groups (CCGs) and potentially clinicians, declining to provide a patient with treatment on the basis that limited resources must be rationed.7 1 2 3 4 5 6 7

R (on the application of BA) v The Secretary of State for Health and Social Care [2018] EWCA Civ 2696. Ibid, para 65. R (Coughlan) v North and East Devon Health Authority [2001] QB 213. Now enshrined in s 1 of the National Health Service Act 2006. Coughlan (n3 above), paras 25–26. BA (n1 above), para 72. See further Chapter 8: Access to Healthcare – Funding.

C  THE NHS CONSTITUTION 7.9 The NHS Constitution was published in January 2009 and was introduced into legislation later that year by the Health Act 2009.1 The arrangements for funding NHS services are considered in Chapter 8: Access to Healthcare – Funding. Most NHS bodies are under a statutory duty in relation to the NHS Constitution. In the case of the Secretary of State this is a duty to have ‘regard to’ the NHS Constitution.2 For NHS England and CCGs, it is a duty to ‘act with a view to securing that health services are provided in a way which promotes the NHS Constitution.’3 The NHS Constitution for England is a simple straightforward 15-page document which provides accessible statements about different aspects of NHS treatment.4 The NHS Constitution is – perhaps inevitably – accompanied by a rather longer, 74-page ‘explanatory’ document, the Handbook to the NHS Constitution,5 which does provide further information about the sources of the rights identified in the Constitution. It is necessary to note from the outset that the NHS Constitution states: ‘You have the right to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you. You have the right to expect local decisions on funding of other drugs and treatments to be made rationally following a proper consideration of the evidence.’6 301

7.9  Access to Healthcare – Choice Thus, the Constitution does not guarantee a patient’s right to choose the treatment they are offered or to be offered the most appropriate, effective (or modern) treatment for their condition. There is also no underlying obligation on the NHS to offer such a choice. Nevertheless, in relation to patient choice, there are a number of clear statements: ●● ●● ●●

‘You have the right to choose your GP practice, and to be accepted by that practice unless there are reasonable grounds to refuse, in which case you will be informed of those reasons.’ ‘You have the right to express a preference for using a particular doctor within your GP practice, and for the practice to try to comply.’ ‘You have the right to make choices about the services commissioned by NHS bodies and to information to support these choices. The options available to you will develop over time and depend on your individual needs.’7

These matters are addressed below. 1 2 3 4 5 6 7

See s 1(2). NHSA 2006 s 1B. NHSA 2006 ss 13C and 14P. Current version 1 September 2021: NHS Constitution for England, see bit.ly/NHS-ConstDoc. See DHSC, Handbook to the NHS Constitution for England, see bit.ly/NHS-Const-Supp. See n4, above. See n4, above.

D  NHS PRIMARY CARE The right to choose a GP practice 7.10 Where a GP practice has not closed its list,1 it may accept an application by a person for inclusion on its list, whether or not that person is resident in the contractor’s practice area or is included (at the time of the application) in the list of patients of another contractor or provider of primary medical services.2 Such an application may only be refused on reasonable grounds,3 which include that the patient does not live in the area specifically covered by the practice. A reason for refusal must not relate to the applicant’s age, appearance, disability or medical condition, gender or gender reassignment, marriage or civil partnership, pregnancy or maternity, race, religion or belief, sexual orientation or social class. It is important to note that these forbidden reasons for refusal include criteria that are not protected by the Equality Act 2010, such as appearance and social class. Moreover, a patient has a right to have themselves removed from the list of a GP practice of which they are currently a member: no reason is required.4 By contrast, the GP practice has to request that a patient be removed from its list, and can only do so on reasonable grounds that must not relate to the same criteria as set out above5, but which include that there has been an irrevocable breakdown in the relationship between the patient and the GP practice. There are further restrictions on the GP practice removing current patients, such as a requirement (with some exceptions) to warn the patient they may be removed.6

302

Access to Healthcare – Choice 7.12 The overall effect of these provisions is that a person may exercise significant choice over which GP Practice they choose to join, particularly if they live in that GP Practice’s area. 1

2 3 4 5 6

If a practice has closed its list, it may only accept applications for inclusion by immediate family members of an existing patient at the practice – see para 18(2) of Sch 3 to the National Health Service (General Medical Services Contracts) Regulations 2015 (SI 2015/1862) (‘the GMS Regulations’). GMS Regulations Sch 3 para 18(1) (n1 above). Ibid, para 21(1). Ibid, para 23. Ibid, para 24. Ibid, para 24(3).

The right to express a preference for a particular GP 7.11 Once a person’s application to join a GP practice has been accepted, reg 22(1) of the GMS Regulations provides that the GP practice must give written notice to the patient of their ‘right to express a preference to receive services from a particular performer or class of performer either generally or in relation to any particular condition.’ Upon receiving such a preference (which the practice must record in writing), it must endeavour to comply with any ‘reasonable preference’, but need not do so if the preferred performer has ‘reasonable grounds’ for refusal, or they do not routinely perform the service in question within that practice. This right is couched in terms of reasonableness on both sides. It is plainly envisaged that it will, for example, enable a patient to request a preference to see a clinician of the same sex in relation to matters of sexual health or reproduction. While it would be a reasonable request for a patient whose first language is not English to express a preference to receive services from a GP who spoke the same language, it would not be regarded as a ‘reasonable preference’ for a patient to specify that they only wished to be seen by a doctor of a particular ethnicity or religion, and the GP practice would have reasonable grounds to refuse such a request.

Face-to-face consultations 7.12 The issue of face-to-face consultations with a patient’s GP became a significant issue during the gradual recovery of primary care services after the lockdowns and restrictions on primary care services imposed during the coronavirus pandemic. The Department of Health made clear its aim to address the issue of ongoing ‘inappropriately low’ rates of face-to-face consultations in some GP practices.1 Regulation 17 of the GMS Regulations sets out the essential services that a GP practice is to provide. These include: ‘… services required for the management of a contractor’s registered patients and temporary residents who are, or believe themselves to be— (a) (b) (c)

ill, with conditions from which recovery is generally expected; terminally ill; or suffering from chronic disease,

303

7.12  Access to Healthcare – Choice which are delivered in the manner determined by the contractor’s practice in discussion with the patient.’ While this requires the GP practice to have a discussion with the patient, the manner in which the services are delivered is determined by the contractor (the GP practice). Nowhere in the NHS Constitution, primary legislation, nor the applicable secondary legislation, is it stated that a GP cannot elect to conduct any particular consultation with a patient remotely. Pending any change in the legislation, the patient does not prima facie have a right to demand such a consultation, nor does a CCG necessarily have a power to require that a minimum percentage of consultations are face-to-face.2 It remains a matter for the GP’s clinical judgment in relation to the individual patient whether someone should be seen face-to face. It is also a vital clinical risk management exercise for any GP practice, noting the significant number of clinical negligence claims which (pre-pandemic) have stemmed from a failure to examine a patient in person – and simply rely on a telephone triage or consultation. There also is the real possibility of a potential legal challenge, based on discrimination against those who are unable adequately to access services by reason of an insistence on remote consultations. 1 2

See DHSC, Our plan for improving access for patients and supporting general practice, 14 October 2021, see bit.ly/3NHS-News-Oct-21. A change to the NHS Standard Contract could alter the terms on which GP Practices are required to contract with CCGs.

E  REFERRAL TO NHS SECONDARY CARE Eligibility 7.13 The opportunities for a patient to have an influence over elective referrals made by their general practitioner is formally set out in Pt 8 of the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 (SI 2012/2996) (referred to here as ‘the Commissioning Regulations’), entitled ‘Standing rules: choice of health service provider’. The definition of ‘elective referral’ in reg 38 includes referrals ‘by a general medical practitioner, general dental practitioner or optometrist to a health service provider for treatment that is not identified as being immediately required at the time of referral.’1 Under reg 40, the following services are specifically excluded from being regarded as an elective referral: ●● ●● ●●

cancer services, which are subject to the 2-week maximum waiting time; maternity services; any service where it is necessary to provide urgent care.

In addition, patients who are detained under the Mental Health Act 1983, detained in or on temporary release from prison, or serving as a member of the armed forces do not fall within Pt 8. For referrals that fall within elective referrals, reg 39(1) and (2), the ‘relevant body’ – currently the CCG – must make arrangements2 to ensure that, for a first outpatient appointment with a consultant or member of the consultant’s team,3 304

Access to Healthcare – Choice 7.15 the person is given the choice of ‘any clinically appropriate health service provider with whom any relevant body has a commissioning contract for the service required as a result of the referral.’ There is no requirement that the health service provider has a commissioning contract with the same CCG as the patient’s GP practice. 1

Mental Health services had previously been excluded from the ambit of Pt 8, but this exclusion has been removed, and patients may now exercise choice in a similar way in relation to mental health as referrals for physical health problems. 2 The arrangements include, under reg 39(5), ‘such arrangements as are necessary to ensure that a person may make the choices specified in those paragraphs where that person – (a) has not been offered that choice by the person making the initial referral; and (b) notifies the relevant body who has responsibility for that person that that choice was not offered.’ Thus, where a patient’s own GP has not given them the choice to whom the initial referral is to be made, upon being informed of this by the patient, the CCG must make arrangements to remedy this. 3 Under reg 39(2)(b) for mental health services this includes a clinically appropriate team that is not consultant led.

7.14 A CCG must not only make arrangements to ensure this choice is available, but is under a duty to make arrangements to ensure that the availability of choice under the arrangements it makes pursuant to reg 39 are ‘publicised and promoted’.1 In practice, the referral is made not by the patient, but by their GP. The degree of dialogue between the GP and their patient regarding options for referral will no doubt vary. In many cases it might be that there is a mutual assumption that the local general hospital, specialist diabetic clinic or physiotherapy service etc will be used. There may be other occasions on which a patient presents their GP with a clear preference to see a particular consultant or their team, with whom the GP is unfamiliar. In each case, reg 39(6) provides that the determination as to who a ‘clinically appropriate health service provider’ may be is that of the patient’s GP, rather than the patient or the CCG. There is no formal route for a CCG to refuse the GP’s referral to a specific secondary care provider, provided it is to a health service provider that holds a commissioning contract with a CCG. 1

Commissioning Regulations reg 42.

Choice as to nature of secondary care subsequently provided 7.15 The patient’s right to choose under Pt 8 of the Commissioning Regulations extends only up to the first out-patient appointment with the chosen health service provider. Onward referrals for continuing care in respect of an existing condition are not included within the scope of Pt 8. If, following this first consultation and discussion with the patient, the secondary care provider is of the view that further treatment is required – such as further investigations, a course of drug treatment or surgery – it will be for that secondary care provider to inform the CCG what treatment is proposed or recommended.1 Thus the patient is granted little, if any, formal opportunity to make subsequent choices, beyond those options for treatment offered by the secondary care provider. Where a referral into secondary care has been made, and the CCG is satisfied that the patient has not commenced, or will not commence, treatment within 18 weeks of their referral, the CCG must take ‘all reasonable steps’ to ensure 305

7.15  Access to Healthcare – Choice that the patient is offered an alternative appointment to commence treatment with a different health service provider at an earlier time.2 The CCG is under a duty to take all reasonable steps and not required to guarantee that an earlier date for treatment can be arranged.3 It seems highly likely that in the current circumstances of very severe backlogs for treatment within the NHS, there will be many occasions when this aspiration will not be met. 1 2 3

Where a difference arises between the treating team and the CCG about what treatment will be funded, see Chapter 8: Access to Healthcare – Funding. Regulation 48(1). Under reg 49 there are numerous exceptions to this duty, including where the patient did not attend for an appointment, or re-arranged the date, the patient was offered a date for commencement of treatment within 18 weeks etc. Transplant and maternity services are specifically excluded.

Choices by the CCG 7.16 An interesting corollary to the issue of patient choice is that of choice by the Trust or CCG in the commissioning of medical services and treatment. While a CCG has the freedom to secure – or advise that its NHS Trusts secure – services, pharmaceuticals, appliances or equipment from whichever supplier may be most cost effective, it must do so lawfully and in a way that does not encourage unlawful decision-making by clinical staff. In Bayer Plc v NHS Darlington CCG1 the claimant pharmaceutical manufacturer challenged the advice given by the CCG to NHS Trusts that its clinicians should consider prescribing an unlicensed – but recognized by NICE to be a safe and effective – drug for use in treating wet age-related macular degeneration, in preference to Bayer’s own licensed medication, which was also effective, but very significantly more expensive. The alternative medication was licensed for use in the treatment of bowel cancer, and its use for wet age-related macular degeneration required it to be ‘repackaged’ into much smaller doses for injection into the eye. There was evidence – albeit not accepted by Bayer – that this could be done safely as part of specialist pharmacology services available at some NHS Trusts. The claim for judicial review was dismissed at first instance. On appeal Bayer contended that the practice undermined patient’s rights of access to NICE recommended treatments, introduced information for patients which was misleading and inaccurate, was contrary to GMC guidance on the prescription of unlicensed medicines, and was potentially unlawful.2 he Court of Appeal concluded: ●●

●● ●●

There was no evidence that the practice being followed was unsafe and a NICE guidance document to the CCGs had made it clear that NICE was of the view the repackaged medication was as safe as the licensed alternatives.3 The information sheet for patients made it clear that the repackaged medication was the preferred treatment on cost grounds the patient could choose to be treated with the more expensive, licensed medication.4 The GMC’s guidance in Good Medical Practice on the prescribing of unlicensed medication did not prevent a doctor from lawfully prescribing repackaged pharmaceuticals in appropriate circumstances. Indeed, in the particular circumstances of the case, the GMC had issued specific guidance that the use of the repacked pharmaceuticals on its own would not, in this case, cause the GMC concerns.5 306

Access to Healthcare – Choice 7.17 The appeal was dismissed, the Court of Appeal holding that it was lawful for the Trusts to use the repackaged medication. The case confirmed the importance of providing information to patients in order to enable them to make informed decisions. 1 2 3 4 5

[2020] EWCA Civ 449. Ibid, para 119. Ibid, para 123. Ibid, para 11. Ibid, para 188.

The personal health budget 7.17 The ‘personal health budget’ puts decision-making as to healthcare provision directly in the power of the patient. It is concerned with providing personal budgets to patients with long-term health needs or continuing healthcare requirements that would otherwise require community-based healthcare provided and funded via the CCG. There are parallels with the system for personal budgets and direct payments for social care,1 although the two systems are not identical. Following an expansion of the scheme, it is now also available to long-term wheelchair users and many of those entitled to aftercare under s 117 of the Mental Health Act 1983 (‘MHA’), when discharged following a period of detention under s 3, 37, 45A, 47 or 48 of the MHA. By February 2020, just under 89,000 people received a personal health budget, and there is a government commitment to 200,000 people having personal care budgets by 2024 as part of the NHS Long Term Plan.2 Details of the operation of the scheme are outside the scope of this work, but there is guidance available from the NHS website.3 The statutory entitlement to be considered for a personal health budget is contained in reg 3(1) of the National Health Service (Direct Payments) Regulations 2013 (SI 2013/1617) (‘the Direct Payments Regulations’), which broadly defines those potentially eligible as a person for whose benefit anything may or must be provided or arranged by a health body under the National Health Service Act 2006 Act, or (in the case of a CCG or then NHS Commissioning Board), under ‘any other enactment’, provided the patient consents to the making of a direct payment to them. There are specific regulations extending the potential for personal health budgets to children and those who lack capacity, provided certain requirements and safeguards are met.4 Thus, while the focus of primary health budget may be those who have a primary health need,5 there are few initial limitations on who might be potentially eligible. However, there then follow within the Direct Payments Regulations numerous limitations on those who would be regarded as eligible for a personal health budget.6 If a person is not automatically ineligible, under reg 3(2) a CCG may determine if a direct payment should be made, having regard to: (a) (b) (c)

whether it is appropriate for a person with that person’s condition; the impact of that condition on that person’s life; and whether a direct payment represents value for money.

This will allow a CCG to determine, by reference to objective criteria,7 whether a personal health budget is appropriate in the individual circumstances. 307

7.17  Access to Healthcare – Choice Moreover, there are significant limitations on what a personal health budget may be spent on. For example, it cannot be used to fund: ●● ●● ●● ●● ●●

primary medical services; vaccination, immunisation or screening; surgical procedures; the supply or procurement of drugs or alcohol; debt repayment (other than in respect of services specified in the care plan).

1 2

Under the Care and Support (Direct Payments) Regulations 2014. Version 1.2, para 1.41, accessible at www.longtermplan.nhs.uk/publication/nhs-long-termplan/. See for example, Guidance on Direct Payments for Healthcare: Understanding the Regulations (20 March 2014), found at www.england.nhs.uk/publication/guidance-on-directpayments-for-healthcare-understanding-the-regulations/. See reg 4 for children and reg 5 for those who lack capacity. The process and criteria to establish that a person as has a primary health need is set out in reg 21 of the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012. See the Schedule to the Direct Payments Regulations, which excludes from direct payments those subject to a drug or alcohol rehabilitation or treatment requirement, or who are released from prison on licence/under a suspended sentence. As to which, see Guidance on Direct Payments for Healthcare: Understanding the Regulations, at section 4.4, Ability to manage direct payments.

3 4 5 6 7

7.18 Despite these various constraints, a personal health budget enables suitable people to exercise very significant autonomy over the management of their own ongoing health needs or for carers to be able to make similar choices for a child or person lacking capacity. The person is able to formulate a care plan with the CCG and use the budget to employ staff1 and commission therapies or obtain equipment tailored to their individual needs. There is the potential for wheelchair users to procure for themselves a wheelchair of a higher specification than might be available if supplied through NHS procurement. Where a person lacks capacity and there is no family member who is willing or able to coordinate the delivery of care, the CCG may appoint a third party ‘broker’ to deliver a package of care according to an agreed care plan and budget. Where it is in the patient’s best interests to do so, the Court of Protection may authorise such an arrangement even in the face of opposition from family carers.2 1

2

Specialist assistance is available for those who are likely to require it in relation to payroll and employment bureaucracy. Payment for such assistance may be included in the budget and is treated as a supply of ‘services which are directly connected with the provision of care’ for the purposes of tax and VAT, see Cheshire Centre for Independent Living v The Commissioners for Her Majesty’s Revenue and Customs [2019] UKFTT 0354 (TC). Harrow CCG v IPJ, IJJ, AJ [2018] EWCOP 44. See also Chapter 3: Deciding for Others – Adults.

7.19 Where a care plan and personal health budget has been set, there will be limited scope to challenge the CCG in relation to individual decisions taken in the implementation of that plan. In R (on the application of JF) v NHS Sheffield Clinical Commissioning1 it was alleged that the CCG was in breach of its duty pursuant to the National Health Service Act 2006 s 3 in deciding that, although JF received 24 hour 1:1 care in her home, she did not need such supervision during a stay as a hospital inpatient. It was alleged that, while the hospital had deemed such 1:1 care to be unnecessary, the CCG was obliged to continue to make arrangements for it. In dismissing the application, the 308

Access to Healthcare – Choice 7.21 court was keen to stress that it was not the role of the CCG to micro-manage JF’s care: ‘Typically, as the label “NHS Continuing Healthcare” suggests, arranging the provision of services will require the commissioning of multiple tailored inputs over a protracted period. Even so, the CCG’s level of involvement need not be greater than necessary to satisfy itself that it has commissioned all necessary services, while leaving the day to day application of clinical judgment to providers within their sphere of expertise.’2 1 2

[2014] EWHC 1345 (Admin). Ibid, para 46.

F  THE HUMAN RIGHTS ACT 1998 7.20 As the NHS is a public authority, under s 6(1) of the Human Rights Act 1998 (‘HRA’), it is unlawful for it to act in a way that is incompatible with the rights set out in the European Convention on Human Rights (‘ECHR’). The organisations delivering NHS services on its behalf also fall within the ambit of s 6(1). A person may bring court proceedings where it is claimed that such a public authority has breached its obligations under the ECHR, and that person is a victim of the unlawful act. Although the HRA has not provided an alternative easy route for patients to challenge healthcare decision-making, it does nevertheless have implications for the management of healthcare. Over the last two decades or so, there have been a small number of cases in which articles of the ECHR have been successfully deployed to secure a treatment outcome or compensation for a failure to provide healthcare.

Article 8 7.21 Article 8 of the ECHR provides ‘everyone has the right to respect for his private and family life, his home and his correspondence’. This can be used to argue that (a) a refusal of treatment will have a disproportionate impact on someone’s human dignity; and/or (b) that the decision-making process which leads to an interference with Art 8 rights must engage with its content. The former substantive argument has been applied in healthcare decision making less than the latter procedural argument. The procedural requirements of notification and consultation were recognised in the context of ‘do not resuscitate notices’ in R (on the application of Tracey) v Cambridge University Hospitals NHS Foundation Trust, in which it was held that the obligations under Art 8 did not extend to offering to obtain a second opinion (albeit that might be required on other grounds).1 The importance of the obligation to consult where possible before completing such a notice was brought to the fore in the subsequent case of Winspear v Sunderland NHS Foundation Trust.2 In Winspear the claimant was the mother of, and carer for, her son who had severe cerebral palsy from birth, and had never had capacity. Following her son’s admission to hospital, a clinician took the decision to place a ‘do not attempt cardiopulmonary resuscitation’ notice in his notes, without consulting her first. The court found that there was the opportunity either to consult with her or to delay the completion of 309

7.21  Access to Healthcare – Choice the notice until there had been an opportunity for discussion. Accordingly, the clinician had not complied with s 4(7)(b) of the Mental Capacity Act 2005, as it had been practicable and appropriate to consult with the patient’s carer prior to the decision. Following Tracey, the placing of the notice without such consultation was a breach of the claimant’s son’s Art 8 rights, and the court made a declaration accordingly. It declined to award damages on the basis that the declaration constituted just satisfaction, taking into account the good faith of the clinician who had placed the notice, that the notice had been cancelled after eight hours, and that its temporary placement had not had an effect on the treatment received. 1 2

[2014] EWCA Civ 822, [2015] QB 543 at paras 64 and 95. [2015] EWHC 3250 (QB), [2016] QB 691.

7.22 For Art 8 to provide a basis for arguing that a particular treatment should be provided relies on carving a positive obligation out of the language of Art 8, which is focused on protecting individuals against state interference. In R (on the application of Condliff) v North Staffordshire PCT the Court of Appeal noted that public authorities have to ‘grapple … with the difficult ethical and practical questions involved’ when setting policy and making decisions,1 but stated that – whilst the principle of positive ECHR obligations had been accepted – there was no reported case in which it had been applied to require medical treatment to be given to a particular individual.2 In the subsequent case of R (on the application of Dyer) v The Welsh Ministers3 the court stated that Art 8 did not give: ‘a patient a right to demand any particular type or location of treatment. In particular, it does not give such a right regardless of the needs of the rest of the health service, and regardless of the rights and interests of others, including other patients and healthcare workers.’ The same point was made by the Supreme Court in McDonald v Royal Borough of Kensington & Chelsea4 where the issue concerned how to meet the nighttime continence needs of someone with limited mobility. The local authority had changed from providing the service user with direct assistance to use the toilet to the far cheaper option of providing incontinence pads and sheets. Lord Brown reviewed three medical cases from the European Court of Human Rights which concerned, in turn, refusal to supply a robotic arm, insufficient haemodialysis and lack of assistance to vote,5 noting that all had been found to be inadmissible.6 Further, the Supreme Court noted that Art 8 was not absolute, and that the decision made would clearly be justified under Art 8(2).7 1 2

3 4 5 6 7

[2011] EWCA Civ 910 at para 47. Ibid, para 41. Note that in R (Tracey) v Cambridge University Hospitals NHS Foundation Trust [2014] EWCA Civ 822, [2015] QB 543 at para 41 the Court of Appeal interpreted Condliff as saying that Art 8 was engaged, but either there was no interference with Art 8 or that any interference was justified under Art 8(2). [2015] EWHC 3712 (Admin) at para 138(i). [2011] UKSC 33, [2011] 4 All ER 881. Sentges v The Netherlands (2003) 7 CCL Rep 400, ECtHR, Pentiacova v Moldova (2005) 4 EHRR 209 and Molka v Poland (Application No 56550/00) (unreported,11 April 2006), ECtHR, respectively. McDonald (n4 above), paras 16–19. Ibid, and note in particular Lord Brown at para 16: ‘the clear and consistent jurisprudence of the European Court of Human Rights establishes “the wide margin of appreciation enjoyed by states” in striking “the fair balance … between the competing interests of the individual and of the community as a whole” and “in determining the steps to be taken to ensure compliance

310

Access to Healthcare – Choice 7.25 with the Convention”, and indeed that “this margin of appreciation is even wider when … the issues involve an assessment of the priorities in the context of the allocation of limited state resources”.‘

Article 3 7.23 Article 3 provides, ‘No one shall be subjected to torture or to inhuman or degrading treatment or punishment.’ There are circumstances in which a failure by the state to provide medical treatment or nursing care, provided it reaches a minimum level of severity, can amount to ‘inhuman and degrading treatment’, and thus a breach of Art 3. Suffering attributable to the progression of a disease may amount to such treatment if the State can prevent or ameliorate such suffering and does not do so.1 A direct application of this principle arose in the case of R (on the application of CSM) v Secretary of State for the Home Department.2 CSM was an asylum seeker, who had contracted HIV as a child and required daily antiretroviral medications for life. A breach of Art 3 was established on the basis that the defendant had failed to take reasonable steps to provide him with the necessary medication in detention and had failed to put in place an effective framework for the protection of detainees with HIV. The claimant was entitled only to declaratory relief, rather than damages, as he had not actually suffered a deterioration in his condition as a result of the failures. The circumstances of the CSM case can be seen as exceptional, as this was an inexcusable failure by the system to provide a patient with potentially life-saving medication that it had already been determined he was entitled to receive. It will only be in the rarest of cases that reliance on Art 3 might lead to a patient being able to secure for themselves medical treatment that would otherwise be unavailable, such as via the individual funding request.3 In R v North West Lancashire Health Authority ex p A, Auld LJ stated, ‘[i]t is plain … that article 3 was not designed for circumstances … where the challenge is as to a health authority’s allocation of finite funds between competing demands’.4 1 2 3 4

D v UK (1997) 24 EHRR 423 at 446–449, paras 46–54. [2021] EWHC 2175 (Admin), [2021] 4 WLR 110. As to which, see Chapter 8: Access to Healthcare – Funding, para 8.18ff. [2000] 1 WLR 977 at 996. A very similar observation, in relation to limited bed capacity, was made in An NHS Foundation Trust v MB [2020] EWHC 882 (QB) at para 55.

7.24 Where there have been failures to provide medical or nursing care that have led to personal injury, a more reliable route to recovery will normally be via a common law clinical negligence claim, particularly as the threshold to establish a breach is far higher for Art 3 than for clinical negligence. In R (on the application of Hall) v University College London Hospitals NHS Foundation Trust the court noted in relation to this threshold that; ‘Absent physical injury, it requires such severity that undermines or has a significant adverse impact on the personality or will of the individual, or some impact akin to that’.1 1

[2013] EWHC 198 (Admin) at para 26, citing Kalashnikov v Russia [2003] 36 EHRR 34 at para 95.

7.25 Article 3 is regularly relied upon as a ground to resist deportation, in circumstances where, due to the absence of appropriate treatment in the 311

7.25  Access to Healthcare – Choice receiving country or the lack of access to such treatment, a person would be at risk of dying or would face a real risk of being exposed to a serious, rapid and irreversible decline in their state of health resulting in intense suffering or to a significant reduction in life expectancy.1 In Pretty v UK the ECtHR found that no positive obligation arises under Art 3 of the ECHR to require a state either to give an undertaking not to prosecute a patient’s spouse if they assist a terminally ill patient to commit suicide or to provide a lawful opportunity for any other form of assisted suicide.2 1

2

See AM (Zimbabwe) v Secretary of State for the Home Department [2020] UKSC 17, [2021] AC 633. The decision of the Supreme Court in AM represented a significant shift in approach by the domestic courts, following the decision of the ECtHR in Paposhvili v Belgium (41738/10) [2017] Imm AR 867, [2016] 12 WLUK 304. (2002) 35 EHRR 1. See further Chapter 16: The Right to Die?. See below in relation to the relevance of Art 2 to such claims, and see Chapter 8: Access to Healthcare – Funding.

Article 2 7.26 Article 2(1) of the ECHR states, ‘Everyone’s right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which this penalty is provided by law.’ In the context of healthcare, this imposes on a state a duty not only to have in place a healthcare system which includes appropriate measures for the protection of patients’ lives, but to have in place an effective, functioning regulatory network to ensure the system is implemented.1 In the context of such a framework, an episode of clinical negligence would not, in itself, amount to a violation of Art 2, as stated in Fernandes v Portugal: ‘Even in cases where medical negligence was established, the Court would normally find a substantive violation of Article 2 only if the relevant regulatory framework failed to ensure proper protection of the patient’s life. The Court reaffirms that where a Contracting State has made adequate provision for securing high professional standards among health professionals and the protection of the lives of patients, matters such as an error of judgment on the part of a health professional or negligent coordination among health professionals in the treatment of a particular patient cannot be considered sufficient of themselves to call a Contracting State to account from the standpoint of its positive obligations under Article 2 of the Convention to protect life …’2 In relation to the provision of care, it must follow that Art 2 cannot be relied upon in order to secure any higher standard of healthcare than that imposed via the common law duty to exercise a reasonable standard of care. However, Art 2 will be relevant when a systemic or structural dysfunction in hospital services results in a patient being deprived of access to life-saving emergency treatment, where the authorities know about or ought to know about that risk and fail to take the necessary measures to prevent that risk from materialising.3 As to patient choice, in R (on the application of Rogers) v Swindon NHS Primary Care Trust4 a challenge was made to the refusal by a PCT to provide the claimant with the drug Herceptin to treat breast cancer. One of the grounds of challenge was that the decision infringed her right to life and right not to suffer discrimination in the protection of that right. On appeal against the 312

Access to Healthcare – Choice 7.27 dismissal of her claim, the Court of Appeal focussed on the rationality of the refusal to fund the treatment, noting that: ‘whether article 2 is engaged or not, the case is concerned with a decision which may be a life or death decision for the appellant. In these circumstances … it is appropriate for the court to subject the decision to refuse funding for the treatment (and thus in practice the treatment) to rigorous scrutiny.’5 Having concluded that the policy adopted in the particular case was irrational, and therefore unlawful, the court did not regard it as necessary to consider the possible impact of Arts 2 or 14. Following Rogers, challenges to the funding of potentially life-saving treatment have focussed on the lawfulness of the policy and/or decision taken under it, rather whether there might be a free-standing breach of Art 2 if the treatment is not provided.6 1 2 3 4 5 6

See the important case of Fernandes v Portugal (56080/13), (2018) 66 EHRR 28. Ibid, para 187. Akdoğdu v Turkey No 46747/99, 18 October 2005. [2006] EWCA Civ 392. Ibid, para 56. This is addressed in detail in Chapter 8: Access to Healthcare – Funding.

7.27 In relation to patient – or parental – choice in end of life decisions, the ECtHR has formally reserved to itself the power to review whether or not a state has complied with its obligations under Art 2.1 Nevertheless, the ECtHR has noted on a number of occasions that there is not a consensus between member states in favour of permitting the withdrawal of artificial lifesustaining treatment, although the majority of states appear to allow it. Thus, in its decisions, the ECtHR acknowledges a marked deference to the margin of appreciation applied in individual member states, both as to the substantive decisions as to withdrawal and the detailed procedural arrangements surrounding these decisions.2 In Gard v UK3 the parents of a terminally ill child sought to challenge the decision of the Supreme Court that it was in their child’s best interests not to be subjected to experimental treatment which the domestic courts had all found would offer no benefit, and would prolong his suffering. The challenge was made on a number of grounds, including both Art 2 and Art 8. The ECtHR stated that, despite the lack of consensus as to withdrawal of life-preserving treatment, there was a consensus that the best interests of the child must be of primary consideration.4 In unanimously finding that the application was manifestly ill founded, the ECtHR reiterated that: ‘it is not for the Court to substitute itself for the competent domestic authorities but rather to review under the Convention the decisions that those authorities have taken in the exercise of their power of appreciation.’5 The courts have accepted that Art 2 gives rise to an ‘operational duty’ on the State to do all that could reasonably be expected to prevent a patient committing suicide.6 The cases have concerned inquests and damages claims following failed provision, but a legal challenge could be made seeking provision in anticipation of such a risk, albeit it may be hard to envisage how this might arise in practice – other than via a challenge to decisions to decline to fund/ provide treatment. 1 2

See Lambert v France [GC] 46043/14 at paras 147–148. See for example Hristozov v Bulgaria (47039/11 and 358/12) and Dubská v Czech Republic (2015) 61 EHRR 22.

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7.27  Access to Healthcare – Choice 3 4 5 6

Admissibility decision, (2017) 65 EHRR SE9. Ibid, para 107. Ibid, para 123. See Chapter 4: Deciding for Others – Children, para 4.25. See Savage v South Essex Partnership NHS Foundation Trust [2009] 1 AC 681 and Rabone v Pennine Care NHS Foundation Trust [2012] UKSC 2, [2012] 2 AC 72 and see Chapter 17: Treatment of suicidal patients, paras 17.19, 17.24 to 17.32.

Article 14 7.28 Article 14 provides that the rights contained in the other articles of the Convention must be secured without discrimination. Under Art 14 there is no free-standing right not to be subject to discrimination. However, given that the provision of healthcare engages Arts 2 and 8, there is significant potential for differences in the provision of healthcare to be challenged on the basis that it is discriminatory, either by reference to Art 14 or the Equality Act 2010. In R (on the application of A) v Secretary of State for Health1 the Supreme Court considered a challenge to the Secretary of State’s refusal to make provision for free, lawful termination of pregnancies in England for those women who were citizens of the UK but who were usually resident in Northern Ireland (where there was no such provision). The first ground of appeal was that, having deemed that for the purposes of his duty under s 3(1) of the NHS Act 2006 women usually resident in England had a reasonable requirement for abortion services, the only rational decision was also to provide such services in England for UK citizens usually resident in Northern Ireland. The second ground was that the Secretary of State for Health’s decision violated the appellants’ rights under ECHR Arts 8 and 14 because their right to private life and family life had not been secured without discrimination on the ground of status. By a majority of 3-2 the Supreme Court found that the policy was lawful. It concluded that each of the four constituent countries made its own arrangements for the provision of free health services for those usually resident within its area and that the Secretary of State was entitled to respect the democratic decision of the devolved administration in Northern Ireland.2 On the issue of discrimination in the upholding of ECHR rights, the Secretary of State accepted that the appellants’ Art 8 rights were engaged and that the application of English law led to a significant difference in treatment within England, arising from where in the UK a person was usually resident. However, he argued – and the majority of the Supreme Court agreed – that this difference in treatment was justified by: ‘the Secretary of State’s resolve to stay loyal to the overall scheme for separate provision of free health services within each of our four countries and to the democratic decision reached in Northern Ireland in relation to abortion services.’3 The dissenting judgments in the Supreme Court speak powerfully of the hard-won rights of pregnant women to exercise autonomy in relation to their treatment and care. Baroness Hale’s view was that to uphold the Secretary of State’s decision would be: ‘to deny pregnant women from Northern Ireland the same right to choose what is done with their bodies as is enjoyed by all other pregnant citizens of

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Access to Healthcare – Choice 7.30 the United Kingdom. It is inconsistent with the principle of equal treatment which underlies so much of our law.’4 The history of the provision of abortion services in Northern Ireland since the Supreme Court’s decision in June 2017 has been controversial and complicated, both legally and politically. Following a change in the law – passed in Westminster during a period when devolution was suspended – early termination services on the NHS were available for a time in Northern Ireland. However, at the time of writing they remain temporarily paused. 1 2 3 4

[2017] UKSC 41, [2017] 1 WLR 2492. Ibid, para 20. Ibid, para 35. Ibid, para 95.

G DISCRIMINATION 7.29 The law relating to discrimination in the provision of healthcare is a complex area, beyond the scope of this work.1 Nevertheless, a broad understanding of the interaction between the healthcare options offered to patients and the need to avoid unlawful discrimination in access to healthcare is key to ensuring that appropriate, and lawful, options are given and decisions taken. In both state-funded and private healthcare there is an obligation imposed by the Equality Act 2010 not to discriminate unlawfully on the basis of any of the nine protected characteristics identified in that Act. In relation to state-funded healthcare there is an additional obligation on NHS bodies to promote equality in access to healthcare. 1

The Equality and Human Rights Commission has produced a detailed and helpful Statutory Code of Practice relating to services, public functions and associations, Equality Act 2010 Code of Practice: Services, public functions and associations Statutory Code of Practice (2011), see https://bit.ly/Equal-Code.

Discrimination in the provision of services 7.30

Section 29 of the Equality Act 2010 provides;

‘(1) A person (a “service-provider") concerned with the provision of a service to the public or a section of the public (for payment or not) must not discriminate against a person requiring the service by not providing the person with the service. ‘(2)  A service-provider (A) must not, in providing the service, discriminate against a person (B)– (a) (b) (c)

as to the terms on which A provides the service to B; by terminating the provision of the service to B; by subjecting B to any other detriment.’

This applies to the provision of medical services, including both advice and treatment. The nine protected characteristics are: age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex and sexual orientation. However, s 29 does not apply in relation to age (for people under 18) or marriage/civil partnership.1 315

7.30  Access to Healthcare – Choice It can easily be seen how many of these characteristics may have an impact on the provision of healthcare, as there are particular health conditions that are predominantly associated with many of them. In other scenarios, there is the possibility that treatment options offered may be influenced directly or indirectly by the views of treating clinicians in relation to those same characteristics. 1

Equality Act 2010 s.21(1).

Direct and indirect discrimination 7.31 Broadly speaking, discrimination falls into two categories: direct and indirect discrimination. ●● ●●

Direct discrimination is where the protected characteristic is a reason for the decision. Indirect discrimination occurs where there is a provision, criterion or practice (eg criteria in order to be eligible for treatment) which impacts disproportionately on, and to the disadvantage of, people who have a protected characteristic, compared to a person who does not have the same characteristic. In relation to disability discrimination, it may also be that the difference in treatment is for a reason arising out of that person’s disability, rather than because they have a disability.

A key difference between the two forms of discrimination is that indirect discrimination is capable of being justified and, if so, may not be unlawful discrimination if it can be shown that it is a proportionate means of achieving a legitimate aim. Direct discrimination is, subject to a few exceptions,1 generally unlawful. In either case, a mere difference in treatment does not amount to unlawful discrimination; the treatment must be less favourable, ie to the patient’s disadvantage.2 Where the result is that a patient is provided with fewer treatment options or cannot access their treatment in as convenient or timely way as a person without a protected characteristic, it seems likely that it will be straightforward to establish such disadvantage, although this may not necessarily be the case if the alternatives not offered are plainly no more effective than those which are. 1 2

For example, direct discrimination on grounds of age or disability is potentially capable of being lawful if it can be shown to be a proportionate means of achieving a legitimate aim. For discrimination arising from disability (s 15) or pregnancy/maternity (s 17), the requirement is that the discriminatory treatment is ‘unfavourable’.

7.32 A key to establishing less favourable treatment is often to identify an appropriate comparator (whether hypothetical or real), being a person who was in a similar position to the claimant, but not having the same protected characteristic. In R (on the application of AC) v Berkshire West PCT a claim was brought challenging a refusal to fund breast augmentation for a transgender female. The claimant had received hormone treatment for 15 years and lived as a woman. She applied to the PCT for funding for breast augmentation. Her psychiatrist and GP supported the application on the basis that this was the best treatment for her gender identity disorder. The PCT’s policy was that gender reassignment surgery was not supported by a good evidence base and was not routinely funded. Moreover, it relied upon a review of the available evidence 316

Access to Healthcare – Choice 7.33 that had concluded that there was an ‘absence of reliable evidence’ that breast augmentation was clinically effective for the long-term resolution of poor body self-image, and associated psychological difficulties, for either biological women or trans-females.1 The Court of Appeal dismissed the appeal on the basis that the funding decision was not irrational. It went on to consider the argument that treating the claimant and a natal female in the same category for the purposes of funding breast augmentation surgery was unlawful discrimination, as such a policy incorrectly treated trans-females and natal females alike, when they were not. The claimant identified a number of features it was said constituted significant distinctions between a trans-female and a natal female, meaning that the claimant’s clinical need was different to a natal female. In response, the defendant argued that, for discrimination purposes, the appropriate comparator for a trans-female who had a clinical need for breast augmentation would be a natal female who also had a clinical need for breast augmentation. The Court of Appeal dismissed the discrimination claim on the basis that, while gender and clinical need were both relevant characteristics, on the evidence available to the defendant, the clinical effectiveness of breast augmentation had not been demonstrated for either category.2 1 2

[2011] EWCA Civ 247. Ibid, paras 56–57.

7.33 In the earliest days of the coronavirus pandemic in the UK, NICE issued a ‘COVID-19 guideline for clinical care’ which included a nine point ‘Clinical Frailty Scale for Frailty Assessment’ (‘CFS’). For those with a CFS score of 5 or more, the guideline suggested it may not be appropriate to provide them with hospital treatment in the event that they became unwell with Covid-19. The guideline went on to suggest that clinicians, ‘sensitively discuss possible “do not attempt cardiopulmonary resuscitation” (DNACPR) decision with all adults with capacity and a CFS score suggestive of increased frailty (for example 5 or more)’.1 Some disabled adults, and the groups representing them, were concerned that the CFS failed to distinguish between those who required care due to pre-existing disability and those who were frail: as a result disabled adults were more likely to score 5 or more on the CFS. It was suggested that the NICE guideline as published was in breach of the Public Sector Equality Duty, was irrational, constituted unlawful discrimination on grounds of disability and might lead to disabled adults with Covid-19 not being offered hospital treatment in circumstances where a non-disabled adult would have been. Faced with this widespread criticism, including a threatened judicial review,2 NICE quickly revised the guidelines to make it clear that the CFS should not be used for people with stable, long-term disabilities, learning disabilities or autism.3 Although disabled people reported that DNACPR notices continued to be discussed with them, this incident does appear to be an example of recourse to discrimination legislation being able to secure improved treatment options for those with a disability. 1 2 3

United Nations Human Rights Office of the High Commissioner, The Socioeconomic Impact of COVID19 on Persons with Disabilities (May 2021) at p 14, found at bit.ly/OHCR-Socio. See Local Government Lawyer, NICE amends Covid-19 critical care guideline after judicial review threat (1 April 2020) at bit.ly/LGL-1-Apr-20. NICE, NICE updates rapid COVID-19 guideline on critical care (25 March 2020) at bit.ly/ NICE-CC-Upd.

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7.34  Access to Healthcare – Choice

Reasonable adjustments for disability 7.34 For those with a disability,1 there is an additional specific obligation on a healthcare provider – set out in s 20 of the Equality Act 2010 – to make reasonable adjustments to prevent that person being put at a substantial disadvantage when they are seeking to access healthcare, compared to a person who is not disabled. A failure to comply with the requirement to make a reasonable adjustment will be regarded as discrimination. There is real scope for a patient who has a disability to challenge the treatment that they are offered – or the arrangements made for providing the treatment – if a public body has failed to make reasonable adjustments in order to avoid substantial disadvantage.2 1

2

The definition of a disability, found in s 6(1) of the Equality Act 2010, is ‘a long-term physical or mental impairment’ which has ‘a substantial and long-term adverse effect’ on the ability to carry out normal day-to-day activities. Cancer, HIV infection and multiple sclerosis are also regarded as disabilities. Part 1 of Sch 1 to the Equality Act 2010 provides further information on what the determination of a disability and is supplemented by statutory guidance on what constitutes a disability. See the Office for Disability Issues, Equality Act 2010 Guidance: Guidance on matters to be taken into account in determining questions relating to the definition of disability: see bit.ly/EqA-Guide. For ‘reasonable adjustments’, see Chapter 7 of the Statutory Code of Practice for services: see para 7.29 n1 above. For an example of the measures that a court may consider reasonable adjustments a local authority should have made in the context of care proceedings involving a deaf parent, see para 142 of A Local Authority v M, F, A, B [2021] EWFC 10.

A clinician’s personal beliefs 7.35 A clinician’s personal beliefs must not be a reason for a patient being offered different treatment options, still less a reason to refuse treatment. The standard expected from the medical profession in relation to equal treatment for patients is unambiguously set out in paras 56–60 of the GMC’s document, Good Medical Practice.1 If the clinician’s personal beliefs relate to a patient’s protected characteristic, it is also likely that a refusal to offer advice or treatment that would otherwise be available to a patient who did not have that protected characteristic would be an act of unlawful discrimination, even if the clinician were to refer the patient to a different colleague who did not hold the same beliefs, albeit the impact on the patient might be mitigated. 1

See General Medical Council’s Good Medical Practice (2013): see bit.ly/GMC-GMP-2013 and para 7.2 above.

The Public Sector Equality Duty 7.36 For state-funded healthcare, s 149 of the Equality Act 2010 sets out the ‘Public Sector Equality Duty’: ‘(1) A public authority must, in the exercise of its functions, have due regard to the need to– (a) eliminate discrimination, harassment, victimisation and any other conduct that is prohibited by or under this Act; (b) advance equality of opportunity between persons who share a relevant protected characteristic and persons who do not share it; 318

Access to Healthcare – Choice 7.37 (c) foster good relations between persons who share a relevant protected characteristic and persons who do not share it.’ The Public Sector Equality Duty imposes a duty on the decision-makers to have regard to eliminating discrimination and advancing equality and to the way in which risks to these goals may be eliminated before making a decision.1 In addition, there are express statutory duties under the NHS Act 2006 on the Secretary of State for Health, NHS England and CCGs to ‘reduce inequalities between patients’.2 Challenges under the Public Sector Equality Duty or the duty to reduce inequalities between patients will rarely result in an individual patient obtaining services for their own benefit. This would require a challenge under the substantive obligations within the Equality Act 2010 (such as s 29) which require people to be treated equally. In R (on the application of Rose) v Thanet CCG3 the claimant challenged a CCG’s refusal to fund oocyte preservation prior to her undergoing gonadotoxic therapy which would be likely to render her infertile. The CCG had decided it would fund semen preservation but not oocyte preservation. The claimant argued that semen and oocytes were inherently gender-based. This was therefore direct discrimination which could not, in law, be justified, on grounds of cost or at all. The court rejected this on the basis that there were biological differences between semen and oocytes. However, Thanet’s policy was found to be in breach of the Public Sector Equality Duty because, despite an ‘equality scoping exercise’ recognising that the gender issues arose, the CCG failed to grapple with these issues or others connected with it. The court held that a proper policy on assisted reproduction would need to consider the evidence base for semen and oocyte preservation, the guidance from NICE and cost. The court observed that: ‘… one cannot help feeling that some decision-makers have a more favourable mindset towards semen cryopreservation because, put bluntly, semen is cheaper to obtain and to freeze.’4 While the court made a finding that the CCG had failed to comply with its PSED, this did not give rise directly to any relief being granted.5 1

2 3 4 5

These principles are summarised in Bracking v Secretary of State for Work and Pensions [2013] EWCA Civ 1345, [2014] EqLR 60 at para 25. They include a duty to obtain relevant information, for the decision-maker personally to consider that information in advance of making a decision and to do so ‘in substance, with rigour and with an open mind’. NHSA 2006 ss 1C, 13G and 14T. [2014] EWHC 1182 (Admin), (2014) 138 BMLR 101. Ibid, paras 121–122. Ibid, para 123–126. It is unclear from the judgment whether, in light of the decision, the claimant was subsequently able to secure funding for the oocyte freezing treatment she was seeking.

H  CONCLUSION 7.37 There is no single route by which a patient – or someone acting on their behalf – is able, in all circumstances, to secure for themselves the NHS treatment that they believe is most appropriate or effective for them, or a meaningful choice as to how, when or by whom such treatment is given. The development that has provided a patient the greatest degree of choice in their own healthcare has been the personal health budget, although this is only 319

7.37  Access to Healthcare – Choice available to some patients with ongoing care or equipment needs and does not cover many aspects of acute or inpatient treatment. While patients do have a wide choice in who they see as their GP and the destination of a first referral made on their behalf by their GP, thereafter they are very much in the hands of the CCG as to how much influence they will have over the treatment options offered to them. Where there continues to be real disagreement between a patient and their clinician, it will often be the case that a second opinion is arranged but the legal basis for asserting a right to a second opinion on the NHS – still less to the treatment the patient feels will be most appropriate or effective – is weak. However, some of the cases identified above do demonstrate that, where a healthcare body has acted unlawfully in failing to make a treatment option available to a patient, recourse to the courts may result in the desired outcome.

For updating material and hyperlinks related to this chapter, see www. serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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Chapter 8

Access to Healthcare – Funding

A B C

D

E

Introduction 8.1 The National Health Service  8.2 The system in January 2022  8.3 The proposed changes  8.4 Statutory duties to provide healthcare in England  8.5 The Secretary of State  8.5 NHS England and clinical commissioning groups  8.6 Reasonable requirements in England and Wales  8.7 Which CCG is responsible?  8.8 Services for people from other countries and other parts of the UK  8.10 Charges for healthcare  8.11 Access to the NHS  8.14 The NHS Constitution  8.16 The role of NICE in approving drugs and other treatments  8.17 Individual decision-making by NHS England and CCGs  8.18 Local Authorities, social care and public health  8.19 Court decisions about access to healthcare  8.23 Will a court require doctors or NHS bodies to provide treatment?  8.23 What is the applicable jurisdiction?  8.24 Will a court require that money be spent on a particular treatment?  8.26 Human rights  8.27 Policy and guidance challenges  8.28 Equality law  8.29 Exceptionality 8.30 Clinically effective  8.34 Obtaining and interpreting evidence  8.35 Conclusion 8.36

A INTRODUCTION 8.1 This chapter considers the structure of the provision of healthcare and whether and how the courts will decide what healthcare should be made available for someone by the state. Total expenditure on healthcare in the UK in 2020 was £269 billion, a Covid-inspired 20% nominal increase on 2019 and a 78% increase from the £150.6 billion given in the previous edition of this book for 2013. Of the 321

8.1  Access to Healthcare – Funding total, £220 billion was public sector expenditure, a 25% increase on the figure for 2019,1 including projects such as NHS Test and Trace (£22 billion) and the vaccine programme (£5 billion). Total expenditure per person, including government and private expenditure, averaged £3,317 per person in 2019 (that is, pre-pandemic) compared to £2,350 in 2013.2 Hospitals make up the largest element of government expenditure at 48% of the total with outpatient services, including GPs, at 27% of the total. Taking pre-pandemic figures, private sector expenditure is dominated by pharmaceutical products (33%), appliances (such as glasses and hearing aids) (20%) and dental services (1%). Hospital services make up 18% of total private expenditure. Private sector expenditure increased by only 4% in 2020 but the constituents of that total changed significantly. Public sector healthcare expenditure grew at an average of 8.4% in the 12 years from 1997 and 2.1% in the four years from 2009. The proportion of GDP spent by the UK on healthcare has increased from 6.5% in 1997, then 9.1% in 2013 and 10.2% in 2019. The latter figure compares to 17% in the United States, 11.7% in France and 9.4% in Australia.3 The Covid pandemic has significantly changed this, increasing expenditure on health and reducing the size of the economy so that health expenditure was 12.8% of GDP in 2020 – a rate of increase three times greater than the previous highest annual increase.4 1 Including all public sector expenditure such as prison healthcare as well as the NHS budget. The division between public and private expenditure has remained almost constant since 1997, at about 80% state expenditure. The OECD average is 72%. 2 All figures from Healthcare Expenditure: UK Health Accounts provisional estimates 2020 (ONS, 1 June 2021) and Healthcare Expenditure, UK Health Accounts: 2019 (ONS, updated 1 June 2021). 3 World Bank Global Health Expenditure Database. 4 See n2 above.

B  THE NATIONAL HEALTH SERVICE 8.2 The NHS is a large and complex organisation. About 1.5 million people in the UK work for the NHS (about 1 million full-time equivalent staff), making it at least the world’s fifth largest employer. Of these slightly over half are in clinical roles.1 In 2018/19 there were an estimated 564 million ‘patient interactions’ with GP, community, hospital, mental health and ambulance services, 1.5 million contacts every day. There were 124.9 million outpatient appointments and 17.1 million inpatient stays.2 This is how the NHS is experienced by patients, but ‘the NHS’ is a series of organisations with distinct powers and duties. Legally the NHS is best conceived of as a series of statutory duties to provide medical services to defined groups of people. That system is subject to – yet again – proposals for significant change. First, we address the structure of the NHS in England, as it is now (at the start of 2022), and then there is a brief summary of the proposed changes. 1 2

Full Fact, June 2017. NHS Workforce, King’s Fund. BBC, 20 March 2012. Activity in the NHS, King’s Fund, October 2020. Hospital Activity, NHS Digital, 8 October 2020.

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Access to Healthcare – Funding 8.3

The system in January 2022 8.3 Administratively the NHS in England comprises the following bodies which are subject to legal duties to commission or provide healthcare, as set out in National Health Service Act 2006 (‘NHSA 2006’):1 ●●

●●

●●

●●

NHS England – This is an executive non-departmental body of the Department of Health, which from 2019 includes NHS Improvement. Formally called the National Health Service Commissioning Board, it holds the contracts for GPs and dentists and oversees commissioning by clinical commissioning groups. In 2018/19 it distributed £75.6 billion to clinical commissioning groups and directly commissioned £38 billion of services including primary care (GPs, pharmacists and dentists), specialised services (for example, treatment for rare cancers) and healthcare for prisoners and military personnel.2 The Department of Health has stated that it has a ‘complex’ relationship with NHS England and ‘current arrangements … are extremely complicated and still evolving’.3 Each year the Secretary of State sets the objectives, finances and performance criteria for NHS England by publishing a document called the Mandate.4 The Mandate for 2021/22 contains both broad aims (for example, ‘improving prevention of ill health’ and ‘maintain and improve information sharing’) and some specific, if undated, targets, such as 50,000 more nurses, 50 million more appointments in general practice and building 40 new hospitals (the Covid pandemic being cited as a reason for them being undated). Clinical commissioning groups (‘CCGs’) – These are statutory corporations responsible for commissioning healthcare in a particular area. In 2013 there were 211 CCGs, generally for quite small areas of a few hundred thousand people. A wave of mergers meant that there were 135 CCGs by April 2020, with 74 mergers in April 2020 and a further 38 in 2021.5 CCGs are responsible for commissioning a wide range of services including emergency care, elective hospital care, community health services, maternity services, continuing healthcare and mental health and learning disabilities. CCGs are supported by Commissioning Support Units (‘CSUs’). They do not have defined boundaries and can serve any CCG. These are large organisations in themselves: Midlands and Lancashire CSU reported in late 2021 that it had 1,750 staff and that its services affect 25% of England’s population. Two public health bodies – The UK Health Security Agency (‘UKHSA’) and the Office for Health Improvement and Disparities (‘OHID’). The UKHSA is an executive agency, sponsored by the Department for Health and Social Care. It is responsible for planning and responding to ‘external health threats’. The OHID is a classic public health agency and ‘will drive the prevention agenda across government’ and ‘tackle the top preventable risk factors for poor health’. These two bodies replaced Public Health England with effect from 1 October 2021. Particular providers – There is a wide variety of providers and of legal structures through which provision is made. This includes about 7,000 general practices, pharmacists, dentists, acute trusts providing secondary care (which may or may not have foundation trust status), ambulance trusts, mental health trusts and community health services (including district nurses, walk-in centres and rehabilitation services). 323

8.3  Access to Healthcare – Funding 1 2 3

Understanding the New NHS, published by NHS England (June 2014). NHS Expenditure, House of Commons Library (January 2020). Who’s Accountable? Relationships between Government and Arms-Length Bodies, Public Administration Select Committee, First Report of Session 2014–15. The figures in this paragraph are from para 26 of the Select Committee report. 4 Provided for by s 13A of the NHSA 2006. See also the Framework Agreement between NHS England and the Department of Health. The Mandate was part of the reasoning in R (National Aids Trust) v National Health Service Commissioning Board [2016] PTSR 1093. 5 Health Service Journal, 5 February 2020.

The proposed changes 8.4 On 6 July 2021 the Health and Care Bill was introduced in Parliament, reflecting changes proposed in the NHS Long Term Plan 2019 and the White Paper Integration and Innovation.1 The proposal now is to put ‘Integrated Care Systems’ (‘ICS’) on a statutory basis. These were established as voluntary partnerships bringing together providers and commissioners of NHS services with local authorities to plan health and care services in particular areas. They grew out of ‘Sustainability and Transformation Partnerships’, local partnerships formed in 2016 to develop long-term plans for health and care services. The King’s Fund, the leading health think tank, suggests that ICS could represent (another) significant change: ‘Following several decades during which the emphasis was on organisational autonomy, competition and the separation of commissioners and providers, ICSs depend instead on collaboration and a focus on places and local populations as the driving forces for improvement.’2 As at mid-September 2021 there appeared to be broad agreement to the proposals from Unison, surely a rare event for an NHS reform brought in by a Conservative government. Unison commented that the bill was an: ‘… opportunity to drive out the principles of privatisation, fragmentation and marketisation from the laws that underpin our National Health Service.’3 The King’s Fund describe ICS as operating at three levels: ●● ●● ●●

systems, areas of 1 to 3 million people, setting strategic direction and delivering economies of scale; places, areas of 250,000 to 500,000 people, bringing primary care networks together with broader services, such as hospitals and local authorities; and neighbourhoods, areas of 30–50,000 people, served by groups of GP practices and community services.

At the time of writing, the Health and Care Bill is awaiting Third Reading in the House of Commons. Two new statutory bodies are to be created: Integrated Care Boards (‘ICBs’) and Integrated Care Partnerships (‘ICPs’). CCGs will be abolished and ICBs will take on their role with the addition of some of NHS England’s commissioning duties and area planning duties. The role of NHS England in establishing Integrated Care Boards and setting their constitution suggests that there may be more central influence than was intended under the Health and Social Care Act 2012.4 ICPs would involve ‘[a]n integrated care board and each responsible local authority whose area coincides with or falls wholly or partly within the board’s area’.5

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Access to Healthcare – Funding 8.5 ICPs will include local authorities and perhaps other related organisations such as public health bodies, housing or social care providers. The ICP will draw up a strategy for the health, public health and social care needs of an area, and the ICB and local authorities will have to have regard to that strategy.6 There are provisions to enhance information sharing and reduce the role of commissioning and competition. Finally, there will be changes at provider level, for example moving from activity-based payments to block payments and reducing the autonomy of Foundation Trusts (a change intended to assist with integration). The notes to the Health and Social Care Bill state that ‘there may not be any national tariffs’ and that NHS England will consult on a new payment scheme. Clearly much of the detail is still being developed. The NHS in Wales is devolved and is the responsibility of the Welsh Government. Following a reorganisation from 1 October 2009, seven Local Health Boards (‘LHBs’) plan, secure and deliver healthcare services in Wales.7 They are responsible for delivering healthcare services within a particular geographical area – a crucial difference from England, which retains, at least at the date of writing, an ‘internal market’ with a purchaser-provider split.8 There are three national trusts: the Welsh ambulance service; Velindre NHS Trust (offering specialist services); and Public Health Wales. 1

NHS Long Term Plan, January 2019; Integration and Innovation: Working together to improve Health and Social Care for all, DHSC, February 2021; Explanatory Notes to Health and Care Bill, 6 July 2021; DHSSC, Integration and Innovation: Working Together to Improve Health and Social Care for All (February 2021), see bit.ly/Improve-HSC; King’s Fund, Integrated care systems explained: making sense of systems, places and neighbourhoods (May 2021): www.kingsfund.org.uk/publications/integrated-care-systems-explained. 2 King’s Fund: see n1 above. 3 Unison (15 September 2021): see www.unison.org.uk/blogs/2021/09/blog-why-the-healthand-care-bill-is-so-important/. Unison also raised concerns about greater powers for the Secretary of State and the possible role of private companies. 4 See the Health and Care Bill, clauses 13 and 14. 5 Health and Care Bill, clause 21. 6 Health and Care Bill, clause 21(6). 7 See Local Health Boards (Establishment and Dissolution) (Wales) Order 2009 (SI 2009/778 W66). Note the passing to LHBs of certain functions of the Welsh Ministers under reg 4 of Local Health Boards (Directed Functions) (Wales) Regulations 2009 (SI 2009/1511 W147). 8 See NHS Funding and Expenditure, House of Commons Library, 17 January 2019. For a detailed review of the layers of responsibilities of statutory bodies in NHS Wales see R (on the application of Dyer) v The Welsh Ministers [2015] EWHC 3712 (Admin). See also www. wales.nhs.uk/governance-emanual/home.

C  STATUTORY DUTIES TO PROVIDE HEALTHCARE IN ENGLAND The Secretary of State 8.5 The Secretary of State is not under a duty to provide healthcare, but to ‘continue the promotion in England of a comprehensive health service’.1 To that end, the Secretary of State must exercise the functions conferred by NHSA 2006 to secure that services are provided in accordance with that Act. The Secretary of State is under further duties relating to how the system is organised, such as to ‘secure continuous improvement in the quality of services’ and to ‘have regard to’ the NHS Constitution and the need to reduce inequalities in the 325

8.5  Access to Healthcare – Funding benefits obtained from the NHS.2 The Secretary of State (like NHS England and CCGs) is given a general power to do anything calculated to facilitate the discharge of any function conferred by the NHSA 2006.3 1 NHSA 2006, s 1(1). Lord Wilson called this a target duty in R (A) v. Secretary of State for Health [2017] 1 WLR 2492. In R (on the application of Dyer) v The Welsh Ministers [2015] EWHC 3712 (Admin), Hickinbottom J called the similar wording in the Welsh legislation ‘a paradigm general or “political” duty’ (para 14). For Wales: see the National Health Service (Wales) Act 2006. This contains different obligations from the NHSA 2006. 2 NHSA 2006, ss 1A–1C. 3 NHSA 2006, s 2.

NHS England and clinical commissioning groups 8.6 The duties and powers to ‘arrange’ services are held by NHS England and the CCGs. NHS England has the ‘function’ of arranging for the provision of services and ‘securing’ that CCGs provide services in accordance with the NHSA 2006.1 NHSA 2006 provides a limited number of services in respect of which NHS England may be required ‘to meet all reasonable requirements’ and allows other services to be added by way of secondary legislation.2 Duties have been imposed on NHS England in respect of service personnel and their families, serving prisoners and about 140 rare and very rare conditions.3 In addition, there is a direct statutory duty on NHS England to provide various secure psychiatric services.4 The general approach to deciding what services NHS England provides is set out in Commissioning Policy: Ethical Framework for priority setting and resource allocation (2013). This states that NHS England must ‘meet all reasonable requirements for healthcare, subject to the duty to live within its allocated resources’. As general principles the NHS should consider ‘all options for investments’ and if a treatment is to be made available it must be made available to all patients in a particular cohort ‘unless it is possible to differentiate between groups of patients on clinical grounds’. Overall, treatments should be assessed on the ‘principles of clinical effectiveness, safety [and] cost-effectiveness and then prioritised in a way which supports consistent and affordable decision-making’. CCGs have the ‘function’ of arranging for the provision of services in accordance with NHSA 2006.5 CCGs are under a statutory duty to arrange services: ‘A clinical commissioning group must arrange for the provision of the following to such extent as it considers necessary to meet the reasonable requirements of the persons for whom it has responsibility.’6 Those services include hospital accommodation and medical, dental, ophthalmic, nursing and ambulance services. This is not a duty to make provision for any individual. This is also not a duty to make all possible provision which any individual or group might want or even from which it might benefit. Instead it is a duty ‘limited to providing the services identified to the extent that he considers that they are necessary to meet all reasonable requirements’.7 As set out below there are particular duties to fund certain NICE-approved treatments and to make rational decisions about other treatments.8 Where someone is entitled to treatment there are specific regulations about waiting times.9 326

Access to Healthcare – Funding 8.7 As it is currently drafted the Health and Care Bill 2021 puts similar obligations to provide health care on Integrated Care Boards. NHS England requires the use of standard documentation when commissioning services. The related Technical Guidance produced by NHS England mandates that: ‘… the NHS Standard Contract must be used by CCGs and by NHS England where they wish to contract for NHS-funded healthcare services (including acute, ambulance, patient transport, continuing healthcare services, community-based, high-secure, mental health and learning disability services)’.10 The status of this document depends on the contracting parties. By s 9 NHSA 2006 arrangements for the supply of goods and services between one ‘health service body’ and another are ‘NHS contracts’ and specifically provided not to give rise to contractual rights and liabilities (although the Technical Guidance says they should be treated with the same ‘rigour and seriousness’11). The agreement is legally binding when made with foundation trusts, private bodies, voluntary bodies and local authorities. 1 NHSA 2006, s 1H(3). 2 NHSA 2006, s 3B. 3 National Health Service Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 (SI 2012/2996). 4 NHSA 2006, s 4. 5 NHSA 2006, s 1. 6 NHSA 2006, s 3(1). 7 See Lord Woolf MR in R v North East Devon Health Authority ex p Coughlan [2001] QB 213 at 230, para 23 for an often-cited discussion of the predecessor obligations. 8 See para 8.16 below. 9 Part 9 of the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 (SI 2012/2996), the obligation being to ‘make arrangements to ensure’ that not less than 92% of patients commence treatment within 18 weeks (reg 45). 10 NHS Standard Contract 2021/22 Technical Guidance (152 pages) para 7.2. See section 9 for the shorter form contract. 11 Technical Guidance (n10) para 16.1.

Reasonable requirements in England and Wales 8.7 Public law challenges seeking to obtain the provision of particular healthcare are addressed below. A key preliminary to any such claim is the statutory obligation on the state to provide healthcare. While in some earlier legislation the duty ‘to provide’ was on the Secretary of State the content of that duty has long been to make provision to the extent ‘considered necessary’ to meet ‘reasonable requirements’. It was held by the Court of Appeal in Coughlan that the Secretary of State was ‘entitled to take into account the resources available to him and the demands on those resources’ when making decisions pursuant to that duty.1 On the basis of Coughlan it has been held that s 3 of the NHSA 20062 ‘did not impose a duty which an individual could directly enforce in relation to his asserted treatment needs’3 and that it is ‘a target public law duty … not an absolute duty to provide health services’.4

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8.7  Access to Healthcare – Funding The legislation in Wales is also based on meeting ‘reasonable requirements’. The interpretation of the National Health Service (Wales) Act 2006 and NHSA 2006 have drawn on each other. In R (on the application of Dyer) v The Welsh Ministers5 the court refused a claim under the Welsh legislation alleging a failure to provide sufficient secure accommodation in Wales for women with autism and learning difficulties (looking at the duty beyond the level of service provision for one patient). The court regarded the cohort proposed by the claimant (that is, those with a diagnosis of ASD and learning difficulties) as artificial and doubted that a decision could be made by looking at each individual group. Instead the court noted the complexity of the decisions to be made, explaining the reality of resources and ‘polycentric decisions’ as follows: ‘It is unrealistic to impose upon the relevant authority an obligation discretely to consider every possible group and subgroup of patients and potential [patients], no matter how narrowly defined, who may wish to use the services of NHS Wales; and to make a discrete decision as what their precise requirements will be and whether to prioritise their needs or otherwise favour them over others with different health requirements. The relevant decision-making process is therefore particularly sophisticated. It can sensibly be done – and, perhaps, only sensibly done – in the context of a scheme whereby the requirements of all patients and potential patients are taken into account somewhere along the line’.6 1

Per Lord Woolf MR in R v North East Devon Health Authority ex p Coughlan [2001] QB 213 at para 26 and see Chapter 7: Access to Healthcare – Choice, para 7.8. 2 For Wales, see s 3(1) of the National Health Service (Wales) Act. 3 R (on the application of D) v Haringey LBC and Haringey PCT [2005] EWHC 2235, [2005] All ER (D) 256 (Oct), para 104. 4 R (on the application of JF) v NHS Sheffield CCG [2014] EWHC 1345, [2014] All ER (D) 38 (May) at para 43. 5 [2015] EWHC 3712 (Admin), [2016] All ER (D) 25 (Jan), see in particular paras 17 and 105. 6 Ibid, para 111. See also para 8.35 below and Chapter 7: Access to Healthcare – Choice, para 7.22.

Which CCG is responsible? 8.8 The obligation on CCGs to arrange for services applies to ‘persons for whom it has responsibility’.1 The key responsibility on a CCG is for ‘persons who are provided with primary medical services by a member of the group’,2 that is for people registered with a GP who is a member of that CCG. Where someone is not registered with any GP they are the responsibility of the CCG in the area in which they ‘usually reside’. Additionally, a CCG is responsible for the emergency care for everyone in their area. This apparently simple scheme contained in primary legislation is supplemented by the National Health Service Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012,3 which provide for a small number of circumstances in which responsibility is retained by an earlier CCG despite the patient being registered in a GP practice which is a member of another CCG. The most common circumstance is likely to be when one CCG – say CCG ‘A’ – commissions continuing healthcare which includes accommodation of defined types in the area of another CCG – say CCG ‘B’ – and the patient registers with a GP who is a member of CCG ‘B’.4 In general, responsibility for funding the continuing healthcare would then be retained 328

Access to Healthcare – Funding 8.9 by the commissioning CCG, that is, CCG ‘A’. This is a standard provision to prevent any unscrupulous practice of commissioning care in other areas (in the hope that responsibility to pay would also transfer to those areas) or to allow for the greater availability of appropriate placements in some areas and the risk of those areas becoming responsible for a disproportionate number of high cost placements. Any such system of retained responsibility needs to be balanced against the possibility of CCGs remaining responsible for large numbers of patients who moved away years ago. The concept underlying the NHS system for determining responsibility is therefore straightforward. It largely avoids the concept of ‘ordinary residence’, which has been so difficult in local authority responsibility for care packages (particularly because of statutory disregards which operate to provide that ordinary residence can remain with a local authority long after the person is no longer physically present there). However while the system is based on GP registration there are some specific rules and exceptions which are complex and need to be approached with care. There is also statutory guidance which has been controversial and several times amended, most recently in 2020. That guidance is called ‘Who Pays?’5 which provides that: ●● ●● ●●

necessary assessment, care or treatment must not be delayed while disputes are resolved’;6 a CCG must pay for patients who are temporarily registered with a member practice;7 the responsibility for commissioning and paying for care generally moves from one CCG to another when a patient moves and de-registers from a practice which is member of the first CCG.8

There is particular guidance relating to particular groups, for example, people of no fixed abode, people in bail hostels, ‘looked after children’, students, boarding school pupils, funded nursing care and continuing healthcare. 1 2 3 4

NHSA 2006, s 3(1). NHSA 2006, s 3(1A). SI 2012/2996 made under s 3(1)(B) of the NHSA 2006. Schedule 1 paras 2(b) and 3 of SI 2012/2996 note the various conditions including that the person has moved GP out of the area (or the placing CCG would anyway still be responsible), that the services include accommodation in a care home/independent hospital and that at least one planned service other than planned nursing care is also delivered. 5 NHS England, Who Pays? Determining Responsibility for Payments to Providers (August 2020) published under s 14Z7 and s 14Z8. Another common inter-area situation is the commissioning of after-care under s 117 of the Mental Health Act 1983 (‘MHA’) – also reformed in the August 2020 guidance. 6 Ibid, para 1.4. 7 Ibid, para 10.2. 8 Ibid, para 11.5.

8.9 Three of the more important areas subject to amended guidance are as follows:1 ●●

Where continuing care is arranged in another area the placing CCG remains responsible throughout the time the person requires continuing care, even if they more to another placement.2 However the receiving CCG becomes responsible for other NHS services.3 Note this applies to continuing care in a care home or independent hospital and not in the person’s own home or independent living placement4 nor if the only service is NHS Funded Nursing Care.5 329

8.9  Access to Healthcare – Funding ●●

●●

Where a person is detained under the MHA and becomes eligible for after-care under s 117 of the MHA, the responsible commissioner has, since April 2016, been the CCG in whose area the patient was ordinarily resident immediately prior to being detained.6 The guidance brings in additional rules – relying on s 14Z7 of the NHSA 2006 – about which CCG is responsible for paying for s 117 after-care. These apply from September 2020, supposedly in order to avoid incentives to avoid commissioning local capacity. There is now a compulsory dispute resolution process where CCGs in England disagree about commissioning responsibility.7 This ‘strongly recommends’ not taking external legal advice and creates a three-step process ending in referral to NHS England.8

The above system will necessarily be affected by the creation of Integrated Care Boards (ICB). As at the time of writing the Health and Social Care Bill is hedging its bets, providing that: ‘NHS England must from time to time publish rules for determining the group of people for whom each integrated care board has core responsibility’,9 but that the Secretary of State may replace that section with another providing that an ICB will have ‘core responsibility … to the people who usually reside in its area.’10 In Wales, responsibility is for ‘the persons usually resident’ in the area. An LHB continues to be responsible for certain categories of looked after children and people who require accommodation to meet continuing healthcare needs ‘who have been usually resident’ in the LHB’s area but have been given accommodation in the area of another LHB or of a CCG.11 1 NHS England, Who Pays? Determining Responsibility for Payments to Providers (August 2020). In some places this reflects a substantial change and in others clarification. It is not clear how inconsistencies between this guidance and the statutory instrument would be resolved, depending perhaps on whether they were express or implied. 2 Ibid, para 14.8. 3 Ibid, para 14.9. 4 Ibid, para 14.16. 5 Ibid, para 14.17. 6 Ibid, para 18.3. 7 Ibid, para 7.3. 8 Ibid, Appendix 1. 9 Clause 15. 10 Ibid. 11 Local Health Boards (Directed Functions) (Wales) Regulations 2009 (SI 2009/1511), regs 2(2) and 3 and Responsible Body Guidance for the NHS in Wales.

Services for people from other countries and other parts of the UK 8.10 The obligation in NHSA 2006 is to provide a health service for the ‘people of England’ and, in the National Health Service (Wales) Act, for the ‘people of Wales’.1 The discussion about charging which follows is about the arrangements for England, some of which will apply in Wales. Some treatment is provided free to anyone present in the country including accident and emergency services and treatment for some infectious diseases. Some groups are treated free, including those detained under the MHA.2 330

Access to Healthcare – Funding 8.12 Otherwise the NHS in England is a residency-based healthcare provider and hospital care is provided to those who are ‘ordinarily resident’;3 that is, those whose residence is lawful for a settled purpose whether of short or long duration. The question of entitlement to use the NHS obviously arises for people from other countries (which now includes people from EU countries who did not, or could not, obtain residency under the EU settlement scheme). To the surprise of many, that question of entitlement to use the NHS also arises for UK nationals who move abroad and for people from other parts of the UK. NHSA 2006, s 1(1) and National Health Service (Wales) Act 2006, s 1(1). See para 8.5 above. See also www.wales.nhs.uk/governance-emanual/home. 2 Note that this also includes some people subject to detention under certain provisions of the MCA, reg 18 of SI 2015/238. 3 See s 39 of the Immigration Act 2014 which requires non-EEA nationals to have indefinite leave to remain to be ordinarily resident. 1

Charges for healthcare 8.11 The NHS charges for prescriptions and dental care (subject to exemptions). Otherwise it is free at the point of use. This is embodied in NHSA 2006, s 1(4), subject only to express statutory powers to charge. Section 175(1) of the NHSA 2006 creates a power to make regulations establishing charges for ‘persons not ordinarily resident in Great Britain’, called overseas visitors. The National Health Service (Charges to Overseas Visitors) Regulations 2015 (‘the Charging Regulations’)1 contain an obligation on some NHS bodies – primarily hospitals – to charge overseas visitors who are not entitled to free treatment (generally at the rate of 150% of the standard NHS tariff).2 The regulations use a double negative, providing that people are to be charged unless the charging body determines ‘that the case is not one in which these Regulations provide for no charge to be made’.3 There are numerous exemptions from the charging rules to the extent that it is probably better to think of the system as a set of rules about entitlement rather than a general principle subject to exceptions. For example, the exceptions include visitors for six months or more who have paid the immigration health surcharge and, despite the case which follows, some ‘failed asylum seekers’.4 1 National Health Service (Charges to Overseas Visitors) Regulations 2015 (SI 2015/238) and the amendment regulations, SI 2017/756. The Welsh regulations are the National Health Service (Charges to Overseas Visitors) Regulations 1989, subject to many amendments. 2 Regulations 3(1) and 7(3) of National Health Service (Charges to Overseas Visitors) Regulations 2015 (SI 2015/238). 3 Ibid. 4 See Department of Health & Social Care Guidance on implementing the overseas visitor hospital charging regulations (2017).

8.12 If a charge does apply there is a duty to charge in advance unless imposing those charges would delay ‘immediately necessary’ or ‘urgent’ treatment. There is little difficulty with the former definition, which includes ante-natal services and life-saving care but ‘urgent’ is more difficult, being defined to include treatment which should not wait until the recipient can reasonably be expected to leave the UK. In R (YA) v Secretary of State for Health1 the basic principle of charging overseas residents was considered in a case concerning ‘failed asylum seekers’. The Court of Appeal upheld the principle, subject to (i) providers having a discretion not to charge and (ii) the court’s determination that the guidance in 331

8.12  Access to Healthcare – Funding force then was unlawfully unclear about the proper approach to people who remained in the country unlawfully. The court gave an important clarification on what NHSA 2006 s.1 – the touchstone for these issues – means for access to the NHS: ‘Note that it is the people of England, not the people in England, which suggests that the beneficiaries of this free health service are to be those with some link to England so as to be part and parcel of the fabric of the place. It connotes a legitimate connection with the country. The exclusion from this free service of non-residents and the right conferred by section 175 to charge such persons as are not ordinarily resident reinforces this notion of segregation between them and us. This strongly suggests that, as a rule, the benefits were not intended by Parliament to be bestowed on those who ought not to be here.’2 1 2

R (YA) v Secretary of State for Health [2009] EWCA Civ 225, [2010] 1 WLR 279. Ibid, para 55 per Ward LJ (emphasis in original judgment).

8.13 Charging for overseas visitors has been in place since 1982.1 The current Charging Regulations took effect in April 2015. In December 2015 the government launched a consultation about changes to the regulations. There was no proposal to require advance payment or to record someone’s status as an overseas visitor against their NHS number. However these were amongst the changes introduced by amendment regulations with effect from October 2017. The amendment regulations were challenged by judicial review.2 The court held that there was no free-standing obligation to consult on the amendments and that the Secretary of State did have due regard to the Public Sector Equality Duty but that the application between people who are resident and people who are not is difficult: ‘It may be more realistic to accept that the position of resident and nonresident persons in the United Kingdom is different and the extent to which a person has a sufficient connection to the United Kingdom to justify the provision of free health care differs between those groups.’3 Finally the court held that the Secretary of State did comply with the statutory duty in NHSA 2006 s.1C to have regard to the need to reduce inequalities between people in England in relation to the benefits they can obtain from the NHS. This was a process duty and not a duty to achieve an outcome. 1 There were earlier challenges to the charging regulations; for example, R (Cushnie) v Secretary of State for Health [2014] EWHC 3626, [2015] PTSR 384, a challenge to the Charging Regulations 2011. That case found prima facie indirect discrimination on grounds of disability in the exclusion of certain failed asylum-seekers, but concluded it was justified under the applicable test (para 92). It found a breach of s 149 of the Equality Act 2010. A challenge to the Charging Regulations as breaching Arts 8 and 14 of the ECHR failed in R (SHU) v Secretary of State for Health and Social Care [2020] 4 WLR 124. 2 R (MP) v Secretary of State for Health (2019) 167 BMLR 102. 3 Ibid, per Lewis J at para 107. The consultation point was appealed and the judgment was upheld by the Court of Appeal, [2021] PTSR 1122.

Access to the NHS 8.14 In R (on the application of A) v Secretary of State for Health1 the same principle about the nature of the NHS was applied to residents from the constituent countries of the UK as they move within it. The Supreme Court held that there was no duty on the Secretary of State for Health (who is only 332

Access to Healthcare – Funding 8.16 responsible for the NHS in England) to provide abortion services in England to women from Northern Ireland: ‘Parliament’s scheme is that separate authorities in each of the four countries united within the kingdom should provide free health services to those usually resident there. The Secretary of State was entitled to make a decision in line with this scheme for local decision-making and in accordance with the target reflective of it which was imposed on him by statute … [Further] The Secretary of State was entitled to afford respect to the democratic decision of the people of Northern Ireland; was entitled to have in mind the undeniable ability of Northern Irish women lawfully to travel to England and to purchase private abortion services there …’2 Lord Wilson, giving the majority judgment, endorsed the conclusion in YA3 that the NHS is for people who are ‘part and parcel of the place’ but added ‘more simply … it is [for] … the people who live in England’.4 This seems to leave out of account the question of the legal legitimacy of that residence. 1 2 3 4

[2017] 1 WLR 2492. Ibid, Lord Wilson JSC (with whom Lord Reed and Lord Hughes JJSC agreed) at para 20. R (YA) v Secretary of State for Health [2009] EWCA Civ 225, [2010] 1 WLR 279. n1 above at para 10.

8.15 The question was revisited in another case with the same title R (A) v Secretary of State for Health.1 This case concerned priority for donor organs – a particularly scarce resource as supply is not affected by funding levels. By the NHS Blood and Transplant (England) Directions 2005 candidates for transplant are divided into two groups. Group 1 is people ‘ordinarily resident’ in the UK. Group 2 is anyone not in group 1. The directions provide that no person in group 2 can receive an organ for which there is a clinically suitable person in group 1. The Divisional Court held that the Directions are not ultra vires the power in the NHSA to give directions to NHS Blood and Transplant. The court also reviewed Lord Wilson’s comment that the NHS was for ‘people who live in England’, holding that this was not part of the ratio of the case since any woman from Northern Ireland could reside lawfully in England. Conversely Lord Wilson’s approval of Ward LJ’s judgment in the YA case2 was express and it should be taken as correct. 1 R (A) v Secretary of State for Health [2018] 4 WLR 2. 2 See paras 8.12 and 8.14 above.

The NHS Constitution 8.16 Most NHS bodies are under a statutory duty in relation to the NHS Constitution. In the case of the Secretary of State this is a duty to have ‘regard to’ the NHS Constitution.1 For NHS England and CCGs it is a duty to ‘act with a view to securing that health services are provided in a way which promotes the NHS Constitution’.2 The NHS Constitution for England is a simple straightforward 15-page document3 which provides accessible statements about NHS treatment. It is a shame that it has to be accompanied by a very lengthy ‘explanatory’ document, the Handbook to the NHS Constitution.4 The NHS Constitution includes some very general statements such as ‘Access to NHS services is based on clinical need, not an individual’s ability to pay’ and 333

8.16  Access to Healthcare – Funding ‘[the NHS] is committed to providing the most effective, fair and sustainable use of finite resources’. There is also a ‘right’ to professional care in a clean environment.5 However two ‘rights’ stand out:6 ●● ●●

‘You have the right to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you.’ ‘You have the right to expect local decisions on funding of other drugs and treatments to be made rationally following a proper consideration of the evidence. If the local NHS decides not to fund a drug or treatment you and your doctor feel would be right for you, they will explain that decision to you.’

This appears to be an unqualified right to drugs and treatments recommended7 by NICE and to personalised decision-making for non-approved drugs and treatments. The extent of these obligations was part of the reasoning in R (on the application of Rose) v Thanet CCG, considered below.8 1 NHSA 2006, s 1B. 2 NHSA 2006, ss 13C and 14P. 3 Current version 1 January 2021: see http://bit.ly/29YEef0. The 2021 amendments added references to rights to treatment in the EU to those entitled under the Withdrawal Agreement and Trade and Co-operation Agreement. 4 See www.gov.uk at bit.ly/NHS-Handbook-Update. 5 While hard for patients to enforce, there are related obligations on providers, for example under the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014. 6 NHS Constitution, p 7. 7 Note this term has a specific meaning set out below at para 8.17 below. 8 [2014] EWHC 1182 (Admin), (2014) 138 BMLR 101; see para 8.17 below.

The role of NICE in approving drugs and other treatments 8.17 The National Institute for Health and Care Excellence (‘NICE’) is a non-departmental public body established in 1999 and now provided for by Pt 8 of the Health and Social Care Act 2012 (‘HSCA 2012’). Its role is, first, to set standards in NHS services, public health and social care1 and, secondly, to make formal recommendations about the provision of certain types of products and services. It is necessary to distinguish between those two roles, noting that both – confusingly – can involve NICE ‘recommendations’. The role in setting ‘quality standards’ includes ‘giving advice or guidance, providing information or making recommendations’.2 CCGs are not required to comply with NICE information or guidance produced under this provision of the NICE Regulations although such recommendations are relevant considerations in CCG decision making: see R (on the application of Rose) v Thanet CCG (‘Thanet’).3 Indeed, in Thanet the court concluded that it was not in practice possible – at least in that case – to depart from such a recommendation based on a differing view of the scientific evidence: ‘… in the circumstances of this case the CCG has failed to advance clear, lawful reasons for departing from the relevant NICE recommendation. The effect of my ruling is that in reality the CCG could not lawfully disagree with the medical or scientific rationale for NICE’s recommendation in relation to oocyte cryopreservation, but I am not ruling out the possibility that other reasons of a different nature could not lawfully be relied on. 334

Access to Healthcare – Funding 8.17 I should also make clear that my conclusion (on this alternative basis) applies only to this particular NICE recommendation.’4 ‘Recommendations’ concerning a ‘health technology’ and a ‘highly specialised health technology’ are treated differently from those general quality standards.5 Health technologies include medicines, medical devices, diagnostic techniques and surgical procedures. Highly specialised health technologies mean health technologies for rare and very rare conditions. A NICE technology appraisal recommendation must specify a period (usually three months) within which NHS England and CCGs shall provide funding to make the technology available to patients.6 Those bodies ‘must comply’ with the recommendation.7 The same applies to highly specialised health technology recommendations.8 This would appear to be an independent statutory basis for the treatment ‘rights’ referred to in the NHS Constitution. NICE guidance is entirely separate from the approval of drugs as safe and effective by the European Medicines Agency and the Medicines and Healthcare Products Regulatory Agency. NICE guidelines concern whether a licensed drug should be available on the NHS, the conditions for which it can be used and the circumstances in which it should be used. NICE considers a range of factors with particular reference to the Quality Adjusted Life Year (‘QALY’). One ‘QALY’ is equal to one year of life in perfect health and the calculation of the cost of a treatment per QALY takes into account the number of years of life weighted for quality of life. Generally interventions costing less than £20,000 per QALY are considered cost-effective and those costing £20,000 to £30,000 might be considered cost effective.9 NICE has used the QALY for 21 years and, surprisingly, the starting point cost figures have not changed in that time although ‘modifiers’ can be applied which may raise the sum.10 A range of factors might be taken into account in deciding which drugs to fund; for example, the value of extending end of life, the value of ameliorating severe disease or the cost of producing drugs for rare conditions. In 2017 changes were made to the system relating to the cost per QALY for very rare diseases, a fast track process and the imposition of a ‘budget impact test’.11 At the date of writing NICE is consulting on further changes including adding a ‘modifier’ for severe disease to give additional weight to the health benefits of treating severe disease.12 1

HSCA 2012, ss 234 and 237. Its self-described guiding principles are here: www.nice.org.uk/ about/who-we-are/our-principles. 2 Regulation 5 of National Institute for Health and Care Excellence (Constitution and Functions) and the Health and Social Care Information Centre (Functions) Regulations 2013, (SI 2013/259) (the ‘NICE Regulations’). 3 [2014] EWHC 1182 (Admin), (2014) 138 BMLR 101, para 22. 4 Ibid, para 107. 5 Defined in reg 2 of the NICE Regulations. See R (on the application of Cotter) v NICE [2020] EWCA Civ 1037, [2020] Med LR 572 for a discussion of criteria applicable to deciding which NICE assessment applies. 6 The system is described here: NICE Technology Guidance: see bit.ly/NICE-tech. 7 Regulation 7(6) of the NICE Regulations. See also reg 34(2) of SI 2012/2996 requiring CCGs to comply with such recommendations. 8 Regulation 8(6) of the NICE Regulations. 9 The thresholds applied are often subject to trenchant criticism from affected patients and by manufacturers of products: see, for example, the attack on the draft Guidance from NICE that it did not believe Johnson & Johnson’s Imbruvica used to treat chronic lymphocytic leukaemia (‘CLL’) was a cost-effective use of NHS resources (nice.org.uk at http://bit. ly/2agH5zJ). Johnson & Johnson’s response stated that the decision ‘sits in stark contrast to the recommendations of 48 countries globally which have opted to fund or reimburse the

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8.17  Access to Healthcare – Funding medicine including 27 European countries,’ and prompted the comment: ‘It is inevitable that cancer drugs that are highly-priced will suffer when considered using the usual techniques employed by NICE. The £20–30,000 threshold for cost/QALY cannot take into account relatively modest increments in efficacy (and even less so increments in safety and quality of life) in conditions where life expectancy is limited. The sad aspect of this is, particularly in cancer where huge strides are underway, the British public will not reap the benefits unless they take part in clinical trials where the company provides free drug’ (PMlive.com at bit. ly/2agH9zw). 10 The main underlying guidance pre-2020 consultation is at NICE Guide to the processes of technology appraisal (September 2014): see bit.ly/NICE-tech-Sep-14. See commentary in Pharmaphorum, After two decades, NICE begins consultation on drug assessment methods (6 November 2020): see bit.ly/Pharamaphorum-6-Nov-20. 11 See NICE, Changes to NICE drug appraisals: what you need to know (4 April 2017): see bit. ly/NICE-4-Apr-17. 12 See NICE, Changes to provide faster, fairer access to new drugs and devices: see bit.ly/NICEchanges. See also NICE, NICE signals commitment to greater flexibility in its evaluation of promising new health technologies and making patient access fairer, https://bit.ly/NICE20-Jan-22.

Individual decision-making by NHS England and CCGs 8.18 The second key ‘right’ in the NHS Constitution is to a local decision on the funding of other treatments made following a rational process and supported by reasons, given effect by Pt 7 of the Responsibilities and Standing Rules Regulations.1 CCGs and NHS England must have general policies as to which healthcare interventions are to be made available. These policies must make available interventions contained in ‘technology appraisal recommendations’ and ‘highly specialised technology appraisal recommendations’. They must also include arrangements to determine Individual Funding Requests; that is, requests that a treatment is to be made available for a particular patient where there is no relevant NICE recommendation and the CCG’s general policy is not to fund that intervention.2 Regulation 34 of the Standing Rules Regulations provides: ‘(1)  A relevant body must have in place arrangements for making decisions and adopting policies on whether a particular health care intervention is to be made available for persons for whom the relevant body has responsibility. ‘(2) Arrangements under paragraph (1) must— (a) ensure that the relevant body complies with relevant NICE recommendations;3 and (b) include arrangements for the determination of any request for the funding of a health care intervention for a person, where there is no relevant NICE recommendation and the relevant body’s general policy is not to fund that intervention.’4 The NHS England IFR policy states that: ‘NHS England will only provide funding in response to an IFR, if it is satisfied that the case meets the following criteria: ●●

There is evidence that the patient presents with exceptional clinical circumstances, that is: [‘a different clinical condition when compared to the typical patient population’] [ or ‘the patient’s presentation is so unusual that they could not be considered to be part of a defined group of patients’] AND 336

Access to Healthcare – Funding 8.19 ●● ●●

There is a basis for considering that the requested treatment is likely to be clinically effective for this individual patient; AND It is considered that the requested treatment is likely to be a good use of NHS resources.’5

How IFR decisions have been considered in the courts is discussed below, for example in relation to human rights, the Equality Acts and proving ‘exceptionality’6. It seems that in practice there is a risk of the system itself becoming an administrative barrier to treatment. This risk can be seen in R (SB) v NHS England.7 NHS England operates a screening group which decides which applications should go before the IFR panel. In SB the panel rejected the application on 14 December 2016 (itself the third decision) and the screening group refused to refer the application for reconsideration on 20 February 2017. The court found this ‘rather difficult to understand’ given that the IFR panel had itself found the patient ‘exceptional’ on the December consideration. The court also pointed out that the requirement to show ‘clinical benefit’ by reference to a pattern of elevating readings could itself put the patient at risk: ‘By the time any application based on a series of sustained longer-term readings above 600µmol/L could be put to an IFR panel, it could well be too late. Given that the purpose of the application is to avoid a child sustaining avoidable neurological damage by lowering the phenylalanine levels in the blood to consistently within acceptable limits, it can hardly be appropriate to expect the child to be exposed to sufficiently high levels for long enough to potentially sustain severe irreversible brain damage before deciding that a case of clinical benefit is made out.’8 1 National Health Service Commissioning Board (Responsibilities and Standing Rules) Regulations 2012 (SI 2012/2996). 2 In the 10 months from 1 April 2015 to 31 January 2016 there were 921 IFRs made to NHS England of which 74 were allowed. 3 See para 8.17 above on the nature of different sorts of NICE recommendations. 4 Regulation 34 of SI 2012/2996. 5 NHS, Commissioning Policy: Individual Funding Requests page 6: see bit.ly/3Ik7GXR. 6 And see paras Chapter 7: Access to Healthcare – Choice, paras 7.20–7.36. 7 [2018] PTSR 576. 8 Ibid, Andrews J at para 81.

Local Authorities, social care and public health 8.19 There are two areas where the interface between local authority and NHS services is particularly visible: first, in determining the borderline between health care and social care and, secondly, in public health. There has been considerable dispute about whether care is classified as ‘health care’ or ‘social care’. Where someone has complex and continuing healthcare needs they may receive a package of care and healthcare arranged solely by the NHS. This is called ‘continuing healthcare’ and arises where the person has a ‘primary health need’. It is provided by clinical commissioning groups under the NHSA 2006 and is free of charge. Social care is provided by local authorities under the Care Act 2014 subject to a duty to charge the recipient. There is a half-way house, called Funded Nursing Care, where the nursing element only is paid by the CCG.1 The point has great financial significance, particularly for people with dementia and their families, as the cost of care can quickly consume all of a person’s 337

8.19  Access to Healthcare – Funding assets. For many years governments have said that the funding of social care in England will be reformed and the NHS Mandate for 2021/22 states that ‘[t]he Government will also be bringing forward a long-term solution for adult social care.’ In September 2021 a proposal was made to use the Health and Social Care levy (a new tax closely following National Insurance) to introduce an £86,000 cap on lifetime care costs. The cap will only apply to personal care costs. ‘Hotel costs’ will therefore be excluded. The upper capital limit on accessing local authority funding for care will also be increased from 2023 from £23,250 to £100,000. There is to be a White Paper on workforce reform. 1 See Health and Social Care Act 2001, s 49; Care Act 2014, s 22 and, for example, R v North East Devon Health Authority ex p Coughlan [2001] QB 213; R (Grogan) v Bexley NHS Care Trust [2006] EWHC 44, [2006] LGR 491; and Forge Care Homes v Cardiff and Vale UHB [2016] EWCA Civ 26.

8.20 The system of NHS continuing care is contained in the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations and expanded upon the National Framework for NHS continuing healthcare. ‘NHS Continuing Healthcare’ means a package of care arranged and funded solely by the health service in England for a person aged 18 or over to meet physical or mental health needs which have arisen as a result of disability, accident or illness.1 The Regulations require that CCGs must carry out an assessment of eligibility of a person who may need such care and that the assessment is carried out by a multi-disciplinary team using the Decision Support Tool of March 2018, to decide if the person has a ‘primary health need’. In order to decide this, the CCG must consider if any nursing services are ‘more than incidental or ancillary to the provision of accommodation’ or of a ‘nature’ beyond those provided by a social services authority.2 The CCG is required to have regard to the National Framework. The assessment set out in the Decision Support Tool involves categorising the person’s level of need, in various domains ranging between low and priority. The National Framework then calls for a decision, based on the nature, intensity, complexity and predictability of those needs, as to whether most of the care is focussed on addressing or preventing health needs. If the person is found to have a ‘primary health need’ then all their care, including social care, is provided by the NHS and hence without charge. Indeed in Whapples3 the Secretary of State conceded that a CCG had the power to provide accommodation if a patient had a need for particular accommodation. The Court of Appeal doubted that concession and rejected the claim for a recipient of continuing healthcare to move to a new flat, provided by the NHS. 1 2 3

Regulation 20(1) National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 (SI 2012/2996). Regulation 21(7), National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 (SI 2012/2996). R (Whapples) v Birmingham Crosscity CCG [2015] PTSR 1398.

8.21 The Court of Appeal has found that the question of whether needs are primarily health care needs ‘was, or was likely to be, intrinsically beyond the normal capacity of the court in judicial review proceedings’.1 As would then be expected, there are relatively few challenges which reach a final hearing. However, the court will require that the process used by the CCG follows the regulations and guidance2 and has commented on the borderline between health and social care on the basis of the skills required of staff to work with the patient.3 338

Access to Healthcare – Funding 8.22 1 2 3

R (St Helens Borough Council) v Manchester Primary Care Trust [2009] PTSR 105 at para 25, CA and [2009] EWCA Civ 53 at para 16. R (on the application of Lily Dennison) v Bradford Districts CCG [2014] EWHC 2552, a case which just survived the submission that the Ombudsman was an alternative remedy. See also R (JP) v Croydon CCG [2020] Med LR 426. R (Juttla) v Hertfordshire Valleys Clinical Commissioning Group [2018] EWHC 267 (Admin) at para 11; and R (on the application of T) v London Borough of Haringey [2005] EWHC 2235 (Admin) at para 65.

8.22 So far as public health is concerned each local authority ‘must take such steps as it considers appropriate for improving the health of people in its area’.1 This target duty operates concurrently to the public health duty on the Secretary of State. Regulations define the role of local authorities as including the provision of health checks and health visitors, sexual health services and public health advice services, and include a limited charging power.2 While local authorities are responsible for sexual health services, NHS England is responsible for specialist services, including HIV treatment. This division of responsibility led to the PrEP litigation3 in which NHS England argued that it had no legal power to commission an anti-retroviral drug to be given on a prophylactic basis to people at risk of contracting HIV so as to reduce their chance of infection. It was accepted that the drug was effective to stop a significant number of people from contracting HIV and that this was much cheaper than treating them for HIV if they contracted it (a cost which obviously falls on the NHS): ‘At its core this judicial review is about the allocation of budgetary responsibility in the health field … one governmental body says it has no power to provide the service and the local authorities say that they have no money.’4 The legal difficulty arose from the drafting of s 1H of the NHSA 2006 which provides that NHS England is under the same duty as the Secretary of State, concurrently with the Secretary of State, ‘to promote a comprehensive health service’ including in relation to ‘prevention, diagnosis and treatment’ of illness ‘except in relation to the part of the health service’ provided in pursuance of the public health functions of the Secretary of State or local authorities. The Court of Appeal found the interpretation of this understandably difficult. The court considered that s 1H was trying to exclude NHS England for any responsibility for public health. Further, the distinction between the role of NHS England and local authorities could not be based on the distinction between prevention and cure since both of them could carry out both roles. The court used the detailed statutory instruments setting out the roles of NHS England and the public health roles of local authorities to fill out its interpretation of the statute and found that NHS England did have the power to commission PrEP.5 1 NHSA 2006 s 2B. 2 Local Authorities (Public Health Functions and Entry to Premises by Local Healthwatch Representatives) Regulations 2013 (SI 2013/351). 3 R (National AIDS Trust) v National Health Service Commissioning Board (NHS England) [2016] PTSR 1093; and on appeal [2017] 1 WLR 1477. 4 [2016] PTSR 1093 at para 4, per Green J. 5 National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 (SI 2012/2996); Local Authorities (Public Health Functions and Entry to Premises by Local Healthwatch Representatives) Regulations 2013 (SI 2013/351).

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8.23  Access to Healthcare – Funding

D  COURT DECISIONS ABOUT ACCESS TO HEALTHCARE Will a court require doctors or NHS bodies to provide treatment? 8.23 In Re J (a minor) (child in care: medical treatment)1 Waite J had made an interim order requiring that a health authority ‘do provide … intensive therapeutic measures, including artificial ventilation’ to an 11-month-old child with limited life expectancy and microcephaly, cerebral palsy, cortical blindness and severe epilepsy despite the view of the treating team that this treatment was medically inappropriate. Lord Donaldson defined the question as whether the court should ever force a medical practitioner to adopt a course of treatment, which the practitioner considered contra-indicated as not being in the best interests of the patient. His answer was: ‘I have to say that I cannot at present conceive of any circumstances in which this would be other than an abuse of power as directly or indirectly requiring the practitioner to act contrary to the fundamental duty which he owes to his patient. This … is to treat the patient in accordance with his own best clinical judgment, notwithstanding that other practitioners who are not called upon to treat the patient may have formed a quite different judgment or that the court, acting on expert evidence, may disagree with him.’2 The order was also unlawful for a reason: ‘… only slightly less fundamental … [that it] does not adequately take account of the sad fact of life that health authorities may on occasion find that they have too few resources, either human or material or both, to treat all the patients whom they would like to treat in the way in which they would like to treat them. It is then their duty to make choices.’3 These two principles remain.4 In R v Cambridge Health Authority ex p B (No 1),5 a case widely followed in the media at the time, the parents of a nineyear-old girl sought a third course of chemotherapy. The Health Authority refused funding on the basis that the treatment was experimental and not an appropriate use of resources. The judge ordered that treatment be provided. Allowing the appeal, the Court of Appeal held that: ‘Were we to express opinions as to the likelihood of the effectiveness of medical treatment, or as to the merits of medical judgment, then we should be straying far from the sphere which under our constitution is accorded to us. We have one function only, which is to rule upon the lawfulness of decisions. That is a function to which we should strictly confine ourselves.’6 Finally, there is the Court of Appeal decision in R (on the application of Burke) v General Medical Council,7 a challenge by way of judicial review to good practice guidance from the GMC about withholding and withdrawing treatment. The Court of Appeal ‘endorsed the following simple propositions advanced by the GMC’: ‘If, however, [the patient] refuses all of the treatment options offered to him and instead informs the doctor that he wants a form of treatment which the doctor has not offered him, the doctor will, no doubt, discuss that form of treatment with him … but if the doctor concludes that this treatment is not 340

Access to Healthcare – Funding 8.24 clinically indicated he is not required (ie he is under no legal obligation) to provide it to the patient although he should offer to arrange a second opinion.’8 Challenges to treatment decisions therefore require, first, a doctor willing to give the treatment and, secondly, a challenge to any funding refusal more subtle than simply saying that additional money should be spent. 1 [1993] Fam 15, [1992] 3 WLR 507 and see Chapter 1: Consent – General, paras 1.6 and Chapter 7: Access to Healthcare – Choice para 7.5. 2 Re J [1993] Fam 15 at 27. 3 Ibid, at 28. 4 It has been argued by Jonathan Youngs that the court contravened this principle in Re P [2015] EWCOP 42. Youngs says the doctors’ application to withdraw renal replacement therapy was based on their view it was overly burdensome. That could be said to fall within the language of Re J. If so that language may need revisiting to bring out the distinction between the doctors’ view on best interests and what is ethically or medically wrong. See Youngs, Can the courts force the doctor’s hand? Med L Rev 2016, 24(1), 99–111 and Powell, Dilemmas in the medical treatment of patients facing inevitable death Arch Dis Child. 2007 Sep; 92(9): 746–749 (www. ncbi.nlm.nih.gov/pmc/articles/PMC2084035). 5 [1995] 1 WLR 898. 6 Ibid, at 904, per Sir Thomas Bingham MR. 7 [2006] QB 273. 8 Ibid, para 50, per Lord Phillips MR.

What is the applicable jurisdiction? 8.24 It is well established that the Administrative Court will consider challenges to decisions about providing treatment for individual patients according to the tests of lawfulness in judicial review. There was considerable dispute in the Court of Protection about how that court should approach questions of the availability of treatment when considering a patient’s best interests. How can the court determine best interests if one party – generally the CCG – can remove many of the options from consideration? Conversely why should people who lack capacity have decisions about the availability of treatment made on the basis of ‘best interests’ while those with capacity can only challenge decisions on the basis of lawfulness?1 This was resolved by the Supreme Court in N (An Adult) (Court of Protection: Jurisdiction).2 N was an adult without capacity who lived in residential care. His parents sought a revised care package which would involve more visits to the family home. The CCG refused to fund or commission those visits and the Court of Protection determined that the current care package was in his best interests. Baroness Hale noted that the court ‘has no greater power to oblige others to do what is best than [N] would have himself’. The judgment goes on to give a useful discussion of the procedural responses open to the Court of Protection in that situation, ‘investigation … negotiation and sometimes mediation’.3 The Court of Appeal judgment explains the same point from a slightly different perspective, noting that courts and public bodies have different roles: courts look at one person’s best interests, while a public authority also has regard to the interests of a wide group of people and to the allocation of scarce resources between them.4 It also emphasised the role of the court in looking at options: it could – for example – push a public body to develop alternative care plans and ‘is not obliged to retreat at the first rebuff’.5 However, the ultimate decision 341

8.24  Access to Healthcare – Funding was between available options, expressed in a way relevant to many of the issues in this book: ‘… in exercising a welfare or best interests jurisdiction (to my mind, whether under the Children Act 1989, under the inherent jurisdiction, or under the Mental Capacity Act 2005), the court is choosing between available options.’6 1 This reflected earlier statements of principle about the division of powers between administrative and judicial bodies and the basis upon which the courts in parens patriae and wardship proceedings could not command additional resources; for example In re W (a minor) (Wardship: Jurisdiction) [1985] AC 791. 2 [2017] AC 549. 3 Ibid, paras 35 and 39 respectively. 4 Re N [2015] EWCA Civ 411 at para 46. 5 Ibid, para 35. 6 A local authority v PB [2011] COPLR Con Vol 166, per Charles J endorsed by Munby P in Re N (n4 above) para 24. Our emphasis.

8.25 Court of Protection judges will strive – usually at the directions stage – to ensure that doctors and health trusts put before them at the final hearing evidence of the realistic options for treatment. For example, Peter Jackson J in A Local Authority v E1 at the directions hearing required further inquiries to be undertaken about the actual treatment options for the patient with anorexia nervosa whose best interests were to be considered. In his final judgement he stated: ‘The other point that I would make is that in a case with legal, moral and ethical dimensions, it is important for the court to ensure that it is informed of the actual practical possibilities and not to be drawn into theorising. On the first day of the hearing, I was invited to reach a conclusion on the general principle of whether feeding E would be in her interests. I was not willing to engage in an exercise which was of no value without solid information about what treatment options were actually available.’2 The Court of Appeal in Re N also pointed out that the Court of Protection had jurisdiction to determine a human rights’ claim brought under s 7 of the Human Rights Act 1998.3 That might give it jurisdiction to deal with resources questions in certain cases (although, as is clear from the cases discussed below, medical treatment could only exceptionally be ordered under those principles). As a point of practice, consideration should be given to bringing a judicial review of a disputed refusal to make an option available and consolidating it with Court of Protection proceedings as to best interests. 1 [2012] EWHC 1639 (COP), [2012] HRLR 29. 2 Ibid, para 41. As a result, further inquiries were made and a detailed plan for treatment was put in place which the judge ultimately accepted was in the patient’s best interests. Without such clarity it is doubtful that the judge would have been willing to impose treatment to which the non-capacitous patient was then objecting: see Chapter 13: Feeding, paras 13.21, 13.24 and 13.31. 3 Re N [2015] EWCA Civ 411 at paras 46 and 85.

Will a court require that money be spent on a particular treatment? 8.26 It is only rarely that patients are seeking treatment that doctors do not consider can properly be given for clinical reasons.1 More commonly, the 342

Access to Healthcare – Funding 8.27 difficulty is that the funding body is not willing to fund the treatment. It is well established that cost is a relevant factor in decisions about medical treatment. In R v Cambridge Health Authority ex p B2 the parents of a ten-year-old child sought funding for a third round of treatment for leukaemia. The Court of Appeal held: ‘Difficult and agonising judgments have to be made as to how a limited budget is best allocated to the maximum advantage of the maximum number of patients. That is not a judgment which the court can make.’3 R (on the application of Condliff) v North Staffordshire PCT4 concerned laparoscopic gastric bypass surgery for a man with a body mass index in excess of 40 with co-morbidities including renal impairment and hypertension. In that case, the PCT5 had refused an individual funding request on the basis that the case was outside the PCT’s general policy for gastric bypass surgery and not exceptional. The Court of Appeal considered that it was legitimate for the PCT: ‘to perform [its] function by allocating [scarce] resources strictly according to the PCT’s assessment of medical need … [That was] the purpose for which the resources are provided.’6 The central relevance of limited public resources presents an often unsurmountable problem to bringing a claim seeking medical treatment a commissioner will not provide. It is extremely difficult for the courts to challenge decisions by public bodies based on the allocation of a budget, both as a matter of practice and principle: ‘These decisions involve a balance of competing claims on the public purse and the allocation of economic resources which the court is ill equipped to deal with. In the language of the late Professor Fuller … decisions of this kind involve a polycentric task. The concept of a polycentric situation is perhaps most easily explained by thinking of a spider’s web: “A pull on one strand will distribute tensions after a complicated pattern throughout the web as a whole …”’7 In addition, CCGs are under an express statutory duty to ensure that in each financial year expenditure does not exceed income.8 1 See Chapter 4: Deciding for Others – Children, paras 4.20–4.22 and in particular Portsmouth NHS Trust v Wyatt [2005] EWHC 2293 (Fam) per Hedley J at paras 29–30 discussed there. 2 [1995] 1 WLR 898, see also para 8.23 above. 3 Per Sir Thomas Bingham MR at [1995] 1 WLR 898 at 906F. 4 [2011] EWCA Civ 910, [2012] 1 All ER 68. 5 The role of the PCT (Primary Care Trust) would now be taken by the CCG. 6 n4 above, para 36. 7 R v Criminal Injuries Compensation Board ex p [1995] 1 WLR 845 at 857 per Neill LJ, citing Professor Fuller, The Forms and Limits of Adjudication (1978) 92(1) Harv L.R. 353, 395. 8 NHSA 2006, s 223H(1).

Human rights 8.27 HRA 1998 has not provided any alternative easy route for patients to challenge healthcare decision-making, but it does have implications for the management of healthcare. There have been gradual developments in immigration caselaw, for example, where the lack of medical care in other countries has been used as a basis to seek leave to remain in the UK. Practitioners should therefore consider the law in immigration cases when looking at the HRA in health care. 343

8.27  Access to Healthcare – Funding For a full discussion of Human Rights in relation to access to healthcare see Chapter 7: Access to Healthcare – Choice, paras 7.20–7.28.

Policy and guidance challenges 8.28 There are numerous policies which CCGs and NHS England should consider. For example, NHSA 2006 requires CCGs to ‘promote the NHS Constitution’ in the way in which they provide health services. There is a requirement to have in place ‘arrangements for making decisions and adopting policies’1 such that a CCG will have its own policies to consider. There are the various types of NICE recommendations. In 1996 an NHS trust applied to a health authority for additional funds to prescribe the then new drug beta-interferon. Government policy, expressed in a circular, was that local arrangements should be made to provide beta-interferon. The health authority refused to provide the drug save as part of a randomised controlled trial. The court held that this was not a way of implementing government policy – trials and treatment were fundamentally different: ‘The respondents did not take the circular into account and decide exceptionally not to follow it. They decided to disregard it altogether throughout 1996, because they were opposed to it. That is something which in my judgment they were not entitled to do.’2 This was applied in a case considering the refusal of a CCG to fund oocyte cryo-preservation for a woman about to undergo chemotherapy likely to leave her infertile. NICE guidance recommended that this be provided. The CCG policy was not to provide it on the basis that the evidence did not show it to be effective. The court concluded: ‘The defendant has no compliance obligation as such, but the issue in the instant case is whether CCGs may legitimately disagree with NICE on matters concerning the current state of medical science. NICE’s view is that the evidence base supports the effectiveness of oocyte cryopreservation, and the CCG’s sole basis for not following the NICE recommendation is that it disagrees … In my judgment the defendant could have found other reasons for not following the NICE recommendation, but not this one.’3 1 2 3

Regulation 34 of SI 2012/2996, discussed in paras 8.6, 8.8 and 8.18 above. R v North Derbyshire Health Authority ex p Fisher [1997] 38 BMLR 76. R (on the application of Rose) v Thanet CCG [2014] EWHC 1182 (Admin), [2014] 138 BMLR 101 at para 92; see para 8.17 above.

Equality law 8.29 The Equality Act 2010 provides substantive and procedural obligations relevant to service provision (by both private and public bodies) and to decision-making, in particular by public bodies. There are also express duties under NHSA 2006 on the Secretary of State for Health, NHS England and CCGs to ‘reduce inequalities’.1 While the Equality Act covers nine specific protected characteristics2 the obligation in the NHSA 2006 will apply to social inequalities as well. Public bodies must have ‘due regard’ to the need to eliminate discrimination and advance equality of opportunity.3 This ‘Public Sector Equality Duty’ 344

Access to Healthcare – Funding 8.30 (‘PSED’) imposes a duty on the decision-makers personally to have regard to eliminating discrimination and advancing equality and to the way in which risks to these goals may be eliminated before making a decision.4 The PSED is a common ground of challenge. In the Thanet case5 the court held that a proper policy on assisted reproduction would need to consider (i) the evidence base for semen and oocyte preservation, (ii) the guidance from NICE, and (iii) cost. Thanet’s policy was found to be in breach of the PSED because the CCG had not been properly analytical about the equality issues.6 However, challenges under the PSED will rarely if ever obtain services for an individual. That requires a challenge under the substantive obligations in the Equality Act 2010 which require people to be treated equally. Detailed consideration of possible challenges would require a lengthy analysis of equality law and thus for our discussion here we merely consider two examples. A striking feature of the Thanet case was that the CCG would fund semen preservation but not oocyte preservation. The claimant argued that semen and oocytes were inherently gender-based. This was therefore direct discrimination which could not, in law, be justified, on grounds of cost or at all. The court rejected this on the basis that there were biological differences between semen and oocytes.7 In another case a person with gender identity disorder had received hormone treatment for 15 years and lived as a woman. She applied to the PCT for funding for breast augmentation. Her psychiatrist and GP supported the application on the basis that this was – in the language used at the time – the best treatment for her gender identity disorder. The PCT’s policy was that gender reassignment surgery was not supported by a good evidence base and was not routinely funded. The Court of Appeal discussed the appropriate comparator for such a claim but did not overturn the defendant’s approach of considering transfemales and natal females seeking breast enlargement under one policy.8 1 2 3 4

5 6 7 8

NHSA 2006, ss 1C, 13G and 14T. For further discussion see Chapter 7: Access to Healthcare – Choice, para 7.29ff above. Listed in s 4 of the Equality Act 2010. Equality Act 2010 s 149. The principles are summarised in Bracking v Secretary of State for Work and Pensions [2013] EWCA Civ 1345, [2014] EqLR 60 at para 25. They have a duty to obtain relevant information, for the decision-maker personally to consider that information in advance of making a decision and to do so ‘in substance, with rigour and with an open mind’. See also Chapter 7: Access to Healthcare – Choice, para 7.36 above. R (on the application of Rose) v Thanet CCG [2014] EWHC 1182 (Admin), (2014) 138 BMLR 101 at paras 123–126 (see para 8.17 above). Ibid, paras 123–126. Ibid, para 122. R (on the application of AC) v Berkshire West PCT [2011] EWCA Civ 247, [2011] 119 BMLR 135 at paras 55–57.

Exceptionality 8.30 Most decisions are made by applying general policies, but it is normally necessary for policies to admit of exceptions in order to avoid being blanket bans. It is therefore common that patients need to show ‘exceptionality’ when making an Individual Funding Request. Policies do not have to define what the exceptional circumstances might be.1 Such a policy is lawful provided – as stated in R (Rogers) v Swindon NHS PCT – that ‘it is possible to envisage, and 345

8.30  Access to Healthcare – Funding the decision-maker does envisage, what such exceptional circumstances might be’.2 The court in that case held that, where the PCT had excluded reliance on financial considerations or NICE recommendations, it was difficult to see how any particular woman could show an exceptional clinical need for Herceptin. The result was that the policy was unlawful and the decision made pursuant to it not to fund Ms Rogers’ treatment was quashed.3 1 R v North West Lancashire Health Authority [2000] 1 WLR 977 at 991. 2 [2006] EWCA Civ 392, [2006] 1 WLR 2649 at para 62 (considering Herceptin). 3 Ibid, paras 83–84. Note the indication that a mandatory order to provide treatment was unlikely to be made (subject to further submissions) rather the question would be remitted for lawful reconsideration.

8.31 Another attempt to define exceptionality was where a patient was not ‘representative of a group of patients’. The court held that test was unlawful because it was looking for uniqueness not exceptionality and that on the primary care trust’s policy: ‘it becomes difficult, if not impossible, to envisage who and in what circumstances might be successful in overcoming this hurdle in respect of the drug Lenalidomide. It is no coincidence that no application for funding of Lenalidomide has been approved by this PCT. The crucial point, as I accept, is that the policy states that an application “must” be refused where a patient is “representative of a group of patients”; that the inevitable result of the policy is that if a patient is representative of a cohort of patients, then he is automatically refused treatment …’1 1

R (on the application of Ross) v West Sussex PCT [2008] EWHC 2252, 106 BMLR 1 considering the cancer drug Lenalidomide at paras 77–78. Note at para 95 the suggestion that treatment might begin ‘at the earliest time’ pending a fresh decision (but formally inviting submissions as to remedy).

8.32 A vital issue with an exceptionality test is to whom the patient should be compared. S (a child) v NHS England concerned an IFR by a 17 year old with narcolepsy seeking treatment with sodium oxybate at a cost of up to £13,000 per year in circumstances where the usual treatment was not effective.1 This was refused by NHS England on the basis that exceptionality was not shown by severe and deteriorating symptoms. The claimant contended that the comparator group should be all patients with narcolepsy and the defendant that the comparator group should be those who do not respond to the usual treatment. Although preferring the latter comparator group (compared to which it is clearly harder to be ‘exceptional’) the court concluded that the claimant was exceptional because her form of narcolepsy was rare, her failure to respond to treatment was also rare, her mental and physical health were deteriorating and she would benefit from treatment to a greater extent than others in the comparator group. 1

[2016] EWHC 1395 at paras 25–26 and 33–34.

8.33 An example of using statistics to mount a challenge is R (SB) v NHS England.1 The case concerned a child with the condition Phenylketonuria, a metabolic condition that prevents the body from breaking down a particular amino acid. It therefore builds up in the body and could cause brain damage, including severe learning delay and seizures. The standard treatment approach provided by the NHS is to control the condition with diet and supplements, but SB had autism and learning difficulties and developed fixations on particular foods. He could not use a diet-based approach and applied for funding to take Kuvan, a medication which lowered the levels of the relevant amino acid in some patients. His application was twice refused on the basis that 346

Access to Healthcare – Funding 8.35 his position was not exceptional. On a third application the IFR panel found his circumstances exceptional when presented with evidence that the rate of people with severe autism who both had Phenylketonuria and would respond to Kuvan was 0.03 per million – up to two people in the UK, including SB. 1

[2018] PTSR 576.

Clinically effective 8.34 NHS England also requires that IFR panels consider if there ‘is robust evidence of the clinical effectiveness of this drug/intervention’. Unlike exceptionality this term is not defined in the IFR policy. The analysis of the court in R (SB) v NHS England1 shows the subtlety that is possible in making these judgments. The court considered that clinical effectiveness had to be measured against target outcomes. In this case those outcomes were simply a reduction in the level of the relevant amino acid in the blood (which is what was to be otherwise achieved by diet and supplements). All the clinical evidence was that for those patients who responded to Kuvan it was effective. The panel called this evidence ‘limited’ despite the fact that NHS England’s own commissioning policy called it ‘good’. Further, the panel may have confused effectiveness (does it work) with benefit (does the patient get changes such as in growth or behaviour over and above that from dietary changes etc). Further, the panel confused the normal range with the upper end of the safe limit. 1

R (SB) v NHS England [2018] PTSR 576 at para 50.

Obtaining and interpreting evidence 8.35 Decision-makers need to identify and apply the relevant policy, to consider exceptions to that policy and to analyse general information and patient specific information. Where NICE has set out a well-researched conclusion about a treatment, NHS England and CCGs may not need to look at technical evidence other than about the particular patient. It is generally for a decision-maker exercising a statutory discretion to decide what factors are relevant, subject to Wednesbury review. In R (on the application of Dyer) v The Welsh Ministers the court was considering whether sufficient accommodation was available in Wales for a woman with learning difficulties and autism. Hickinbottom J accepted that the decision-maker had discretion both over what factors to take into account and over ‘the intensity of inquiry’ and stated that there was a ‘wide margin of discretion’.1 However, the decision-maker does have to get the facts right and interpret scientific evidence properly. That can be difficult where decisions have to be made urgently and panels have to consider a number of cases at each meeting. For example, in the Ross case2 the panel met urgently and by phone to consider the claimant’s Individual Funding Request. The court held that the panel failed to understand the figures for response rates to the drug and median survival rates. The trials for the drug had been so successful that they were stopped and half the control group given the drug.3 In another case a patient sought a prescription for Avastin. She was helped by the low cost of the drug – about £1,200 per cycle – which reduced the impact 347

8.35  Access to Healthcare – Funding of resources arguments. The claimant successfully relied on expert medical evidence to show that the panel had asked an irrelevant question about the role of Avastin in the patient’s treatment to date and had failed to take into account the chance that the drug might significantly prolong her life.4 The courts have been willing (subject to the argument that such complaints are really for the Ombudsman) to look at the details of assessments for continuing healthcare such as contradictions between the Nursing Needs Assessment Tool and CHC checklist and whether a Registered Nursing Care contributions assessment was carried out before a CHC assessment.5 1 [2015] EWHC 3712 (Admin) at paras 107–111. 2 See R (on the application of Ross) v West Sussex PCT [2008] EWHC 2252, 106 BMLR 1 and para 8.31 above. 3 Ibid, para 85. 4 R (on the application of Otley) v Barking and Dagenham PCT [2007] EWHC 1927, 98 BMLR 182 at paras 26–27. 5 See for example R (on the application of Lily Dennison) v Bradford Districts CCG [2014] EWHC 2552 and para 8.21, n2 above.

E CONCLUSION 8.36 There are limited routes of challenge to service provision decisions except judicial review. There is a right to complain about some health service decisions to the Parliamentary and Health Service Ombudsman, but there is no merits-based appellate jurisdiction over decisions about healthcare provision. There are some hints of change over procedural rights. For example, the Firsttier Tribunal has a power to make recommendations about the health and social care elements of integrated Education, Health and Care Plans for children with special needs.1 The Care Act 2014 provides a power for an appellate mechanism for social care decisions, albeit in a section not yet in force.2 However, these are only possible changes and early substantive change is unlikely. There are difficulties of practicality and principle in creating individual rights to a merits-based challenge to decisions about healthcare provision. This is a gap which judicial review might fill, but only in part and with difficulty given its focus on lawfulness, limits to legal aid and the costs risk faced by an individual claimant. The NHS in England is once again subject to significant reform. The new Bill is making its progress through Parliament as this book is being completed. As drafted that Bill marks a return to greater integration and planning of health and social care. For the purposes of the issues considered in this chapter a key question will be whether that new system leads to greater transparency in decision-making and greater individual rights of challenge to decision-making. 1 Special Education Needs and Disability (First-tier Tribunal Recommendation Power) (Pilot) Regulations, SIs 2015/358 and 2016/2. 2 Care Act 2014, s 72.

For updating material and hyperlinks related to this chapter, see www.serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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Part 2

Specific Problems

350

Chapter 9

Abortion

A

Statutory framework  9.1 Offences Against the Person Act 1861  9.2 Infant Life (Preservation) Act 1929  9.3 Abortion Act 1967  9.4 Human Fertilisation and Embryology Act 1990  9.5 B Particular issues of compliance with the Abortion Act 1967 conditions  9.6 Conscientious objection  9.6 Multiple foetuses  9.7 Does the procedure have to be successful to be lawful?  9.8 Does the procedure have to be performed by a medical practitioner?  9.9 Certification of medical opinion  9.10 The grounds  9.11 Risk of injury to the mother greater than if pregnancy terminated: s 1(1)(a)  9.11 Termination is necessary to prevent grave permanent injury: s 1(1)(b)  9.15 Risk to life of pregnant woman greater than if the pregnancy were terminated: s 1(1)(c)  9.16 Substantial risk of the child being seriously handicapped from physical or mental abnormalities: s 1(1)(d)  9.17 The place of treatment  9.18 C The patient’s consent  9.19 Capacitous adults  9.20 Children 9.21 Incapacitous adults  9.22 Determining capacity: termination of pregnancy  9.23 Best interests: termination of pregnancy  9.24 Use of force: non-consensual incapacitous patients  9.28 Procedure and evidence  9.29 Making an application  9.29 Timing of the application  9.30 Important considerations for the court  9.31 D Conclusion 9.34

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9.1  Abortion

A  STATUTORY FRAMEWORK 9.1 The termination of pregnancy is largely governed by statute. While this book is primarily concerned with decision-making in medicine, in the field of abortion it is necessary to be aware of the legal framework within which the decision must be taken. Any practitioner in this area1 must be aware that, unless there is a legal justification for it, any termination of pregnancy is likely to be unlawful and a serious criminal offence.2 By the same token, the patient’s freedom to choose an abortion is circumscribed by the law. 1 Practitioners should note the Department of Health’s Guidance for doctors on compliance with the Abortion Act (May 2014): see bit.ly/1nCtswB. 2 Although it should be noted that there is a campaign to decriminalise abortion supported in principle by, amongst others, the Royal College of Nursing: see Decriminalisation of Termination of Pregnancy Position statement (December 2018).

Offences Against the Person Act 1861 9.2 The procuring of a miscarriage of a foetus is a criminal offence unless some legal justification can be identified: ‘Every woman, being with child, who, with intent to procure her own miscarriage, shall unlawfully administer to herself any poison or other noxious thing, or shall unlawfully use any instrument or other means whatsoever with the like intent, and whosoever, with intent to procure the miscarriage of any woman, whether she be or be not with child, shall unlawfully administer to her or cause to be taken by her any poison or other noxious thing, or shall unlawfully use any instrument or other means whatsoever with the like intent shall be guilty …’1 This offence is not committed by the termination of the life of a child in the course of delivery.2 It has been held that it was a lawful justification for procuring a miscarriage that it was done for the purpose of saving the life of the mother.3 1 2 3

Offences Against the Person Act 1861, s 58. But see below for the offence of child destruction; para 9.3. R v Bourne [1939] 1 KB 687. This defence however has probably been supplanted by s 5(2) of the Abortion Act 1967 because anything done with intent to procure a miscarriage is unlawfully done unless authorised by s 1 of that Act. See below; para 9.4.

Infant Life (Preservation) Act 1929 9.3 If a foetus is capable of being born alive, ending its life unlawfully, whether in utero or during delivery, amounts to the offence of child destruction: ‘Subject as hereinafter in this subsection provided, any person who, with intent to destroy the life of a child capable of being born alive, by any wilful act causes a child to die before it has an existence independent of its mother, shall be guilty … Provided that no person shall be found guilty of an offence under this section unless it is proved that the act which caused the death of the child was not done in good faith for the purpose only of preserving the life of the mother.’1 352

Abortion 9.4 Under the statute, a foetus is presumed to be capable of being born alive at the gestational age of 28 weeks: ‘For the purposes of this Act, evidence that a woman had at any material time been pregnant for a period of 28 weeks or more shall be prima facie proof that she was at that time pregnant of a child capable of being born alive.’2 Clearly the presumption is rebuttable by evidence that a particular child was not capable of being born alive. A foetus is capable of being born alive if it is capable of: ‘… breathing and living by reason of its breathing through its own lungs alone, without deriving any of its living or power of living by or through any connection with its mother’.3 The statute does not mean that a foetus of a lower gestational age cannot be proved to be capable of being born alive, and the abortion of a foetus capable of these functions, whatever its age, would be an offence of child destruction.4 1 2 3

4

Infant Life (Preservation) Act 1929, s 1(1). Ibid, s 1(2). Rance v Mid-Downs Health Authority [1991] QB 587, [1991] 2 WLR 159 at 188; see also R v McDonald [1999] NI 150 (it was not necessary for the prosecution to prove that the child would have lived for any particular period of time provided it proved that the child would have lived, even for a short period of time). Rance, ibid.

Abortion Act 1967 9.4 The Act1 makes lawful what would otherwise be unlawful under the 1861 and 1929 Acts if certain conditions are met: ‘Subject to the provisions of this section, a person shall not be guilty of an offence under the law relating to abortion when a pregnancy is terminated by a registered medical practitioner if two registered medical practitioners are of the opinion, formed in good faith: (a) that the pregnancy has not exceeded its twenty-fourth week and that the continuance of the pregnancy would involve risk, greater than if the pregnancy were terminated, of injury to the physical or mental health of the pregnant woman or any existing children of her family;[2] or (b) that the termination is necessary to prevent grave permanent injury to the physical or mental health of the pregnant woman; or (c) that the continuance of the pregnancy would involve risk to the life of the pregnant woman, greater than if the pregnancy were terminated; or (d) that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.’3 1 There has been much controversy in relation to the position in Northern Ireland. At one time around 1,000 women travelled to England from Northern Ireland each year to obtain abortions which were not lawful under the stricter legal regime in Northern Ireland. Save in cases of medical emergency, abortions for women normally resident in Northern Ireland were not available on the NHS in England and had to be paid for privately: see R (on the application of A) v Secretary of State for Health (Alliance for Choice intervening) [2017] UKSC 41, [2017] 1

353

9.4  Abortion

2 3

WLR 2492, [2017] Med LR 347 in which the applicant argued that abortions which could not lawfully be obtained in Northern Ireland should be provided for free by the NHS in England in the same way as they would be for women ordinarily resident in England. The Supreme Court by a majority rejected this argument both on public law and Art 14 ECHR grounds, upholding the Secretary of State’s right to maintain a policy that NHS England should not fund services for people normally resident outside England. However, by the Abortion (Northern Ireland) (No 2) Regulations 2020/503 which came into force on 14 May 2020, abortions are now lawful when carried out in Northern Ireland in the circumstances laid down by those regulations. The position in law in Northern Ireland is beyond the scope of this work and practitioners are referred to the regulations. Sometimes referred to as ‘the social ground’. Abortion Act 1967, s 1(1), as amended by the Human Fertilisation and Embryology Act 1990, s 37.

Human Fertilisation and Embryology Act 1990 9.5 The 1967 Act was amended to the form quoted above to achieve a number of objectives. A time limit of 24 weeks was imposed on abortions performed on the ‘social ground’.1 The time limit imposed by the 1929 Act was removed from terminations on other grounds. In particular, this means that a termination of a pregnancy where there is a substantial risk that the child will be seriously handicapped may be performed at any gestational age, even if the foetus is capable of being born alive. Since the 1990 amendments there have been calls to reduce the 24-week limit further to reflect earlier foetal viability. An amendment tabled to the Human Fertilisation and Embryology Bill 2008 which presented options of 12-, 16-, 20and 22-week time limits was rejected by the House of Commons in May 2008.2 1 2

Abortion Act 1967, s 1(1)(a). Abortion Debate MPs reject limit cut, Daily Telegraph, 21 May 2008: see bit.ly/ Telegraph-210508. The most modest cut to 22 weeks was defeated by 71 votes. In addition, there have been a number of debates about the decriminalising of abortion up to the 24th week of the pregnancy: see, for example bit.ly/Hansard-Vol648,

B  PARTICULAR ISSUES OF COMPLIANCE WITH THE ABORTION ACT 1967 CONDITIONS Conscientious objection 9.6 The general rule that a patient is not entitled to force a doctor to provide treatment they are unwilling to give1 is, in the case of abortions, reinforced by a statutory exemption for those who have a conscientious objection to participation: ‘… no person shall be under any duty, whether by contract or by any statutory or other legal requirement, to participate in any treatment authorised by this Act to which he has a conscientious objection.’2 The exemption does not, however, cover treatment needed to save life or prevent grave permanent injury to the physical or mental health of the

354

Abortion 9.6 pregnant woman.3 Therefore a doctor or nurse4 faced with circumstances in which a termination is required under s 1(1)(b) could be obliged to undertake the treatment5 or face the relevant legal consequences, however strong their conscientious objection. The exemption does not cover activities which do not amount to participation in the procedure of termination and it is clear that the court will construe s 4(1) narrowly in deciding what amounts to ‘participation’ in the treatment. A secretary typing a referral letter is not covered by s 4(1)6 and neither is a midwife whose duties include supervising, co-ordinating and supporting the work of the labour ward, but who is not involved in the process of termination itself. In Doogan v Greater Glasgow and Clyde Health Board7 the Supreme Court decided that conscientious objection under s 4(1) could not be invoked by those performing ‘the host of ancillary, administrative and managerial tasks that might be associated with’ the treatment which brings about the termination of the pregnancy. Excluded were for instance, ‘the hospital managers who decide to offer an abortion service, the administrators who decide how best that service can be organised within the hospital … the caterers who provide the patients with food, and the cleaners who provide them with a safe and hygienic environment’. The Supreme Court recognised that all of those functions may be said in some way to be facilitating the carrying out of the treatment involved but concluded that ‘participate’ in s 4(1) meant ‘taking part in a “hands-on” capacity’.8 The entitlement of a practitioner to take advantage of the exemption does not relieve them of all duties towards the pregnant woman who has come for advice and assistance. Unless the practitioner is able to decline to assume any duty towards the patient, a duty of care will inevitably arise under which the doctor’s conscientious objection should be explained and advice offered about how to seek advice and treatment elsewhere.9 A conscientious objection does not entitle a practitioner to seek to impose their own views on patients.10 The practical solution for a practitioner with a conscientious objection is to make a standing arrangement with a colleague to accept referrals. Re J (a minor) (wardship: medical treatment) [1991] Fam 33. See Chapter 1 – Consent General, para 1.6; Chapter 7: Access to Healthcare – Choice, para 7.5; Chapter 8: Access to Healthcare – Funding, para 8.23. 2 Abortion Act 1967, s 4(1). 3 Abortion Act 1967, s 4(2). 4 It is not only doctors and paramedical professionals who are entitled to the exemption, but anyone who participates in the termination of a pregnancy. 5 If otherwise under a relevant duty of care to the woman. 6 Janaway v Salford Area Health Authority [1989] AC 537. 7 [2014] UKSC 68; [2015] AC 640. 8 Ibid, at para 38. 9 See Barr v Matthews (2000) 52 BMLR 217 for an example of a claim – albeit unsuccessful – against a practitioner (who was opposed to abortion on ethical and religious grounds) on the ground that he had prevented an abortion in breach of his duty to the patient. 10 GMC, Personal Beliefs and Medical Practice, Explanatory Guidance (2013, updated November 2020), especially para 29: ‘In assessing a patient’s conditions and taking a history, you should take account of spiritual, religious, social and cultural factors, as well as their clinical history and symptoms … It may therefore be appropriate to ask a patient about their personal beliefs. However, you must not put pressure on a patient to discuss or justify their beliefs, or the absence of them’ and para 31: ‘You may talk about your own personal beliefs only if a patient asks you directly about them, or indicates they would welcome such a discussion. You must not impose your beliefs and values on patients, or cause distress by the inappropriate or insensitive expression of them.’ 1

355

9.7  Abortion

Multiple foetuses 9.7 It is on occasion necessary or desired to destroy one of multiple foetuses being carried by a pregnant woman. ‘Selective reduction’ has become increasingly common as a result of the greater efficacy and use of IVF technology. Prior to the amendment of the 1967 Act,1 it might have been argued that to destroy a foetus while leaving one or more foetuses to be delivered alive would not amount to a termination of pregnancy for the purposes of acquiring the protection of the 1967 Act because the pregnancy would continue. Now, however, where there is a substantial risk that one of the foetuses would, if born, be seriously handicapped,2 anything done with intent to procure the miscarriage of that foetus will not be unlawful. Where one of the other grounds under s 1 of the 1967 Act applies, anything done with intent to procure the miscarriage of any of the foetuses will be lawful. 1 2

Abortion Act 1967, s 5(2), as amended by the Human Fertilisation and Embryology Act 1990, s 37(5). The ground specified in s 1(1)(d) of the Abortion Act 1967.

Does the procedure have to be successful to be lawful? 9.8 The 1967 Act might appear to require the termination to be completed for the Act to provide a defence in relation to the 1861 and 1929 Acts by use of the words ‘when a pregnancy is terminated’. Where a termination procedure fails and the foetus is born alive, certainly the Act provides no defence to an act of killing or attempting to kill it. Any such act will be subject to the full rigour of the law against homicide. However, it is unlikely that the mere failure of the termination procedure to achieve its intended goal would render the procedure unlawful. Both the 1861 and 1929 Acts require a specific intent to perform an act which would amount to the offence described. That intent must be absent if the practitioner honestly believes that they are performing a procedure which will end the pregnancy in compliance with the 1967 Act. The point is not free from controversy. One Law Lord expressed the view that the Act was not intended to cover failed terminations.1 The better view, expressed in the same case, is that the Act legitimises the whole treatment for the termination of the pregnancy and that it cannot have been the intention of Parliament to limit the legal protection to cases where the procedure was successful.2 1 2

Lord Wilberforce in Royal College of Nursing of the United Kingdom v Department of Health and Social Security [1981] AC 800 at 823, [1981] 2 WLR 279 at 295. Lord Diplock in Royal College of Nursing of the United Kingdom v Department of Health and Social Security [1981] AC 800 at 828, [1981] 2 WLR 279 at 299, with whom, on this point, Lord Edmund-Davies agreed: [1981] AC 800 at 833, [1981] 2 WLR 279 at 303.

Does the procedure have to be performed by a medical practitioner? 9.9 The Abortion Act 1967 requires the procedure to be carried out by a registered medical practitioner, that is, one who is registered by the General Medical Council under the Medical Act 1983. This does not mean that the entire procedure has to be performed by the doctor themself. A procedure will be lawful if it is prescribed and initiated by a medical practitioner who remains in charge of it.1 In R (Christian Concern) v Secretary of State for Health and 356

Abortion 9.10 Social Care2 the Court of Appeal made clear that the question of whether a doctor remained in charge of all stages of the termination treatment depended upon the context and could take into account developments in medical science and technology. Thus, it was lawful for the Secretary of State, in the context of the Covid-19 pandemic, to approve the home of a pregnant woman as a class of place where such treatment could be carried out by the taking of the drugs mifepristone and misoprostol which had been prescribed by a doctor. However, the requirement in the 1929 Act for a ‘wilful act’ may well import the requirement of an intent to act in circumstances which would be unlawful, rather than knowledge of the illegality of those circumstances. An act – albeit in accordance with a doctor’s instructions and under their supervision – in circumstances where the doctor is acting unlawfully could be said to have been a wilful act for these purposes. 1

2

Royal College of Nursing of the United Kingdom v Dept of Health and Social Security [1981] AC 800. The Royal College of Nursing advises: ‘Nurses continue to work within the provisions of the Abortion Act 1967 … providing they are carrying out treatment in accordance with delegated instructions from a registered medical practitioner. The medical practitioner remains responsible for care throughout any treatment’: Termination of Pregnancy: An RCN Nursing Framework (RCN, November 2020): see bit.ly/RCN-ToP-Nov20. [2020] EWCA Civ 1239, [2021] 1 WLR 885.

Certification of medical opinion 9.10 Except in an emergency, the two certifying doctors must give their opinion either in the prescribed form or in a ‘certificate of opinion’ designed by the doctor before treatment is begun.1 Even in an emergency, the doctors must still have formed their opinion before the treatment is begun. There is no express requirement that the doctors should have examined the patient personally or that either of them is the practitioner who actually performs the procedure. It might be envisaged, however, that there would be difficulties in establishing good faith without some form of examination or at least personal knowledge of the case.2 It has been suggested that the two doctors need not agree on the ground on which termination is justified.3 This is an overly liberal construction of the Act. While the section contemplates more than one ground being present in any one case, there would seem to be a requirement that the ground relied on should, in the opinion of at least two doctors, be present. If only one doctor considers that a particular ground is present, the wording of the section would not appear to be satisfied. Agreement that one of the grounds is met is sufficient, even where there is disagreement as to whether additional grounds are met. There is no requirement that the ground chosen by the medical practitioners is in fact correct. All that is required is that two doctors are of the opinion, formed in good faith, that the ground exists. As was stated in a rare criminal prosecution under the Act: ‘Thus a great social responsibility is firmly placed by the law upon the shoulders of the medical profession.’4 In May 2014, the Department of Health published Guidance in Relation to the Requirements of the Abortion Act 19675 in response to a number of concerns that had arisen about healthcare professionals’ approach to abortion. The Guidance is not statutory guidance: it sets out how the law was interpreted by 357

9.10  Abortion the Department of Health at that time, including the Department of Health’s expectation that: ●● ●● ●● ●●

the two doctors who certify that an abortion meets the criteria set out in the Act must consider the individual circumstances of the woman and be prepared to justify their decision; it is good practice for at least one of the certifying doctors to have seen the pregnant woman before reaching a decision about the termination; pre-signing a statutory abortion certificate prior to consideration of a woman’s circumstances is not compliant with the Abortion Act; doctors have a legal duty to report all abortions to the Chief Medical Officer.

However, the Guidance requires clarification in light of the Covid-19 pandemic and the developments in medical science and technology referred to by the Court of Appeal in R (Christian Concern) v Secretary of State for Health and Social Care.6 In that case the Court of Appeal interpreted the 2014 Department of Health Guidance as permitting discussion by telephone or over a webcam and made clear that there is no statutory requirement for either of the two doctors certifying the ground for termination to have seen or examined the patient. The Court of Appeal also noted NICE guidance published in 2019 which recommended the use of telemedicine appointments to improve access to abortion services.7 On 31 July 2020 the Royal College of Obstetricians and Gynaecologists published Guidance entitled ‘Coronavirus (COVID-19) infection and abortion care’ stating that: ‘providers can offer a complete early medical abortion service with consultation taking place via video or teleconferencing, and a treatment package sent to the woman’s home by courier, post or by other means … These models will help to limit the spread of COVID-19, support women to access abortion care if they are self-isolating and help providers to adhere to government guidelines on social distancing. Providers should organise their services to adopt these new models of care.’8 It is therefore not mandatory to examine the patient in person (as opposed to via video or teleconferencing) when certifying a termination to be performed using the drugs mifepristone and misoprostol. 1

2 3 4 5 6

7 8

Abortion Regulations 1991 (SI 1991/499), reg 3(1) and Sch 1. The Regulations were amended in 2002 to allow a doctor, either individually or jointly with the second certifying practitioner, to design their own form, so long as it complies with reg 3(1)(a)(ii) and is signed and dated by each practitioner. Following the termination, a separate notice of termination and the required information under Schedule 2 must be sent to the Chief Medical Officer within 14 days of the termination, either in a sealed envelope or by an electronic communication (reg 4(1)). See bit. ly/gov-uk-forms-1 where the forms can be downloaded. The determination of whether particular actions were done in good faith is to be carried out in criminal trials by the jury, albeit guided by appropriate evidence concerning accepted medical practice: R v Smith [1973] 1 WLR 1510, [1974] 1 All ER 376. Grubb, Laing and McHale, Principles of Medical Law (4th edn, OUP, 2017), p 863. But cf para 3(1)(a)(ii)(d) of the Abortion (Amendment) (England) Regulations 2002 (SI 2002/887). R v Smith [1973] 1 WLR 1510 at 1512, per Scarman LJ. Department of Health, Guidance in Relation to the Requirements of the Abortion Act 1967 (2014). [2020] EWCA Civ 1239, [2021] 1 WLR 885. Contrast the position under the Mental Health Act 1983, Pt II, s 11(5) which has been held to require physical attendance on the patient in relation to sectioning powers: Devon Partnership NHS Trust v Secretary of State for Health and Social Care [2021] EWHC 101 (Admin), [2021] 1 WLR 2945. NICE Abortion Care Guidance, 25 September 2019, p 33: see bit.ly/NICE-AbortionGuidance. Coronavirus (COVID-19) infection and abortion care, RCOG 31 July 2020, page 7: see bit.ly/ RCOG-Covid-care-2020.

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Abortion 9.15

The grounds Risk of injury to the mother greater than if pregnancy terminated: s 1(1)(a) 9.11 apply:

The doctors must be of the opinion that the following circumstances

9.12

[1] The pregnancy has not exceeded 24 weeks – s 1(1)(a)

The Act does not specify the precise starting date of the pregnancy for this purpose. This was addressed in R (BPAS) v Secretary of State for Health and Social Care.1 The Secretary of State wrote on 23 July 2018 to doctors performing terminations of pregnancy stating that the time limit under s 1(1)(a) equated to a pregnancy not exceeding 23 weeks and 6 days counting from the first day of the woman’s last menstrual period (that day being day 0). The Court of Appeal held that the letter from the Secretary of State contained a correct interpretation of s 1(1)(a). This decision is therefore authoritative guidance that the time limit begins with the first day of the woman’s last menstrual period and ends at midnight 23 weeks and 6 days thereafter. The following day is the first day of the 25th week. 1

[2020] EWCA Civ 355, [2020] 1 WLR 3240.

9.13 [2] There is a risk to the mental or physical health of the woman or any existing children of her family The Act does not quantify or describe what degree or type of risk must be present. There is no requirement that the doctors be satisfied that there will actually be physical harm or mental illness. Essentially, ‘health’ is likely to encompass whatever a doctor acting with professional competence and in good faith considers is a matter of health. There is no definition of ‘children of her family’ but it is presumably not intended to be limited to children born to her, but could include not only adopted children but any accepted by her as children of her family, by comparison with the similar concept in family law. It is the lack of definition which permits abortion on so-called ‘social’ grounds. This is further reinforced by the liberty given to the doctor to take into account the ‘pregnant woman’s actual and foreseeable environment.’1 1

Abortion Act 1967, s 1(2).

9.14 [3] The risk identified must be thought to be greater if the pregnancy were allowed to continue than if it were terminated How that comparison is to be undertaken is clearly a matter for the medical practitioners to consider, acting in good faith.

Termination is necessary to prevent grave permanent injury: s 1(1)(b) 9.15 This condition has no time limit attached to it. If the condition is satisfied, a termination may be carried out at any stage of the pregnancy before the baby is delivered. The condition requires more than a risk of injury: the procedure must be necessary to prevent the injury occurring. Thus, the doctors must be of the opinion that such injury will actually occur unless the 359

9.15  Abortion pregnancy is terminated and that there is no alternative means of preventing the injury. Of course, as this can be only a matter of opinion, the doctors do not subsequently have to prove that they were indubitably correct – only that they held the opinion in good faith. The injury sought to be prevented must be both grave and permanent, and may be to mental or physical health or both. This is to be contrasted with the injury contemplated in s 1(1)(a), where any injury will suffice if there is a greater risk of it occurring than if the pregnancy were terminated. What is or is not considered ‘grave’ may be a matter on which there can be different opinions, and may vary from case to case. Again, therefore, it is suggested that the doctor’s opinion, so long as it is formed in good faith, must be conclusive.

Risk to life of pregnant woman greater than if the pregnancy were terminated: s 1(1)(c) 9.16 No time limit is placed on the deployment of this condition. ‘Life’ in the context of this subsection must be taken literally and will not include injuries which will affect the quality of life which might be included in other conditions. The degree of risk is not quantified in the statute; therefore any level of risk will suffice to satisfy this condition, so long as the risk is greater than that which would exist if the pregnancy were terminated.

Substantial risk of the child being seriously handicapped from physical or mental abnormalities: s 1(1)(d) 9.17 There is no gestational time limit in relation to this condition. The risk involved must be ‘substantial’ and the handicap envisaged must be ‘serious’. Neither of these adjectives is defined in the Act. Professor Grubb has argued that whether or not a risk is ‘substantial’ is a matter of law, and that it will not be defined by the opinion of medical practitioners, however compliant they are with accepted medical practice and however much they form the opinion in good faith.1 If this is correct then medical practitioners run a risk: if they are found to have formed an opinion contrary to the view taken by a court as to what is properly described as substantial, they may be prosecuted for participating in an unlawful abortion because they would not, as a matter of law, have formed the requisite opinion. There is, however, a contrary argument. It must be remembered that this is a criminal statute and should be construed narrowly. It is suggested that if more were required than a doctor’s honest opinion that the risk was substantial (whether or not others would agree with that opinion) then Parliament would have said so clearly. The same consideration ought to apply to the meaning of ‘seriously’. Abortions under s 1(1)(d) came under heightened scrutiny in 2003 when a curate, Rev Joanna Jepson, sought permission to claim judicial review of a police decision not to investigate a doctor who performed an abortion under s 1(1)(d), the ‘serious handicap’ being a bilateral cleft lip and palate. Rev Jepson was granted permission and intended to pursue her argument that a cleft lip and palate could not constitute a ‘serious handicap’ and that from 24 weeks a foetus had a right to life under Art 2. The case was suspended pending a police investigation into the doctor who performed the disputed 360

Abortion 9.18 abortion and eventually discontinued after the CPS decided that there was insufficient evidence for a realistic prospect of conviction.2 While the Jepson case does not fetter a doctor’s professional judgement under s 1(1)(d), it does underline the possibility of criminal prosecution in cases where ‘substantial risk’ or, more importantly, ‘serious handicap’ are questionable. Although there is no list of qualifying ‘handicaps’,3 doctors will themselves take a view of foetal abnormalities on a sliding scale from those vitiating short-term viability to the cosmetic. The availability and efficacy of treatment will be factors for consideration. However, the mother’s view of the potency of the risk, the seriousness of the handicap or her willingness to bear, or to accept, a ‘seriously handicapped’ child is strictly of no relevance under s 1(1)(d) which requires an objective medical assessment of ‘substantial risk’ and ‘serious handicap’.4 In the absence of further definition in the Act or from the courts, doctors would be well advised to consult the RCOG’s 2010 Guidance on termination of pregnancy for fetal abnormality.5 The Department of Health’s Guidance in Relation to the Requirements of the Abortion Act 19676 explains that: ‘Abortion on the grounds of gender alone is illegal. Gender is not itself a lawful ground under the Abortion Act … However, it is lawful to abort a fetus where two RMPs are of the opinion, formed in good faith, “that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”, and some serious conditions are known to be gender related.’ 1 Grubb, Laing and McHale, Principles of Medical Law (4th edn, OUP, 2017), p 868. 2 Jepson v Chief Constable of West Mercia Police Constabulary [2003] EWHC 3318 (QB). 3 Rev Jepson intended to apply for a declaration that ‘serious handicap’ must be understood by reference to the remediability of the condition and that, given the availability of surgery to correct a cleft lip and palate, such condition did not constitute a ‘serious handicap’. 4 For arguments as to why parents’ views should receive recognition in this context, see R Scott, The Uncertain Scope of Reproductive Autonomy in Preimplantation Genetic Diagnosis and Selective Abortion, (2005) 12 Medical Law Review 291–327. The mother’s perspective will be important in a termination before 24 weeks, which can be undertaken pursuant to s 1(1)(a). The problem arises where foetal scanning is not performed until after 24 weeks and an abnormality is detected. 5 Royal College of Obstetricians and Gynaecologists, Termination of Pregnancy for Fetal Abnormality in England, Scotland and Wales (RCOG, 2010): see bit.ly/RCOG-TOPreport-2010. 6 See para 9.10, n5.

The place of treatment 9.18 Save for the situation in which a termination is immediately necessary to save the life or to prevent grave permanent injury to the physical or mental health of the pregnant woman, by virtue of ss 1(3) and (4) of the Abortion Act 1967, terminations may only be performed in a hospital ‘or in a place approved for the purposes of this section by the Secretary of State.’ The Secretary of State has given approval to certain independent sector clinics to perform terminations subject to certain conditions. By s 1(3A) of the Abortion Act 1967, the power to give such approval also includes power to approve a class of places in relation to treatment consisting primarily in the use of medicines.1 On 27 December 2018 the Secretary of State granted further approval in respect of the homes of pregnant woman 361

9.18  Abortion undergoing treatment with mifepristone and misoprostol for early medical abortions, limited to the second stage of treatment, i.e., taking the second medication.2 On 30 March 2020 the Secretary of State published a yet further approval of the ‘home of a pregnant woman’ as being a place authorised for the purpose of the Abortion Act 1967 where certain treatment for early medical abortion might be carried out, and approving the ‘home of a registered medical practitioner’ as a class of place for prescribing mifepristone and misoprostol for early medical abortions.3 Those approvals are time limited until either the temporary provisions of the Coronavirus Act 2020 expire or two years, whichever is the earlier. It was the former approval which was the subject of the unsuccessful challenge in R (Christian Concern) v Secretary of State for Health and Social Care.4 It remains to be seen whether this temporary approval in respect of certain early medical abortions in fact signals a movement to a more permanent extension of the places where some abortions may be performed by way of medication. 1 The Prescriptions Only Medicines (Human Use) Amendment (No 3) Order 2000 (SI 2000/3231) re-classified the ‘morning after pill’ (Levonelle) from a prescription-only drug to make it available over the counter to be dispensed by pharmacists. However, taking the ‘morning after pill’ does not amount to ‘procuring a miscarriage’ under the Offences Against the Person Act 1861 since it takes effect pre-implantation. In R (on the application of Smeaton) v Secretary of State for Health [2002] EWHC 610 (Admin), [2002] 2 FLR 146, Munby J held that pregnancy is not established until the fertilised egg has become implanted in the endometrium of the uterus. Accordingly, until this point is reached, the provisions of the Offences Against the Person Act 1861 and hence the Abortion Act 1967 are not engaged. Munby J was emphatic that ‘there is nothing in sections 58 and 59 of the [1861] Act which in any way criminalises, makes unlawful, or otherwise prohibits or inhibits the prescription, supply, administration or use of the pill, the mini-pill or the morning after pill (or, so far as the evidence before me bears on this aspect of the case, of IUDs).’ It does not appear from the law report that R (on the application of Smeaton) v Secretary of State for Health was cited to the Court of Appeal in R (Christian Concern) v Secretary of State for Health and Social Care [2020] EWCA Civ 1239, [2021] 1 WLR 885. 2 DHSC Approval of a Class of Places, 27 December 2018: see bit.ly/DHSC-Approval-271218. 3 DHSC Approval of a Class of Places, 30 March 2020: see bit.ly/DHSC-Approval-300320. 4 [2020] EWCA Civ 1239, [2021] 1 WLR 885, see paras 9.9 and 9.10 above.

C  THE PATIENT’S CONSENT 9.19 It goes without saying that the normal requirements for obtaining authority to treat a patient apply to a termination of pregnancy, and nothing in the legislation is intended to derogate from them. The following particular points should be noted.

Capacitous adults 9.20 No termination of pregnancy should be proceeded with unless the patient has been fully advised of the alternatives to termination and the relative risks of proceeding with the pregnancy and having the termination. Reasonable care must be taken to ensure that the patient is aware of any material risks involved in the termination, and of any reasonable alternatives, unless the doctor considers that such information would be seriously detrimental to the patient’s health or the patient requires the abortion urgently but is unconscious or otherwise unable to make a decision.1 In the case of an adult possessing the 362

Abortion 9.21 legal capacity to consent to the procedure, her refusal to have a termination is determinative, and it cannot lawfully be performed. No other person has any entitlement either to consent on her behalf or to prevent the procedure taking place. Therefore, the father of the foetus has no right to be consulted or to have his consent sought.2 1 2

Montgomery v Lanarkshire Health Board [2015] UKSC 11, [2015] AC 1430; see Chapter 1: Consent – General. Paton v British Pregnancy Advisory Service Trustees [1979] QB 276; C v S [1988] QB 135, Paton v UK (1981) 3 EHRR 408. See Chapter 12: Pregnancy and Childbirth, para 12.2.

Children1 9.21 A child, who has attained 16 years of age,2 or who is sufficiently mature in understanding,3 may consent to a termination of pregnancy. Such consent will be sufficient authority even if the child’s parents are unaware of the proposed treatment or actively oppose it.4 However, the consent of the parent will provide the doctor with legal justification, even where the child refuses.5 Where there is a dispute between parents and the child, or between the child and the doctor, the latter, in our opinion, should seek the guidance of the court exercising its parental jurisdiction before proceeding to a termination of pregnancy (although there is no obligation to do so, unless the child is already a ward of court).6 While, theoretically, it would be possible for an abortion to be imposed on an unwilling child, the courts (and most practitioners) will be very reluctant to proceed in this way. In Re W, Lord Donaldson MR described the: ‘[h]air-raising possibilities … of abortions being carried out by doctors in reliance upon the consent of parents and despite the refusal of consent by 16 and 17 year olds’ adding that: ‘[w]hilst this may be possible as a matter of law, I do not see any likelihood taking account of medical ethics, unless the abortion was truly in the best interests of the child.’7 Abortion is only likely to be imposed on an unwilling child where the pregnancy caused a serious risk to her life or health which she refused or was unable to recognise, such that an abortion (even against her wishes) was clearly in her best interests.8 Save for the direst emergency, an application must be made to court before imposing such a termination. See, generally Chapter 4: Deciding for Others – Children. Family Law Reform Act 1969, s 8. Gillick v West Norfolk and Wisbech Area Health Authority [1986] AC 112. Also JS C and CH C v Wren [1987] 2 WWR 669 (an Albertan court refused the parents’ application seeking to prevent their daughter from having an abortion: the 16-year-old girl had sufficient intelligence and understanding to make up her own mind). 4 Doctors should provide a child who is Gillick competent with abortion advice and treatment in the same way they would an adult. The child’s confidentiality, including from her parents, should be maintained: R (on the application of Sue Axon) v Secretary of State for Health and Family Planning Association [2006] EWHC 37 (Admin), [2006] QB 539. 5 Re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11. 6 Re G-U (A Minor) (Wardship) [1984] FLR 811, [1984] Fam Law 248. 7 Re W (A Minor) (Medical Treatment: Court’s Jurisdiction) [1993] Fam 64 and In the matter of X (A Child) [2014] EWHC 1871 (Fam). See Chapter 4: Deciding for Others – Children, paras 4.2–4.3. 1 2 3

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9.21  Abortion 8 Where doctors or parents attempt to override a child’s wish not to have an abortion, the court will have to assess whether an abortion over the child’s objections is truly in her best interests. The older the (competent) child is, the less credence will be accorded to the views of others in its assessment of best interests. See Chapter 4: Deciding for Others – Children, para 4.9ff.

Incapacitous adults 9.22 The termination of pregnancies in women over 16 with questionable capacity to make an abortion decision is governed by the Mental Capacity Act 2005 (‘MCA’).1 Unlike sterilisation, abortion was not included in the category of cases for which there was an obligation to seek a declaration from the Court of Protection under the previous Practice Direction 9E, now revoked,2 nor was it referred to in the Guidance issued by the Vice President of the Court of Protection in January 2020.3 In Re SG (a patient) the President decided that, in a case where a pregnant woman clearly lacked capacity, the provisions of the Abortion Act 1967 provided adequate safeguards, making a declaration as to best interests unnecessary.4 The Re SG decision was revisited in An NHS Trust v D,5 where Coleridge J noted that if the guidance in Re SG were to be strictly applied, it would leave responsibility for all termination decisions for mentally incapacitated women, regardless of the circumstances, in the hands of their medical professionals. Coleridge J held that this could not be correct in all cases and provided the following guidance:6 ●● ●●

‘Where the issues of capacity and best interests are clear and beyond doubt, an application to the court is not necessary.’ ‘Where there is any doubt as to either capacity or best interests, an application to the court should be made.’

As to cases where there is ‘doubt’, Coleridge J provided a non-exhaustive list of circumstances that would ordinarily warrant the making of an application:7 ‘(i) Where there is a dispute as to capacity, or where there is a realistic prospect that the patient will regain capacity, following a response to treatment, within the period of her pregnancy or shortly thereafter; ‘(ii) Where there is a lack of unanimity amongst the medical professionals as to the best interests of the patient; ‘(iii) Where the procedures under section 1 of the Abortion Act 1967 have not been followed (ie, where two medical practitioners have not provided a certificate); ‘(iv) Where the patient, members of her immediate family, or the foetus’ father have opposed, or expressed views inconsistent with, a termination of the pregnancy; or ‘(v) Where there are other exceptional circumstances (including where the pregnancy may be the patient’s last chance to bear a child).’ Coleridge J emphasised that if any case is considered to fall anywhere near the boundary line in relation to any one of the above criteria, it should be referred to the court and that the importance of a timeous application cannot be overstated.8 Save for (iii) above, these principles might apply to any decision to give irreversible medical treatment under the provisions of the MCA 2005. It has

364

Abortion 9.22 subsequently been confirmed that Coleridge J’s guidance remains authoritative post-MCA in A NHS Trust v P,9 where there was a doubt as to whether the patient had capacity to decide whether or not to continue with her pregnancy. Hedley J considered that the question came into the category of serious medical treatment. Where there is dispute or doubt, it would therefore be wise to seek the authority of the court. It has also been confirmed, in Re SB10 by Holman J, and in Re X (A Child)11 by Munby P, that the termination of pregnancy in the case of an incapacitated person is still regulated by the Abortion Act 1967. Munby P explained the position of the court: ‘In a case such as this there are ultimately two questions. The first, which is for the doctors, not this court, is whether the conditions in section 1 of the 1967 Act are satisfied. If they are not, then that is that: the court cannot authorise, let alone direct, what, on this hypothesis, is unlawful. If, on the other hand, the conditions in section 1 of the 1967 Act are satisfied, then the role of the court is to supply, on behalf of the mother, the consent which, as in the case of any other medical or surgical procedure, is a pre-requisite to the lawful performance of the procedure. In relation to this issue the ultimate determinant, as in all cases where the court is concerned with a child or an incapacitated adult, is the mother’s best interests.’12 The procedures under s 1 of the Abortion Act should be followed before the case comes to court. Where it has not been possible to do this, in the authors’ view in an appropriate case the matter should still be brought to court in reliance on Coleridge J’s guideline (iii) above. Abortion decisions about incapacitous women may arise in the context of the psychiatric hospital, where a woman detained under the provisions of the Mental Health Act 1983 falls pregnant. In Re SS (An Adult: Medical Treatment) Wall J suggested that it was ‘essential’ that each hospital has a protocol to deal with possible terminations. Protocols should be designed to address the issue in good time so that, wherever practical and in the interests of the patient, a termination can be carried out at the earliest possible opportunity. The protocol should also ensure that the patient is referred at an early stage for independent legal advice.13 The court’s positive duty to protect the welfare of incapable people has been fortified by the Human Rights Act 1998 and the right to respect for private and family life in Art 8(1) of the European Convention. Carrying out a termination in accordance with the requirements of the Abortion Act 1967, in circumstances where an incapacitated patient’s best interests require it, will not breach Art 8. Whilst it will constitute an ‘interference’ with the woman’s Art 8(1) rights, the interference will be permissible under Art 8(2) because it is necessary and proportionate to the legitimate aim of protection of the woman’s health.14 1 For detailed treatment of capacity and best interests, see Chapter 3: Deciding for Others – Adults. 2 Court of Protection Practice Direction 9E – Applications Relating to Serious Medical Treatment, s 5. 3 [2020] EWCOP 2; see Chapter 6: Going to Court, para 6.5. The Guidance is to operate until it is superseded by the revised Code of Practice, which at the time of writing is expected to be published in early 2022. 4 Re SG (A Patient) [1991] 2 FLR 329, [1993] 4 Med LR 75. Note also Re X, The Times, June 4, 1987 (an abortion would not be unlawful merely because the patient lacked the capacity to give informed consent).

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9.22  Abortion 5 6 7 8 9 10 11 12 13

14

An NHS Trust v D [2003] EWHC 2793 (Fam), [2004] 1 FLR 1110, [2004] Lloyd’s Rep Med 107. Butler-Sloss P authorised Coleridge J expressly to record her agreement with his guidance for ‘doubt’ cases (at 38). Based on the matters listed by Lord Brandon in Re F (Medical Patient: Sterilisation) [1990] 2 AC 1. Echoing the guidance of Thorpe LJ in Re S (Adult Patient: Sterilisation) [2000] 3 WLR 1288, [2000] 2 FLR 389 and Wall J in Re SS (An Adult: Medical Treatment) [2002] 1 FCR 73. [2013] EWHC 50 (COP) at para 7 and by the Court of Appeal In Re AB (Termination of Pregnancy) [2019] EWCA Civ 1215 at para 21. [2013] EWHC 1417 (COP). [2014] EWHC 1871 (Fam). Ibid, para 6. Re SS (An Adult: Medical Treatment) [2002] 1 FCR 73. The source of the ‘independent legal advice’ suggested by Wall J was to be the Official Solicitor or the solicitor who represented the patient at her Mental Health Review Tribunal. The guidance in Re SS was followed in An NHS Trust v D (see N5 above). An NHS Trust v D (see N5 above).

Determining capacity: termination of pregnancy 9.23 Complex questions arise when consideration is given to capacity in the context of a refusal to undergo a termination of pregnancy. The test of capacity is as set out in ss 2 and 3 of the MCA and is no different for terminations than for any other medical procedure.1 In A NHS Trust v P2 Hedley J emphasised the requirement that a person not be treated as incapacitous merely because she is making an unwise decision, emphasising that an inability to live independently in the community did not equate to a lack of capacity to make decisions about personal relationships: ‘The plain fact is that anyone who has sat in the Family jurisdiction for as long as I have, spends the greater part of their life dealing with the consequences of unwise decisions made in personal relationships. The intention of the Act is not to dress an incapacitous person in forensic cotton wool but to allow them as far as possible to make the same mistakes that all other human beings are at liberty to make and not infrequently do.’3 The question of capacity was considered in more detail in the case of Re SB,4 in respect of a young woman with bipolar disorder who wished her pregnancy to be terminated. SB herself gave evidence at some length and was found to have capacity to conduct the proceedings and decide to have a termination. It was relevant that SB’s previous termination meant that she understood the procedure, the risks, and ‘the finality of the event’.5 Holman J considered that even if SB based her decision partly on delusional views, she had other and rational reasons for wanting a termination. The judge identified three: the fact that SB was detained under the MHA and was unhappy where she was; her understandable worry about her own ability to bring up a child, given her mental health problems; and her suicidal thoughts, which she felt she might be driven to act upon if the pregnancy continued. In An NHS Trust v A, B, C and a local authority,6 Mostyn J also considered that the bar of capacity should be set relatively low in the case of a 13-year-old girl who was also desirous of a termination. The evidence was that A understood the two different options, and the implications of each, together with the risks of each option. The transcript of the evidence appended to the judgment shows 366

Abortion 9.23 that what she understood was the ‘gist’ of the procedure and the risks involved (including the risk that if things went wrong this could affect her chances of having a child in the future). A was also able to explain why she wanted a termination, namely that she felt she could not cope with the stress of a continued pregnancy. Although in both Re SB and An NHS Trust v A, B, C the court considered the woman’s reasons for wanting an abortion, this will not be relevant in every case. The correct position must be that if the woman understands the relevant information and can use and weigh it, her reasons for wishing to continue with the pregnancy (or not) will be immaterial, unless there is something in her reasoning which suggests that she is not able to use and weigh the relevant information to reach her decision. What is the information relevant to the decision? At the very least, capacity requires a woman to have the ability to understand: ●● ●● ●● ●●

she is carrying a foetus which is likely to be born alive if there is no termination; she will not have this baby if she has a termination of pregnancy; the general nature of the procedure to be performed – for example, suction, or induction of labour; and the general nature of the risks involved in having a termination or continuing with the pregnancy.7

However, in common with the cases involving capacity to engage in sexual relations,8 it seems likely that the bar for capacity to consent to abortion will continue to be set relatively low, so that although consideration should be given to the need to understand the proximate medical issues, an understanding of the practical realities of parenthood and of the social and economic consequences of the decision will probably not be relevant to the assessment of capacity to undergo an abortion.9 1 See Chapter 2: Consent & Capacity – Adults, paras 2.11–2.15. 2 [2013] EWHC 50 (COP). 3 Ibid, paras 10 and 16. 4 [2013] EWHC 1417 (COP). 5 Ibid, paras 34–35. 6 [2014] EWHC 1445 (Fam). 7 In Re CS (Termination of Pregnancy) [2016] EWCOP 10 Baker J determined that CS lacked capacity to decide whether to undergo the termination of her pregnancy noting at paras 10 and 11: ‘She is unable to retain information due to her post-traumatic amnesia and frequently unable to provide or communicate coherent answers to even simple questions. She is unable to understand or retain relevant information, including [1] the options for termination, [2] the extent of her pregnancy, [3] her previous views about pregnancy, [4] her personal circumstances and ability to care for her existing children. … The diagnostic test is plainly satisfied. As for the functional test, the evidence of the psychiatrist is that she appears to find it difficult to understand and retain information generally, including as to the issue in question. Thus, for example, she thought wrongly that she had been pregnant for only seven weeks when the psychiatrist spoke to her recently. The psychiatrist advises that she would not be able to take account of her memory and cognitive problems when seeking to balance relevant information. She is unable to concentrate for more than a very short period of time … Her capacity may be regained. Indeed, it is anticipated that there is a reasonable prospect that there could be a regaining of capacity, but it seems plain that that is not going to happen in the short term and certainly – or almost certainly – not in the timescale of the making of the decision in question. Sadly for her the prognosis is far from clear. The prospects of an effective termination may be lost if the decision is not taken now.’ 8 Re A (Capacity: Refusal of Contraception) [2011] 2 WLR 878 and M (An Adult) (Capacity: Consent to Sexual Relations) [2014] 3 WLR 409; although the bar for capacity to engage in

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9.23  Abortion

9

sexual relations has been somewhat raised as a result of the Supreme Court decision in A Local Authority v JB [2021] UKSC 52. Although note the fourth area of lack of understanding (her personal circumstances and ability to care for her existing children) reviewed in Re CS (n7 above).

Best interests: termination of pregnancy 9.24 Best interests will normally only fall to be considered where the woman lacks capacity to make the decision as to termination herself and where the conditions in s 1 of the Abortion Act are met. Absent these conditions being met, a termination would not be lawful and the court cannot make a decision that would authorise treatment which would in itself be unlawful, as set out in Re X.1 In this case Munby P went on to explain the approach to best interests: ‘Since there can be no lawful termination unless the conditions in section 1 are satisfied, and since it is a matter for the doctors to determine whether those conditions are satisfied, it follows that in addressing the question of the mother’s best interests this court is entitled to proceed on the assumption that if there is to be a termination the statutory conditions are indeed satisfied. Two things flow from this. In the first place this court can proceed on the basis (sections 1(1)(a) and (c)) that the continuance of the pregnancy would involve risk, greater than if the pregnancy were terminated, to the life of the pregnant woman or of injury to her physical or mental health or (section 1(1)(b)) that the termination is necessary to prevent grave permanent injury to her physical or mental health. Secondly, if any of these conditions is satisfied the court is already at a position where, on the face of it, the interests of the mother may well be best served by the court authorising the termination.’2 However, where s 1 certification has not been obtained but the situation is urgent, in the authors’ view consideration should be given to making an application in any event. Case law indicates that the woman’s wishes and feelings will generally have a magnetic importance in any weighing of best interests. This was the case in Re X, where the patient was a 13-year-old girl with a troubled history who initially wanted to keep the child. By the time the hearing concluded, she had changed her mind and was requesting a termination.3 The patient’s wishes were also determinative in Re CS (Termination of Pregnancy),4 where the patient had been attacked by her partner and suffered serious brain injuries which rendered her incapable of deciding whether to have a termination, and unable even to express consistent views about it. She had, however, expressed clear and unambiguous views before the injury that she wanted a termination. Baker J considered these wishes, which aligned with her best medical interests in promoting her physical recovery, were the ‘crucial factors’:5 ‘I bear in mind what I regard as the important fact that CS has previously had a termination of a pregnancy and therefore has the experience of both the physical and also the emotional consequences of the procedure. In expressing her clear views as she did prior to the injury, she was acting knowing of the consequences of having a termination, of what is involved physically, emotionally and psychologically.’6 1 2

Re X (A Child) [2014] EWHC 1871 (Fam). See para 9.22 above. Ibid, para 7.

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Abortion 9.26 3 4 5 6

Ibid, para 16. And note Munby P: ‘There is another vitally important factor that in many cases such as this may well end up being determinative and which in this particular case is, in my judgment, determinative: the wishes and feelings of the mother’ (para 8). [2016] EWCOP 10. Ibid, para 21. Ibid, para 19.

9.25 A striking example of the importance of the patient’s wishes is to be found in Re AB (Termination of Pregnancy).1 The patient in that case was a woman with moderate learning difficulties. The judge at first instance, Lieven J, granted a declaration that a termination might be carried out in the patient’s best interests notwithstanding the patient’s incapacity to provide legal consent. On appeal the Court of Appeal overturned the judge’s decision on the basis that the judge had failed to take sufficient account of the patient’s feelings, which were supported by the patient’s adoptive mother and her social worker, in the balancing exercise; and had given inadequate weight to the non-medical factors in the case. 1

[2019] EWCA Civ 1215.

9.26 Two further aspects may arise in termination cases which do not fall to be considered in other medical treatment cases: the baby and the father. In considering the ‘best interests’ test, the interests of persons other than the patient (even those of the baby1 and a fortiori those of society as a whole) are irrelevant. Nonetheless it might be argued that the patient’s ability to consider the interests of others is relevant to the assessment of her capacity. Continuation of the pregnancy will potentially mean that she has the baby, which may be of direct relevance to her own best interests. In the course of his consideration in Re X, Munby P said that he considered one factor which should be taken into account was ‘the likelihood or otherwise of X being able to keep her baby if there was no termination’.2 A more difficult question which may arise relates to the father of the foetus. In principle, he may be a person to be consulted under MCA s 4(7)(b) about what he knows of the patient’s wishes and feelings (and other matters in s 4(6)) and about what he considers would be in her best interests. However, his own wishes for a baby (or not) are irrelevant, and a potential father’s views may have to be treated with caution. In Re SB, where the woman’s evidence was that as far as she was concerned, ‘there was no future in the relationship’ with her husband,3 Holman J said that he ‘has a full right to participate in these proceedings and to express views about the various issues that arise. But he has no independent right, as father, to prevent the abortion if the mother has capacity …’.4 In Re CS (Termination of Pregnancy)5, Baker J arranged for notice of the application to be served on the woman’s partner, who was then in custody as a result of his attack on her. It is not clear from the judgment, however, whether this was done after evidence had been adduced as to whether the woman was capable of deciding whether he should be informed, and if not whether it was in her best interests for him to be informed. The authors suggest that the issue will need careful consideration in each case. 1 See Chapter 12: Pregnancy and Childbirth, para 12.10. In the first edition of this book, the question of whether an unborn child’s interests would have to be considered when addressing the ‘best interests’ tests in view of Art 2 of the ECHR was posed (and doubted, given the approach adopted in Paton v UK (1980) 3 EHRR 408). In Vo v France (2005) 40 EHRR 12 at 81–82, [2005] Inquest LR 129, the European Court of Human Rights held (by majority) that

369

9.26  Abortion

2 3 4 5

(i) the issue of when the right to life begins comes within the margin of appreciation which Member States should enjoy; (ii) that there is no European consensus on the scientific and legal definition of the beginning of life. The court decided that ‘it is neither desirable nor even possible as matters stand, to answer in the abstract the question whether the unborn child is a person for the purposes of Article 2’. Given the court’s reasons for taking a firm stand and bearing in mind the expansion of the EU, it is suggested that the court’s position is unlikely to change for the foreseeable future. The position in England and Wales, within the domestic court’s margin of appreciation, is tolerably clear: a foetus does not have any independent legal rights or status. See, in the abortion context, Paton v British Pregnancy Advisory Service Trustees [1979] 1 QB 276; C v S [1987] 1 All ER 1230 and, in the context of a mother’s refusal of treatment during pregnancy, Re MB (An Adult: Medical Treatment) (1997) 38 BMLR 175; St George’s Healthcare Trust NHS Trust v S (No 2) [1999] Fam 26; R v Collins, ex p S (No 2) [1998] 3 All ER 673. See Chapter 12: Pregnancy and Childbirth, para 12.2. [2016] EWCOP 10 at para 17. [2013] EWHC 1417 (COP) at para 40. Ibid, para 8. [2016] EWCOP 10.

9.27 It cannot be assumed that the court will necessarily take the same view of best interests as the treating clinicians: see Re SB above1 and in Re SS (Medical Treatment, Late Termination)2 in which a schizophrenic woman was detained in a psychiatric hospital under s 3 of the Mental Health Act 1983. An application for a declaration that SS lacked capacity to make an abortion decision and that a termination would be in her best interests was made when she was nearly 24 weeks pregnant. The expert evidence was that the procedure used for a late termination (foeticide followed by induction of labour, typically taking 24 hours) would be no less traumatic than normal birth followed by removal of the child for adoption. Wall J contrasted the observations that a late abortion procedure required SS’s co-operation which she might not give and that it was unlikely that she would have any real understanding of the procedure with the fact that SS had given birth to four children by straightforward labour. Wall J decided ‘on fine balance’ that the continuation of the pregnancy carried the lesser detriment to the applicant and that a termination was not in her best interests. The courts have applied the ‘best interests’ test in favour of allowing children to undergo abortions. For example, in Re B3 a mother opposed her 12-yearold daughter undergoing an abortion. The child, the putative father and her maternal grandparents supported the procedure. The court agreed with the local authority’s view that it was in the child’s best interests to have the abortion as continuation of the pregnancy involved greater risks to her mental and physical health. An NHS Trust v A, B, C and Re X4 are more recent examples of the same approach, in which in each case the subject of the proceedings was a 13-yearold girl. 1 2 3 4

[2013] EWHC 1417 (COP). [2002] 1 FLR 445, [2002] 1 FCR 73. Re B (Child: Termination of Pregnancy) [1991] 2 FLR 426. Re X (A Child) [2014] EWHC 1871 (Fam). See para 9.22 above.

Use of force: non-consensual incapacitous patients 9.28 If an incapacitous patient is reluctant to undergo a termination, it may be that it will have to be performed under sedation or restraint. In the case of a patient over the age of 16 who lacks capacity, the provisions of s 6 of the MCA apply and the test set out there must be met.1 For children under the age of 16, the common law continues to apply.2 370

Abortion 9.28 Under s 6, any restraint must be proportionate to the ‘harm’ it is seeking to avoid. ‘Harm’ is not defined in the Act and can include both the physical and psychological harm arising from the continuation of pregnancy. The restraint must also be in the patient’s best interests under s 5. In two cases decided before the MCA came in force, Tameside and Glossop Acute Services Trust v CH3 and Norfolk & Norwich Healthcare (NHS) Trust v W,4 it was held that the mothers lacked capacity. The obstetricians wished to bring delivery forward in time by, if necessary, caesarean section. It was held that it would be lawful to use reasonable force to achieve this in the best interests of the patient. This principle was affirmed in Re MB (An Adult: Medical Treatment).5 The court held that it followed from the determination that treatment was in the patient’s best interests that treatment could be given forcibly despite her objections, although difficult questions arose as to how to strike the balance between continuing treatment which is forcibly opposed and deciding not to continue with it. The same principle would apply in the case of the termination of the pregnancy of a patient lacking the capacity to refuse such a procedure, but who was resisting it. In Re CS, the court granted a declaration that proportionate force could be used to restrain the patient in the course of the procedure.6 This is likely to be a highly unusual case, because the best interest decision is likely to follow the patient’s actual wishes. As Munby P noted in Re X above: ‘The point is very simple and profoundly important. This court in exercise of its inherent jurisdiction in relation to children undoubtedly has power to authorise the use of restraint and physical force to compel a child to submit to a surgical procedure … I say nothing about how this power should appropriately be exercised in the case of other forms of medical or surgical intervention. In the case of the proposed termination of a pregnancy, however, the point surely is this. Only the most compelling arguments could possibly justify compelling a mother who wished to carry her child to term to submit to an unwanted termination. It would be unwise to be too prescriptive, for every case must be judged on its own unique facts, but I find it hard to conceive of any case where such a drastic form of order – such an immensely invasive procedure – could be appropriate in the case of a mother who does not want a termination, unless there was powerful evidence that allowing the pregnancy to continue would put the mother’s life or long-term health at very grave risk. Conversely, it would be a very strong thing indeed, if the mother wants a termination, to require her to continue with an unwanted pregnancy even though the conditions in section 1 of the 1967 Act are satisfied.’7 In all such cases, the doctors will have to decide whether the proposed termination is compliant with the Abortion Act 1967, s 1 and in the patient’s best interests under the MCA. 1 For more detailed consideration of the use of restraint, see Chapter 5: Restraint and Deprivation of Liberty 2 See Chapter 4: Deciding for Others – Children, paras 4.5–4.12, above. 3 [1996] 1 FLR 762 at 773–774. 4 [1996] 2 FLR 613. 5 [1997] 2 FLR 426, (1997) 8 Med LR 217. 6 [2016] EWCOP 10, para 24. 7 Ibid, para 9.

371

9.29  Abortion

Procedure and evidence Making an application1 9.29 Decisions about whether to make an application to the court for a declaration of lawfulness, or order consenting to the procedure, should be made using the guidance in An NHS Trust v D.2 Where there is any doubt as to capacity or best interests, the presumption should be in favour of seeking a decision from the court. 1 See Chapter 6: Going to Court for procedure generally. 2 An NHS Trust v D [2003] EWHC 2793 (Fam), [2004] 1 FLR 1110, [2004] Lloyd’s Rep Med 107.

Timing of the application 9.30 Applications to the court in relation to termination of pregnancy where the patient’s capacity and/or best interests are in question should be made as soon as practicable and, so far as possible, well before the 24th week of pregnancy.1 Reports should be obtained, preferably from two independent consultant psychiatrists, establishing that the patient lacks capacity to give or withhold consent. Care must be taken to ensure that the psychiatrists consider the test as set out in s 2 of the MCA.2 1 See para 9.22 above and Re SS (An Adult: Medical Treatment) [2002] 1 FCR 73. 2 See Chapter 2: Consent & Capacity – Adults, paras 2.2–2.11.

Important considerations for the court 9.31 ●●

●●

Statutory position: –– The views of any treating doctors and in particular their opinion about the existence of grounds for a termination under the Abortion Act 1967 and whether such a procedure was appropriate for the patient. Capacity: –– The basis on which it is asserted that the patient lacks the ability to weigh treatment information in the balance. For example, the mere fact that a patient is unwilling to discuss the pregnancy with psychiatric staff and is frightened cannot of itself be sufficient to show lack of capacity for this particular decision. –– The information which has been put to the patient about the advantages and disadvantages of pregnancy/termination and her response to it. –– Whether the possibility of foetal abnormality has been put to the patient and, if so, the manner in which this was done and her response. –– The patient’s comprehension: $$ that she is carrying a foetus which is likely to be born alive if there is no termination;

372

Abortion 9.31 $$

●●

that she will not have this baby if she has a termination of pregnancy; $$ of the general nature of the procedure to be performed; $$ of the general nature of the risks involved in having a termination or continuing with the pregnancy; $$ of the nature and extent of the physical and emotional stress associated with childbirth; $$ of the risk (if relevant) of her child being physically or mentally impaired. –– Evidence from a speech and language therapist may assist where there are issues concerning the patient’s ability to comprehend. Their view on the patient’s understanding of everyday vocabulary and complex adult language may assist. A view as to her ability to understand is crucial to a determination under s 2 of the MCA. Best interests: –– The ability of the patient to care for the baby after the birth, with or without support. –– The availability of such support, if it is needed. –– The likelihood of the baby being taken into care immediately after birth and the impact this would have on the patient. –– The risk of the baby being born disabled. –– Any difficulties foreseen in getting the patient to hospital, and persuading her to stay there. –– If the patient is undergoing other forms of treatment, the impact the termination will have on her relationship with her treating physicians and the risk of permanent damage to this relationship. –– The likely difference between termination and continuing to full term on the patient’s future (1) mental state; and (2) relationship with therapeutic staff. –– The physical risks of the patient continuing with the pregnancy, as assessed by the obstetric/gynaecology team. –– If the patient is young, the attitude of her parents or close family to the pregnancy (and if there is no one in this category, an IMCA should be instructed). –– If the patient is attending a school or college the views of any tutor with detailed knowledge of her abilities, personality and needs. –– If the patient is likely to abscond, the available supervision options. –– The nature of the relationship with the father of the unborn child, and, where this is continuing, his attitude to the pregnancy, and likely impact of a termination on the relationship. –– The maturity of the pregnancy and any associated urgency. –– Vitally, the wishes and feelings of the patient in relation to continuation of the pregnancy. Evidence from a speech and language therapist may also be helpful where there are issues concerning the patient’s ability to communicate those wishes and feelings.

In the authors’ experience, courts faced with an application for an order that an abortion is in a woman’s immediate best interests have also required the parties 373

9.31  Abortion to address more wide-ranging questions about how she became pregnant in the first place and what steps have been put in place to avoid similar situations recurring. Those representing parties at such applications should be fully prepared to deal with the broader questions of the woman’s ongoing capacity and best interests in relation to her sexual and reproductive health. 9.32 If an application is being considered, the Official Solicitor should be informed of the case immediately. If there are issues concerning what would happen to the baby after delivery it would be important to consider adding Social Services as a party. In any event, reports should be obtained from the relevant care manager if the local authority responsible for social services have been involved. In addition to input from any material family or friends, evidence should also be sought from any general practitioner, obstetrician or community nurse involved in the patient’s care. 9.33 Where a patient does not resist the procedure, it is suggested that a declaration should include the following terms:1 ‘UPON it being emphasised that the permissive declaration (below) does not detract from the duties imposed on treating clinicians by section 1 of the Abortion Act 1967 ‘AND UPON the Court observing that, subject to the satisfaction of the statutory criteria and those contained in the declaration at paragraph x (below) the termination of P’s pregnancy, if it is to take place, would in her best interests be better undertaken before … if possible ‘IT IS DECLARED PURSUANT TO S 15 MENTAL CAPACITY ACT 2005 THAT: ‘(1) [P] lacks the capacity to consent to (or refuse) a termination of her current pregnancy. (2) It shall be lawful in the present circumstances, as being in [P]’s best interests, for a doctor treating her to carry out a termination in accordance with the criteria as set out in section 1 of the Abortion Act 1967 notwithstanding her incapacity to provide legal consent, subject to her being compliant and accepting of such medical procedure.’2 IT IS ORDERED PURSUANT TO S 16 MENTAL CAPACITY ACT 2005 THAT: ‘(3) The court consents to the procedure set out at paragraph (2) above on behalf of P.’ 1 2

See generally Chapter 6: Going to Court. Note the order in relation to a 13 year old made by Munby P in Re X (A Child) [2014] EWHC 1871 (Fam) at para 20: ‘UPON hearing live evidence from … ‘AND UPON both medical experts expressing the view during the course of the evidence that a reversible contraceptive implant would in their respective opinions also be in X’s best interests ‘AND UPON the court having been informed on Wednesday … that X has consistently expressed a wish to have a termination and the implant of contraceptives since … and that a surgical procedure has been booked to carry these out … on … ‘AND UPON it being emphasised that the permissive declaration at paragraph 2 (below) does not obviate treating clinicians from the duties imposed on them pursuant to section 1 of the Abortion Act 1967

374

Abortion 9.34



‘AND UPON the Court observing that, subject to the satisfaction of the statutory criteria and those contained in the declaration at paragraph 2 (below), the termination of X’s pregnancy, if it is to take place, would in her best interests be better undertaken before … if possible ‘IT IS HEREBY DECLARED THAT: ‘1 X does not have the capacity to make the decision as to whether her pregnancy should proceed or be terminated, or whether she should have a contraceptive implanted in her. ‘2 It shall be lawful, as being in X’s best interests, for a doctor treating her to carry out a termination in accordance with the criteria as set out in section 1 of the Abortion Act 1967 notwithstanding her incapacity to provide legal consent, subject to her being compliant and accepting of such medical procedure. ‘3 It shall be lawful, as being in X’s best interests, for reversible subcutaneous or intrauterine contraception to be administered to [her] at the same time as a termination of pregnancy, provided that [she] does not raise any objection to this course …‘.

D CONCLUSION 9.34 It is still the case for all abortions that the requirement for certification by two doctors means that the medical profession remains the ‘gatekeeper’ of a woman’s choice. Whilst abortion may not have attracted the sustained legal challenge or political centre stage which the equivalent jurisprudence has in the United States, there is continuing debate about whether abortion should be decriminalised. One of the key battlegrounds for abortion campaigners has been, and will remain, the time limit for ‘social’ abortions. The time limit was lowered from 28 weeks to 24 weeks in 1990 and attempts at further reduction in 2008 failed. A reason for this failure was that, despite significant advances in neonatal technology in the 1980s, since 1990 the threshold of viability has not been reduced appreciably. By the same token, any significant advances in the threshold of viability will spark renewed calls for a reduction in the 24-week limit.1 A further area of dispute is ‘late term’ abortions which can technically be performed just minutes before birth and – as the petitioner in the US case of Gonzales v Carhart2 argued – sometimes by necessarily barbaric procedures. It should be noted, however, that late abortions are only available in extremis and are very rare: of the 209,519 abortions performed in 2019 in England and Wales, 82% were at under ten weeks’ gestation,3 91% were carried out at under 13 weeks’ gestation, 2% were performed at 20 weeks and over and only 0.1% (279) were performed at 24 weeks and over.4 1 The Nuffield Council on Bioethics’ 2006 report Critical care decisions in fetal and neonatal medicine: ethical issues (November 2006) noted the following (at para 9.17): ‘At the time of writing, most babies born at 23 weeks die or survive with some level of predicted disability even if care is given. Survival and discharge from invasive care for babies born between 22 and 23 weeks is rare. The Working Party has no evidence of any therapeutic developments likely to improve the prospects of babies born before 22 weeks in the near future.’ Available at bit.ly/Nuffield-151106. 2 550 US 124 (2007). 3 Compared to 79% in 2013 and 60% in 2003. 4 Department of Health, Office for National Statistics: Abortion Statistics, England and Wales: 2019: see bit.ly/DHSC-Abortion-Stat-2019. The number being performed at 24 weeks and over, though, has more than doubled (from 124, 0.067%) since 2014.

For updating material and hyperlinks related to this chapter, see www. serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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376

Chapter 10

Sterilisation and Contraception

A B

C

D

E

General 10.1 The capacitous patient  10.2 General rule  10.2 Informed consent  10.3 The role of partner/spouse  10.4 Procedure 10.5 Adults 10.6 Capacitous adults  10.6 Adults lacking capacity to consent  10.7 Capacity 10.7 Best interests  10.8 General application of ‘best interests’ principle in sterilisation and contraception cases  10.9 The prospect of attaining or recovering capacity for a relevant decision  10.10 The risk of sexual contact  10.11 The availability of other methods of contraception  10.12 The need for counselling and education  10.13 The risks of pregnancy  10.14 Freedom of association and reduction of intrusion by statutory services  10.15 The effect on the standard of care  10.16 Male patients  10.17 The immediacy of the risks  10.18 Covert treatment  10.19 Procedure 10.20 Children 10.24 General principle  10.24 Children with no learning disabilities  10.24 Children with learning disabilities  10.25 Best interests  10.26 Procedure 10.27 Conclusion 10.28

377

10.1  Sterilisation and Contraception

A GENERAL 10.1 Sterilisation is a form of medical treatment with grave consequences. It removes, usually permanently, the ability to reproduce. Medically it is now relatively simply achieved and therefore the temptation to solve perceived social problems by this route may be increased. While the procedure is performed on men and women who consent to it as a matter of routine, this will always be a socially sensitive area, requiring meticulous attention to counselling and consent protocols if the anxieties provoked by history are to be allayed. As with any other invasive procedure, sterilisation cannot be performed without the consent of the capacitous patient. Usual procedures for obtaining consent apply.1 Particular attention must, however, be paid to the need to explain to the patient the material risks associated with the procedure and any reasonable alternative or variant treatments, such as long-acting reversible contraceptive methods.2 Sterilisation of people unable to make their own decisions is an emotive and sensitive subject and any case involving it, or medical forms of contraception, must be treated with considerable care and caution. There are obvious reasons for this. The twentieth century saw horrific policies implemented with the objective of promoting ethnic purity. The Nazis embarked on widespread sterilisation of particular groups, including the mentally disabled, as part of their overall plan of Aryanisation. Less well remembered is the policy followed by many states in the USA encouraging the compulsory sterilisation of mental patients, a policy found to be constitutional by the Supreme Court in 1927 where Holmes J felt able to declare: ‘Three generations of imbeciles is enough.’3 Such attitudes have largely disappeared by reason of the emphasis placed on human rights which are now recognised in domestic law, in particular the rights to respect for private and family life and to marry and found a family.4 The proposal to sterilise someone without their consent or even comprehension may, at first blush, seem a denial of these fundamental rights and a return to dated and repugnant attitudes. Nevertheless, countervailing considerations may arise. Paternalistic attitudes towards the care of people with learning disabilities or other mental impairments have largely been replaced with a desire to enable every person to live as independent and fulfilled a life as possible. Capacity is decisionspecific. People may retain capacity to engage in sexual relations but lack capacity to make decisions about contraception. Safeguarding restrictions may prevent them from associating with partners with whom they could have sexual intercourse because of the disadvantages, both psychological and physical, of producing children. Sterilisation or contraception may, however, allow a fulfilling emotional and sexual relationship to develop without the trauma and damage likely to be caused through pregnancy and/or birth. In such circumstances, sterilisation or long-acting contraception, rather than being a restriction on a person’s liberties, can be a means of freeing a person with disabilities from the constraints that would otherwise be necessary.5 Proposals for sterilisation for non-therapeutic reasons should be regarded as the last resort after all other steps to address the concerns thought to arise 378

Sterilisation and Contraception 10.2 in any particular case have been considered or tried without success. Given the enormity of what is being sought and the competing considerations in evaluating such a proposal, the sterilisation of a patient who lacks the capacity to consent, whether child or adult, must not be undertaken without an appropriate application being made to the court and a thorough examination of the evidence and all relevant issues. It is a matter of concern that as recently as 2013 some doctors and public bodies remained unaware of the need to refer the question of non-therapeutic sterilisation of an incapable person to the Court of Protection.6 As Cobb J stated in A Local Authority v K: ‘Referral to the Court of Protection in a case such as this could and should always be considered at the earliest moment … Such a treatment decision is so serious that the Court has to make it.’7 This is not necessarily the case in respect of the provision of contraception, where, if all involved in the decision are in agreement, there may be no need for an application.8 1 See Chapter 1: Consent – General. 2 For women, the non-hormonal copper coil (IUD), the hormonal coil (IUS), the contraceptive injection (Depo-Provera) and the hormonal implant. For men, there are currently no medical forms of contraception widely available in the UK, although male contraceptive pills, injections and gels are under research and development, see, eg ‘The pill for men’ NHS inform, see bit.ly/NHSScot-male-pill. 3 Buck v Bell 274 US 200 at 207 (1927). 4 Human Rights Act 1998; the European Convention on Human Rights (ECHR), Art 8. 5 As in An NHS Trust v DE [2013] EWHC 2562 (Fam), [2013] FCR 343 or The Mental Health Trust v DD [2015] EWCOP 4. 6 See, for example, A Local Authority v K [2013] EWHC 242 (COP), [2014] 1 FCR 209 at para 35, where the surgeon proposing to conduct the sterilisation was unaware of this requirement and the Local Authority in bringing the proceedings appeared to have been prompted more by the perceived need for injunctive relief than for the declaration itself. 7 [2013] EWHC 242 (COP), [2014] 1 FCR 209 at para 36. See also Practice Guidance (Court of Protection: Serious Medical Treatment) [2020] EWCOP 2, [2020] 1 WLR 641 at para 11; see bit.ly/VP-Guide-Jan-20. 8 See A Local Authority v P [2018] EWCOP 10, [2019] COPLR 44, per Baker J at para 56, and Practice Guidance (Court of Protection: Serious Medical Treatment) (n7 above) at para 11, which refers to the need for an application in respect of ‘a procedure for the covert insertion of a contraceptive device or other means of contraception’ (emphasis added).

B  THE CAPACITOUS PATIENT General rule 10.2 No sterilisation should be performed on a capacitous patient without their consent. Where in the course of some other operation, for example a Caesarean section or gynaecological procedure, it becomes necessary to perform some further operation the result of which would be to sterilise the patient, such as a hysterectomy to prevent uncontrolled haemorrhage, it would be most unwise to proceed without consent unless it can definitely be demonstrated that the preservation of the life or health of the patient requires immediate intervention before consent can be obtained. In such circumstances the procedure would be considered in the unconscious (hence incapacitous) patient’s best interests. Such situations should be rare, as where there is any known risk of hysterectomy the issue should, wherever practicable, have been discussed with the woman before intervention, and her consent or refusal 379

10.2  Sterilisation and Contraception established in advance. It should not be presumed that a patient would have consented to such a step.

Informed consent 10.3 Over the last two decades, social and ethical developments in the relationship between doctors and patients have moved away from a model of consent based upon medical paternalism to one which focuses on the autonomy of the patient. The law treats patients so far as possible as adults who are capable of understanding that medical treatment is uncertain of success and may involve risks, accepting responsibility for the taking of risks affecting their own lives, and living with the consequences of their choices. A doctor is under a duty to take reasonable care to ensure that the patient is aware of the reasonable options for treatment, the potential benefits, outcomes, material risks, burdens and side effects of each option, including the option of having no treatment. A material risk is one to which a reasonable person in the patient’s position would be likely to attach significance, or to which the doctor is or should reasonably be aware that the particular patient would be likely to attach significance.1 Most forms of male and female sterilisation have a small failure rate.2 It is a requirement of the duty of care for patients to be counselled as to the risks of the sterilisation not being effective and as to any interim precautions that ought to be taken until confirmatory tests or examinations have been performed. Failure to comply with such a practice will render the medical practitioner liable in an action for negligence should the patient consent to what turns out to be an ineffective sterilisation in reliance on defective counselling. Damages awarded may include compensation for the pregnancy and birth but will not include damages for the maintenance of the child save for the additional costs of bringing up a disabled child.3 NHS Trusts usually have standard information forms for male and female sterilisation, but practitioners need to be aware that the provision of a form, or a consent form referring to it, does not necessarily amount to proof that the duty in relation to counselling has been fulfilled.4 1

Montgomery v Lanarkshire Health Board [2015] UKSC 11, [2015] 2 WLR 768; see further detailed discussion in Chapter 1: Consent – General. 2 Clinical Guidance from the Faculty of Sexual & Reproductive Healthcare, Male and Female Sterilisation, September 2014, suggests a failure rate for female sterilisation by Filshie clips as 2 to 3:1,000 at ten years, and a late failure rate of 1:2,000 for male vasectomies. 3 MacFarlane v Tayside Health Board [2000] 2 AC 59, [1999] 3 WLR 1301 restricted the right to recovery of maintenance of a child. In Parkinson v St James and Seacroft University Hospital NHS Trust [2001] EWCA Civ 530, [2002] QB 266, the Court of Appeal held that in the case of a child who was born disabled, the basic costs of the child’s maintenance were not a recoverable loss, but damages representing the special needs and care costs attributable to the disability were recoverable. MacFarlane was also considered in Rees v Darlington Memorial Hospital NHS Trust [2004] 1 AC 309, [2003] 3 WLR 1091, where a disabled mother who gave birth to a healthy child following a negligently performed sterilisation was held not to be entitled to recover the extra costs of child care attributable to her disability. However, a conventional award of £15,000 was made to mark the legal wrong and to reflect loss of the opportunity to limit the size of her family and to live life as planned. That award was in addition to any compensatory award related to the pregnancy and birth. In Rees the House of Lords left open the question of whether Parkinson was correctly decided. 4 See Chapter 1: Consent – General, para 1.11.

380

Sterilisation and Contraception 10.5

The role of partner/spouse 10.4 As in other areas of patient care, there is no duty in law to obtain the consent of the spouse or partner of the patient who is to be sterilised. Further, the consent of the partner or spouse does not amount to legal authority for the procedure, even if the patient is unconscious or otherwise unable to give consent at the time. However, where the patient is accompanied to consultations by the partner or spouse and the patient wishes him or her to be included in the counselling and to participate in the decision, then the medical practitioner may be found to owe a duty of care to the partner or spouse, as well as the patient. Family planning is, after all, a family matter, with consequences for persons other than the patient, and is an area where many patients will wish to share the decision-making process. On the other hand, there is no duty on the part of the medical practitioner to include the spouse or partner in the decisionmaking process, unless the patient wishes this to happen. A third party has no right to prevent a sterilisation procedure taking place any more than a termination of pregnancy.1 1

Paton v British Pregnancy Advisory Service Trustees [1979] QB 276, [1978] 3 WLR 687, [1978] 2 All ER 987; Paton v UK (1980) 3 EHRR 408; and Re SB (A Patient) (Capacity to Consent to Termination) [2013] EWHC 1417 (COP), (2013) 133 BMLR 110.

Procedure 10.5 While in principle there is no legal distinction between the requirements for obtaining consent to a sterilisation and the requirements for any other form of medical treatment, it would be prudent in the interests of both the patient and the medical practitioner to ensure not only that a proper counselling process has taken place, but that there is proof available of this, in a form which also provides a reminder to the patient of the advice and a corresponding entry in the clinical notes. Detailed information leaflets explaining and illustrating the relevant information can also be of assistance in the consent process. Therefore, the following steps should be considered: ●● ●●

●● ●● ●●

Adequate time – well in advance of the proposed procedure (to allow those giving consent to reflect upon what they have been told and ask further questions) – should be allowed for counselling. The counselling should be performed by the medical practitioner who is to perform the procedure or a practitioner who is in possession of adequate knowledge of the available techniques, the proposed method, the general outcome figures for that procedure as compared with all others and, where it is known, the outcome rates of the practitioner who is to perform the operation. While much information may be provided in written form, it is unwise to rely solely on printed leaflets without ensuring by discussion that the patient understands the information provided. The patient may be encouraged to involve the spouse or partner in the discussion, but the decision whether to do so is the patient’s not the medical practitioner’s. If possible, the patient should be provided with a written summary of the information provided in counselling. While general information might be in the form of a leaflet or by reference to an appropriate 381

10.5  Sterilisation and Contraception

●●

website, information specific to the patient will need to be in a letter or similar form. The medical practitioner should keep a record of the advice given. While the record of routine information might be reduced to a common printed form, it is more convincing proof of what has been said if it is recorded at the time of the consultation (in the clinical notes) and is specific to the patient.

C ADULTS Capacitous adults 10.6

The general principles are dealt with above.

Adults lacking capacity to consent Capacity 10.7 Sterilisation is intended to be irreversible.1 It removes the choice to become a genetic parent, and – depending upon social circumstances – to parent a child and to found a family.2 It is an interference with a person’s autonomy of the utmost gravity. Therefore, although there is a presumption that patients have capacity, unless the contrary is shown, it is incumbent on those proposing to perform a sterilisation procedure to undertake a careful assessment of capacity. Doctors who proceed on an assumption of capacity risk a subsequent retrospective finding that their patient lacked the relevant capacity. Contraception, though not irreversible, has for the period that it is in use a similar impact on a person’s autonomy and, in many cases, a decision that it is in the best interests of a person who lacks capacity to be provided with contraception, once made, is unlikely to be revisited or reversed. The principles involved in determining whether an adult has the mental capacity to consent to a sterilisation procedure or to contraception are no different from those applicable to any other form of medical treatment, though of course those principles will need to the calibrated to the decision being considered.3 A person is not to be treated as lacking capacity to decide whether or not to undergo sterilisation or to use contraception unless all practicable steps to help them make the decision have been taken without success.4 For patients with learning disabilities, this may involve education sessions with visual aids or other means of communication tailored specifically to their individual needs. Such is the importance of the capacity assessment in such cases that in The Mental Health Trust v DD – in which DD was resistant to any involvement with statutory services – Cobb J, having concluded that she lacked capacity to consent to undergo an assessment of her capacity to decide on contraception, authorised forced entry into her home and taking her, by force if necessary, to a Health Centre for education and assessment.5 In accordance with the Mental Capacity Act Code of Practice § 4.57, it was not proposed that she should be forced to cooperate with the assessment itself. 382

Sterilisation and Contraception 10.7 If a person does lack capacity to make decisions about sterilisation or contraception, the prospects and potential timescale of regaining capacity must be considered as a feature of the best interests assessment.6 If capacity may be regained in the foreseeable future, sterilisation is unlikely to be an appropriate step in the best interests of the patient. The application of the ‘functional test’ in ss 2–3 of the Mental Capacity Act 2005 (‘MCA’) requires identification of the ‘information relevant to the decision’.7 This includes information about the reasonably foreseeable consequences of deciding one way or another.8 A sterilisation procedure may be proposed for adults who lack capacity in widely differing circumstances. For example, a form of sterilisation may be therapeutic, where it is the only practical way of controlling excessive and distressing menstrual periods;9 or its primary purpose may be contraceptive, to prevent pregnancy in a person to whom it would be an incomprehensible and frightening burden. What information is relevant to the decision will inevitably depend upon the circumstances of the individual case, because in all cases the determination of capacity is decision-specific.10 One aspect of the ‘relevant information’ requires particular mention. If the purpose of sterilisation is in whole or in part as a contraceptive treatment, it is likely that the relevant information will include not only sterilisation but alternative contraceptive treatments. Theoretically, the ‘reasonably foreseeable consequences’ of not undergoing contraceptive treatment will include conception, a birth and the parenting of a child with all of its practical ramifications. However, in A Local Authority v Mrs A and Mr A,11 which involved contraception short of sterilisation, Bodey J determined that ‘the relevant information’ did not extend to the realities of parenthood or the factspecific demands of caring for a particular child not yet conceived, but was restricted to the immediate ‘proximate’ medical issues of contraception. Those issues were: ●● ●● ●● ●● ●● ●●

the reason for contraception and what it does (which includes the likelihood of pregnancy if it is not in use during sexual intercourse); the types available and how each is used; the advantages and disadvantages of each type; the possible side effects of each and how they can be dealt with; how easily each type can be changed; and the generally accepted effectiveness of each.

The Mental Health Trust v DD involved an application, first, for temporary contraception to be administered to a woman with autism and learning difficulties following a caesarean section,12 and, thereafter, for her forcible therapeutic sterilisation.13 Cobb J followed the approach in A Local Authority v Mrs A and Mr A in considering that the relevant information for contraception and sterilisation respectively was restricted to its ‘proximate’ medical issues, which, in the case of sterilisation, excluded the realities of parenthood. In both instances, the judge adapted the relevant information to the particular facts of the case, to include as part of the relevant information the serious risks to the woman’s physical and mental health that pregnancy and delivery would bring.14 As with all other medical treatments, a person will not be treated as lacking capacity to make the requisite decision merely because they have made, or may make, an unwise decision.15 383

10.7  Sterilisation and Contraception 1 In A NHS Trust v DE [2013] EWHC 2562 (Fam), [2013] 2 FCR 343, Eleanor King J declined to factor in to her decision the fact that there was a 44% chance that a vasectomy could be reversed, particularly as it would only be in exceptional cases that a reversal procedure would be countenanced on the NHS, see para 61. 2 The right to choose whether to become a genetic parent is one aspect of a patient’s right to respect to private life under Article 8 of the ECHR: see Dickson v UK (2008) 46 IR 41, Evans v UK [2006] All ER D 82 (Mar), and A NHS Trust v DE [2013] EWHC 2562 (Fam), [2013] FCR 343. Article 12 of the ECHR – the right to marry and to found a family – does not contain a free-standing right to found a family in the absence of marriage: The Mental Health Trust v DD [2015] EWCOP 4 at para 100. 3 See Chapter 2: Consent & Capacity – Adults, especially para 2.1, above. 4 See s 1(3) of the MCA. 5 [2014] EWCOP 13, (2015) 142 BMLR 156 at para 36. 6 Although s 4(3) of the MCA specifically requires the decision-maker to consider the probabilities of whether and when a person will recover capacity, a realistic prospect of doing so which does not meet that threshold is likely to amount to one of the relevant circumstances to be considered under s 4(2). 7 MCA, s 3(1)(a)–(c). 8 MCA, s 3(4). 9 See, eg University Hospitals of Derby and Burton NHS Foundation Trust v J [2019] EWCOP 16, [2019] COPLR 317, in which Williams J at para 43 expressed the view that it was ‘profoundly regrettable’ that it had taken several years for the relevant professionals to make an application for the court to authorise therapeutic hysterectomy and bilateral salpingo-oopherectomy, in circumstances where J, who had a severe learning disability, suffered debilitating and distressing difficulties as a result of her menstrual cycle. The judge emphasised that ‘the true welfare of the particular individual … must not be obscured by other considerations, which might be fundamental to the vast majority of women but which are displaced by other considerations for that individual.’ 10 See York City Council v C [2013] EWCA Civ 478, [2014] Fam 10; A Local Authority v JB [2021] UKSC 52. 11 [2011] Fam 61 at para 63–64. 12 [2014] EWCOP 13, (2015) 142 BMLR 156. 13 [2015] EWCOP 4. 14 [2014] EWCOP 13, (2015) 142 BMLR 156 at para 17 and [2015] EWCOP 4 at para 66. 15 See eg A Local Authority v AB, SB [2020] EWCOP 32, in which HHJ Richardson, in finding that SB had capacity to make decisions about contraception, commented at para 57 that the consequences that had in the past arisen as a result of the weight that SB attached to the knowledge that her previous pregnancies and terminations had arisen from not using effective contraception were ‘a quintessential example of an unwise decision’.

Best interests 10.8 Where a patient lacks the mental capacity to consent to sterilisation it will be lawful for the operation to be performed if it is in the patient’s best interests.1 The same applies to the provision of medical forms of contraception. In respect of incapacitous adults, the patient’s best interests fall to be determined applying the principles in s 1(5), (6) and s 4 of the MCA. Whilst it is difficult to see why any application for an order authorising sterilisation of or contraception for an adult would now be brought under the inherent jurisdiction rather than the MCA, if it were, the same principles should apply in the application of the best interests test. In Re B (A Minor) (Wardship: Sterilisation), when considering whether a 17-year-old ward of court should be sterilised to prevent pregnancy, Lord Bridge discouraged distinctions between therapeutic and non-therapeutic sterilisations as descending into arid distinctions which deflect from the true issue which was where the ward’s best interests lay.2

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Sterilisation and Contraception 10.8 How the patient’s best interests are to be judged is discussed in detail in Chapter 3 above, to which reference should be made: ●● ●● ●● ●● ●●

‘Best interests’ encompass medical, social, psychological and all other welfare issues. The purpose of the best interests test is to consider matters from the patient’s point of view.3 Although more than one choice of treatment may be reasonable, only one can be in the patient’s best interests.4 The court is not tied to any clinical assessment of what is in the patient’s best interests and should reach its own conclusion on the evidence before it.5 So far as reasonably practicable, the patient must be permitted and encouraged to participate as fully as possible in any decision affecting them.6

The patient’s subjective wishes and feelings about the treatment must be taken into account7 and will always be a significant factor to which the court must pay close regard. The MCA emphasises the need to see the patient as an individual with their own values, likes and dislikes, and to consider their best interests in an holistic way.8 The weight to be attached to those views will always be casespecific and fact-specific,9 and may be determinative.10 In conducting the best interests assessment, the court must ‘have regard’ to whether the purpose for which the proposed sterilisation or contraception is needed can be ‘as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action’.11 The patient’s rights and freedoms must be viewed in a wider context than just focusing on the nature of the medical procedure itself. Thus, although achieving contraception through sterilisation may be the most restrictive option in medical terms, it may not be the most restrictive option overall.12 Furthermore, as only ‘regard’ must be had,13 the decision-maker can opt for an act which is not the least restrictive of the patient if it is in the patient’s best interests.14 Sterilisation or contraception will directly interfere with the patient’s rights under Art 8 of the ECHR (the right to respect for private and family life of the patient) – and also with the Art 8 rights of any partner. It follows that the court can only order sterilisation or the provision of contraception if it is satisfied that it is necessary and in accordance with the law for the protection of the patient’s health.15 A best interests assessment, properly conducted under English law in accordance with established principles, is fully compliant with the ECHR. The determination of ‘best interests’ under s 4 of the MCA is a wide enough test to encompass all relevant factors in Art 8 of the ECHR.16 If the patient’s rights under Art 12 of the ECHR are engaged (the right to marry and found a family),17 any interference with the right is only unlawful if arbitrary and disproportionate.18 It therefore is unlikely to add any protection to the patient over and above Art 8. 1 2 3 4 5 6 7

Re F (Mental Patient: Sterilisation) [1990] 2 AC 1. [1988] AC 199 at 205C. Aintree University Hospitals NHS Foundation Trust v James [2014] AC 591 at para 45. Re S (Adult Patient: Sterilisation) [2001] Fam 15. Trust A and Trust B v H (An Adult Patient) [2006] EWHC 1230. MCA, s 4(4). In accordance with MCA, s 4(6).

385

10.8  Sterilisation and Contraception 8 9 10 11 12 13 14 15 16 17 18

Sheffield Teaching Hospital NHS Foundation Trust v TH [2014] EWCOP 4, Hayden J, paras 36, 55 and 56. ITW v Z [2009] EWHC 2525 (Fam) per Munby J, para 35. As in Wye Valley NHS Trust v Mr B [2015] EWCOP 60, [2015] COPLR 843. See MCA, s 1(6). The Mental Health Trust v DD [2015] EWCOP 4, Cobb J, para 98, where sterilisation was the most restrictive contraceptive option but the least restrictive option in relation to the patient’s private life. The principle in MCA, s 1(6). C v A Local Authority [2011] EWHC 1539 (Admin) per Ryder J, para 61. Article 8(2) ECHR and The Mental Health Trust v DD [2015] EWCOP 4, Cobb J, para 83; A Local Authority v P [2018] EWCOP 10 at para 40. In re M [2012] 1 WLR 1653, Baker J, paras 86–96. The limits of Art 12 of the ECHR are poorly defined. Article 12 does not contain a free standing right to found a family in the absence of marriage: The Mental Health Trust v DD [2015] EWCOP 4 at para 100. O’Donoghue v UK [2011] 1 FLR 1307 at para 84.

General application of ‘best interests’ principle in sterilisation and contraception cases 10.9 While every case will obviously turn on its own facts, reference can be made to the cases on sterilisation that have been before the courts to illustrate the considerations that will be taken into account in deciding on the patient’s best interests, many of which will also apply to cases on contraception.1 It is suggested that the following factors are among those which need to be considered. 1 [1] In re D (A Minor) (Wardship: Sterilisation) [1976] Fam 185; [2] Re B (a Minor) (Wardship: Sterilisation) [1988] AC 199; [3] Re F (Mental Patient: Sterilisation) [1990] 2 AC 1, 2; [4] Re E (A Minor) (Medical Treatment) [1991] 2 FLR 585; [5] Re GF (Medical Treatment) [1992] 1 FLR 293; [6] Re W [1993] 1 FLR 381; [7] Re LC (Medical Treatment: Sterilisation) [1997] 2 FLR 258; [8] Re X (Adult Sterilisation) [1998] 2 FLR 1124; [9] Re S (Adult Sterilisation) [1998] 1 FLR 944; [10] Re X (Adult Sterilisation) [1998] 2 FLR 1124; [11] Re ZM and OS (Sterilisation: Patient’s Best Interests) [2000] 1 FLR 523; [12] Re A (Medical Treatment: Male Sterilisation) [2000] 1 FLR 549, CA; [13] A NHS Trust v DE [2013] EWHC 2562 (Fam); [2013] FCR 343; [14] A Local Authority v K (by the Official Solicitor) [2013] EWHC 242 (COP), [2014] 1 FCR 209; [15] The Mental Health Trust v DD [2015] EWCOP 4; [16] Cambridge University Hospitals NHS Foundation Trust v BF [2016] EWCOP 26, [2016] COPLR 411; [17] University Hospitals of Derby and Burton NHS Foundation Trust v J [2019] EWCOP 16, [2019] COPLR 317; and [18] University Hospital Coventry and Warwickshire NHS Trust v K, Mrs W [2020] EWCOP 31, [2020] COPLR 839.

The prospect of attaining or recovering capacity for a relevant decision 10.10 Sterilisation may be proposed for an incapacitous adult for a number of reasons. If it is intended to prevent pregnancy of the patient or their partner, it will usually be a proposal which arises in the context of a complex social background with the involvement of health and social services. The patient’s capacity to take decisions in other areas is likely to require consideration; pregnancy will only occur if the person has contact with a partner. Even then, it will only occur if the person engages in sexual relations. If the person lacks capacity to make decisions about contact, steps may be taken to prevent situations arising where pregnancy may occur if this is in their best interests. If the person lacks capacity to decide to engage in sexual relations, there will 386

Sterilisation and Contraception 10.11 usually be a safeguarding obligation to ensure there is no opportunity for them to do so.1 In such circumstances, provided that those safeguarding steps are in the person’s best interests, it is most unlikely that the court would authorise sterilisation, although reversible contraception may be considered as part of a wider safeguarding package. In An NHS Trust v DE,2 the court authorised a vasectomy in a male patient, who had profound learning difficulties, after a skilled programme of education enabled him to acquire the capacity to consent to sexual relations.3 For ten years DE had had a girlfriend, PQ, who also suffered from learning disabilities. Their relationship was very important to him. When his girlfriend became pregnant and gave birth to his child, a number of agencies became involved and it was determined that DE did not have capacity to consent to sexual intercourse. A regime of supervision of the pair was put into place but the resulting stress broke up their relationship and caused a major setback in the significant strides DE had made towards increased independence. DE’s clinicians, parents and carers concluded that it would be in his best interests to undergo a vasectomy to allow removal of the restrictions in his relationship with his girlfriend and an application was made to the Court of Protection. The application was adjourned to allow DE to receive counselling and education about sexual relations, and he was subsequently found to have achieved capacity to consent to sexual relations. On the final application, the court authorised a vasectomy as being in DE’s best interests, concluding that his relationship with PQ should be supported and that one important way of doing that was by facilitating a sexual relationship. If there is a prospect of improvement – certainly, if there is a chance that a patient will gain or regain the capacity to consent to treatment – then it would be highly unlikely that the court would find sterilisation in their best interests.4 1

2 3 4

The test for capacity to decide to engage in sexual relations is decision-specific and must focus on the actual decision which falls to be made (which may be person-specific or not, depending on the circumstances): A Local Authority v JB [2021] UKSC 52. A decision cannot be made on a person’s behalf consenting to sexual relations: s 27 of the MCA. If either partner lacks the capacity to consent to sexual relations, it raises issues over whether the partner commits a criminal offence under ss 30–33 of the Sexual Offences Act 2003, from which it is the court’s duty acting in the person’s best interests to protect them: see eg Westminster City Council v C [2008] EWCA Civ 198, [2009] Fam 11, per Thorpe LJ at para 32. See also Secretary of State for Justice v A Local Authority [2021] EWCA Civ 1527 in which the Court of Appeal held that it was unlawful for a local authority care plan to make provision for a service user to have visits to a paid sex worker. For an illuminating and interesting critique of the decision see David Lock QC’s post on LinkedIn from 22 October 2021 at bit.ly/3pWlXDX. [2013] EWHC 2562 (Fam), [2013] FCR 343. This was how the test was framed prior to the Court of Appeal’s decision in A Local Authority v JB [2020] EWCA Civ 735, [2020] Fam 37, confirmed by the Supreme Court in A Local Authority v JB [2021] UKSC 52. Re D (A Minor) (Wardship: Sterilisation) [1976] Fam 185 at 195. While this case concerned a child, there is no reason why the factors considered would not be relevant in the case of an adult.

The risk of sexual contact 10.11 Many people with disabilities will be sheltered from the chance of sexual contact for their own protection and that of other people they may meet in residential homes and day centres, whether or not they are capable of reproduction. Others will have evinced no or little interest in such contact. 387

10.11  Sterilisation and Contraception Thus one of the reasons in Re D (A Minor) (Wardship: Sterilisation) for the declaration being refused was that the patient: ‘had as yet shown no interest in the opposite sex, and … her opportunities for promiscuity, if she were so minded, were virtually non-existent, as her mother never leaves her side and she is never allowed out alone.’1 Similarly, in A Local Authority v K,2 the court did not authorise sterilisation of a 21-year-old with Down’s syndrome and learning disabilities, where she was not currently sexually active, did not currently show interest in sexual relations, was not seeking a sexual relationship, was well-supervised at home and at college, and was working with the community nursing learning disability team to help her to reduce her vulnerability around others. As the judge put it: ‘Plainly risk management is better than invasive treatment, it is less restrictive.’3 In Re B (A Minor) (Wardship: Sterilisation), on the other hand, the patient was showing signs of sexual awareness and drive, and her carers’ philosophy was to allow her as much freedom as was consistent with her disability.4 Similarly, in Re F (Mental Patient: Sterilisation) the patient had benefited from being given a greater degree of freedom of movement within the hospital grounds and had already formed an attachment with a fellow patient which was not thought to be harmful.5 In Re W,6 the presence of such a risk influenced the court in favour of the declaration. In contrast, the possibility of a risk arising in the future may not be sufficient.7 The risk may need to be ‘identifiable’ as opposed to ‘speculative’.8 1 2 3 4 5 6 7 8

[1976] Fam 185 at 194. [2014] 1 FCR 209. Ibid, para 33. [1988] AC 199 at 208. [1990] 2 AC 1 at 9. [1993] 1 FLR 381. Re LC (Medical Treatment: Sterilisation) [1997] 2 FLR 258; Re S (Adult Sterilisation) [1998] 1 FLR 944 at 949, cf Re X (Adult Sterilisation) [1998] 2 FLR 1124 at 1126–1127. Re S (Adult Sterilisation) [1998] 1 FLR 944 at 949.

The availability of other methods of contraception 10.12 This is a central consideration: the sensitivity concerning sterilisation is because of its irreversibility; if reversible methods of preventing conception can reliably be used, they should be.1 All practical contraceptive methods should be considered before sterilisation is canvassed. In Re D the judge found that other methods could be used, if contraception was necessary.2 In Re B3 and in Re F,4 by contrast, an oral contraceptive had been found to produce undesirable side-effects. In Re ZM and OS,5 the court considered the case of Z, a 19-year-old with Down’s syndrome. She had menstrual periods that were heavy, painful and irregular. There was medical disagreement about what was in Z’s best interests. Bennett J determined that a ‘Mirena’ contraceptive coil was not sufficient to achieve the aim of stopping Z’s troubling periods and that it was in her best interests to undergo a laparoscopic subtotal hysterectomy.

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Sterilisation and Contraception 10.13 In contrast, in Re S,6 the Court of Appeal overturned the first instance judge’s determination that a subtotal hysterectomy should be performed on a 29-yearold woman with severe learning disabilities. The Court of Appeal decided that the judge had failed to give sufficient weight to the unanimous medical opinion which favoured using the less invasive ‘Mirena’ coil. While S’s mother favoured hysterectomy, the Court of Appeal held – applying a true ‘best interests’ test7 – that it was appropriate first to undertake the less invasive coil procedure and only if it failed would it be appropriate for the matter to be returned to court to consider whether hysterectomy should be undertaken.8 Where a patient is developing a relationship of significance, consideration should be given to the capacity and maturity of their partner. Thus, even if it is felt that the patient does not have the ability adequately to ensure birth control, if their partner can adequately ensure that contraception is used then there is no current need for sterilisation. There may be particular reasons why, on the facts of an individual case, despite the theoretical availability of alternative forms of reversible contraception their use may not be in the patient’s best interests. The Mental Health Trust v DD9 is an example of such a case. DD was an autistic patient with learning disabilities, in a relationship with a partner who also had learning disabilities. Both were fiercely resistant to the involvement of statutory services in their lives. DD’s dominant wish was to be left alone to enjoy a ‘normal’ life free from intrusion by health and social services. Because of her history of concealing pregnancies and the serious risks posed to her life by a further pregnancy, reliable contraception was essential, but neither she nor her partner would voluntarily use reversible methods of contraception. There was a high risk she would remove (or have removed) any contraceptive implant or intrauterine contraceptive device inserted against her will. The court authorised forcible sterilisation despite her opposition, as it was the only reliable form of contraception which would allow her to lead a life free from a high level of intrusion by statutory services. 1 For instance, in The Mental Health Trust v DD [2015] EWCOP 4, Cobb J said: ‘Given that an IUD/IUS has a low failure rate as a long-term contraceptive, and is generally effective to prevent pregnancy (as indeed I discussed in A Local Authority v K [2013] EWHC 242 (COP), [2014] 1 FCR 209), it will be a rare case, in my view, in which the more radical alternative of sterilisation will be found to be in the best interests of an incapacitous woman of child-bearing age. This is particularly so given the court’s duty to have regard, when considering the best interests of the vulnerable woman, to the less restrictive option under the 2005 Act …’ (para 11). 2 [1976] Fam 185 at 195. 3 [1988] AC 199 at 207. 4 [1990] 2 AC 1 at 10. 5 Re Z (Medical Treatment: Hysterectomy) [2000] 1 FLR 523, [2000] 1 FCR 274. 6 Re S (Sterilisation) [2000] 2 FLR 389. 7 Discussed in Chapter 3: Deciding for Others – Adults. 8 Re S (Sterilisation) [2000] 2 FLR 389 at 401 per Butler-Sloss P. 9 See n1 above.

The need for counselling and education 10.13 Expert evidence was adduced in Re A1 to the effect that sterilisation on its own was not a solution to the problems involved in allowing a patient with learning disabilities to enjoy sexual relations and that there was a need for

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10.13  Sterilisation and Contraception counselling and education which it was the duty of local services to provide. The Court of Appeal commented that to expect such facilities to be available might be unrealistic. However, in CH v A Metropolitan Council,2 substantial damages were awarded for a local authority’s failure to provide a man with sex education which he had been assessed as needing, and which ultimately allowed him to attain capacity to have sexual relations with his wife. The consequence of the local authority’s delay in providing the education was to prevent their having conjugal relations, the local authority having told CH’s wife that this would be a criminal offence. Both husband and wife pursued successful claims for damages under the Human Rights Act 1998. The court observed that the provision of sex education was also required pursuant to s 1(3) of the MCA. This reflects a more modern approach, and one in line with the requirement under the ethos of the MCA to promote individual autonomy as far as possible. It is likely that in future, it will be considered a denial of the right of the patient with learning disabilities to lead as full and rewarding a life as possible to claim that sterilisation on its own is a solution to the problems involved in this type of case. 1 2

Re A (Medical Treatment: Male Sterilisation) [2000] 1 FLR 549, CA; sub nom Re A (Male Sterilisation). [2017] EWCOP 12.

The risks of pregnancy 10.14 In some patients with mental disabilities the experience of pregnancy would be disastrous because of a lack of understanding of the process or its consequences, or an inability to care for a child with consequent adverse effects on the patient’s mental and physical condition.1 In others, particular risks to the patient’s health or life associated with pregnancy and delivery may prove to be the magnetic factor in favour of sterilisation.2 1 For example, T v T [1988] Fam 52, where the patient had already become pregnant and required a termination as well as sterilisation; Re B (A Minor) (Wardship: Sterilisation) [1988] AC 199 at 208–209; Re F (Mental Patient: Sterilisation) [1990] 2 AC 1 at 10: ‘For F to become pregnant would be a disaster … She has a much diminished ability to cope with the problems of pregnancy and would not be able to cope with labour or looking after the child once born. Professor B … used the word “catastrophic’’ to describe the psychiatric consequences of her having a child.’ 2 For example, in The Mental Health Trust v DD [2015] EWCOP 4, the court concluded that the risk of uterine rupture or haemorrhage due to placental complications posed such a high risk to DD’s life that sterilisation – the option which most effectively reduced the prospects of this – should be preferred.

Freedom of association and reduction of intrusion by statutory services 10.15 In some cases, the patient can be given more freedom to associate with others and form friendships which might be dangerous if there was a risk of pregnancy. The patient in Re F1 was clearly enjoying her relationship with a man with whom she could not be safely left on her own because the encounters risked a catastrophic pregnancy.

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Sterilisation and Contraception 10.17 In The Mental Health Trust v DD,2 the court considered that DD’s ‘rights and freedoms’ within the principle of least restriction in s 1(6) of the MCA should be viewed in a wider context than just the medical procedure of sterilisation itself. Her ‘rights and freedoms’ included the clear right to respect for her privacy. Sterilisation was much more likely to free her from further intrusion into her ‘private life’ from professionals, whereas the insertion of a coil (carrying with it a greater need for monitoring and in due course replacement/removal) would not. In this wider sense, sterilisation was the less restrictive of the two principal options under consideration and authorised as being in her best interests.3 1 2 3

[1990] 2 AC 1. [2015] EWCOP 4; see also para 10.12 above. See [2015] EWCOP 4, para 98 in particular.

The effect on the standard of care 10.16 The last four decades have seen an increasing awareness of, and concern about, the vulnerability of those who cannot care for themselves, highlighted by incidences of sexual abuse by carers and others. It is in this context that the safeguarding measures taken to protect vulnerable people have become increasingly rigorous. It is sometimes argued that the knowledge that a patient is incapable of reproduction will cause the regime of supervision and care to be slackened, even when their interests would still require a high level of protection from exploitation and other dangers, or, alternatively, that those who seek to exploit a vulnerable woman may be emboldened if they are aware that she cannot become pregnant. In The Hospital Trust v Miss V a young woman with a severe learning disability and no capacity to consent to sexual relations had become pregnant and had a baby. The Hospital Trust sought thereafter to provide her with contraception as part of a safeguarding package.1 Cobb J was unpersuaded, in that case, by the arguments that if the patient were provided with contraceptive patches she would potentially be exposed to a greater risk of sexual exploitation, if the sexual predator knew that she had contraceptive protection, and that there would be a greater likelihood that any further abuse would go undetected.2 In An NHS Foundation Trust v AB3 MacDonald J ruled that, notwithstanding the proposed safeguarding plan to prevent further sexual exploitation of AB, a young woman with moderate learning disability who lacked capacity to consent to sexual relations, there remained an appreciable risk of a future unplanned pregnancy occurring such that it was in AB’s best interests to have an IUD fitted, although it does not appear from the judgment that such arguments were put forward in that case. 1 2 3

[2017] EWCOP 20, [2018] COPLR 56. Ibid, para 29. [2019] EWCOP 45, para 31.

Male patients 10.17 To date we are aware of only two applications to the court seeking a declaration for the sterilisation of a male. 391

10.17  Sterilisation and Contraception The first, Re A (Medical Treatment: Male Sterilisation),1 was refused as not being in his best interests, although there was evidence that he was sexually aware and might proceed to sexual intercourse if not prevented from doing so.2 However, there was no immediate risk of his being allowed to have casual intercourse and he enjoyed no stable relationship in which this was likely to be permitted. The risks that a disabled partner might become impregnated were not taken into account as being relevant.3 Secondly, in An NHS Trust v DE,4 the court authorised a vasectomy for a male patient with profound learning difficulties. The longstanding relationship between DE and his girlfriend, PQ, was of fundamental importance to him. PQ had given birth to his child. The resulting interventions of various agencies led to significant restrictions on their ability to associate with each other. Following a programme of education, DE was reassessed as having capacity to consent to sexual relations. The court considered that a vasectomy was in DE’s best interests because: ●● ●● ●● ●● ●● ●●

his relationship with PQ was enduring and loving, and was important to him, he wanted to resume sexual relations; he had a genuine and settled desire not to have any more children; a vasectomy would relieve the substantial anxiety of his supportive parents, of which he was conscious; it would allow his relationship with PQ to be supported by them; and the relationship could be conducted with a less restrictive level of supervision.

1 [2000] 1 FLR 549, CA. 2 Mr James Munby QC commented in his chapter in Principles of Medical Law (Grubb, OUP, 2004), p 292 (fn 535) that this scarcity of cases is: ‘A revealing insight into societal attitudes to gender, sexuality and contraception.’ 3 This might no longer be the case following the conclusion of the Supreme Court in A Local Authority v JB [2021] UKSC 52 at para 92, endorsing that of the Court of Appeal that: ‘as a public authority, the Court of Protection has an obligation under section 6 of the Human Rights Act 1998 not to act in a way which is incompatible with a right under the European Convention of Human Rights, as set out in Schedule 1 to the Act. Within the court, that obligation usually arises when considering the human rights of P, but it also extends to the rights of others.’ 4 [2013] EWHC 2562 (Fam), [2013] FCR 343. See Renu Barton-Hanson’s article Sterilization of men with intellectual disabilities: Whose best interest is it anyway? Medical Law International Vol 15(1),49–73 (March 2015): https://doi.org/10.1177/0968533215592444.

The immediacy of the risks 10.18 The court will be slow to grant an order approving of a nontherapeutic sterilisation unless the risks identified as justifying the operation are present risks and not theoretical future risks. Evidence should be adduced which establishes that the condition which it is sought to avoid will in fact occur. For example, in the case of a contraceptive sterilisation, that there is a need for contraception because: ●● ●●

the patient is physically capable of procreation; and the patient is likely to engage in sexual activity, at the present time or in the near future, under circumstances where there is a real danger (as opposed to mere chance) that pregnancy is likely to result.

392

Sterilisation and Contraception 10.20 The cases at first instance establish that there must be a clearly identifiable risk against which sterilisation is the only practicable means of protecting the patient. Thus, declarations have been refused because there was no immediate realistic chance of the patient being allowed to have sexual contact whether or not there was a sterilisation.1 These cases emphasise that a desire to prevent a mentally disabled person having a child is no reason of itself to permit a sterilisation to be performed. 1

Re LC (Medical Treatment: Sterilisation) [1997] 2 FLR 258; Re S (Adult Sterilisation) [1998] 1 FLR 944 at 944; Re A (Medical Treatment: Male Sterilisation) [2000] 1 FLR 549; cf Re X (Adult Sterilisation) [1998] 2 FLR 1124 at 1126–1127; and A Local Authority v K (by the Official Solicitor) [2014] 1 FCR 209.

Covert treatment 10.19 It will usually be appropriate and necessary to discuss with the patient any proposal to provide contraception or, indeed, sterilisation, in a way best suited to their understanding. In A Local Authority v P, however, the patient, a young woman with learning disabilities, had undergone insertion under general anaesthetic of a copper intra-uterine device without her knowledge.1 Several years later, there was a review of whether the IUD should remain in place, and whether P should be told about its presence. Baker J emphasised that covert medical treatment is a serious interference with an individual’s right to respect for private life under Art 8 ECHR and that, in respect of contraception, any proposal to provide it covertly should be the subject of an application to the court for a comprehensive analysis of best interests.2 He concluded that P should not now be told about the IUD’s presence because doing so would be likely to cause harm to her relationships with family and professionals, but that the issue should be kept under active review and that professionals should start planning how future decisions about contraception could be taken in a way that included P and respected her autonomy and human rights.3 1 2 3

[2018] EWCOP 10, [2019] COPLR 44. Ibid, paras 54–56. Ibid, paras 62–63.

Procedure1 10.20 Where it is proposed to perform a sterilisation operation on a patient incapable of consenting to the procedure, there should be the fullest consultation with the carers and any close relatives who have a caring role about the need for the procedure, the circumstances in which the patient lives and the benefits and disadvantages of proceeding. If the proposed procedure is ‘non-therapeutic’, that is, solely for contraceptive purposes, an application to the Court of Protection for its authorisation is mandatory: see para 11 of Practice Guidance (Court of Protection: Serious Medical Treatment).2 This was emphasised by Cobb J in A Local Authority v K, where he also made it clear that referral to the Court of Protection in a case involving non-therapeutic sterilisation of an incapacitous person ‘could and should always be considered at the earliest moment’.3

393

10.20  Sterilisation and Contraception Subject to the limitations in ss 4A, 4B and 6 of the MCA (restraint and deprivation of liberty), and ss 24–26 (advance decisions to refuse treatment), s 5 allows clinicians to undertake medical treatment of patients whom they reasonably believe lack capacity to consent in certain circumstances. If a clinician performs an act in connection with care of treatment of a person, they do not incur any liability in connection with the act – which they would not have incurred if the person had had capacity to consent and had done so – if: ●● ●● ●●

they have taken reasonable steps to establish whether the person lacks capacity in relation to that treatment; they reasonably believe that the person does lack capacity; and they reasonably believe that it is in the person’s best interests to undertake the treatment.

The limitations in ss 4A, 4B and 6 are complex and must be read with care: ●● ●● ●●

the definition of ‘restraint’ is far wider than many clinicians might anticipate; a clinician is only entitled to restrain a patient if it is necessary to prevent harm and a proportionate response to the likelihood and seriousness of that harm; and acts under s 5 which deprive a patient of their liberty (and where the deprivation of liberty is not otherwise authorised by court order or under the DOLS regime) will only be lawful in limited circumstances – life-sustaining treatment or where the clinician reasonably believes it necessary to prevent a serious deterioration in the patient’s condition – and even then, only while a decision is sought from the court.4

1 See Chapter 6: Going to Court. 2 [2020] EWCOP 2, [2020] 1 WLR 641, see: bit.ly/VP-Guide-Jan-20. 3 [2013] EWHC 242 (COP), [2014] 1 FCR 209 at para 36. 4 MCA, s 4B, but note that this exception will be more generous once the proposed amendments to the MCA come into force: see Chapter 5: Restraint and Deprivation of Liberty, paras 5.82 and 5.106.

10.21 If the proposed sterilisation is ‘therapeutic’ for treatment of some physical or mental condition, there is post-MCA judicial guidance about which cases should be brought to court for declarations and orders authorising the sterilisation, as opposed to managed without court involvement.1 The Practice Guidance does not refer expressly to therapeutic procedures that are not for the primary purpose of sterilisation, but there can be little doubt that any procedure that has the effect of sterilising the patient will involve ‘serious interference with the person’s rights under the ECHR’.2 More recently, in University Hospital Coventry and Warwickshire NHS Trust v K, Mrs W, which concerned a young woman with cancer who required urgent treatment that would have the effect of triggering an early menopause and rendering her infertile, Hayden J observed that, notwithstanding the consensus amongst the treating clinicians and K’s mother, the Trust had properly decided that an application to court was required.3 1 The pre-MCA guidance was as follows: in Re GF [1992] 1 FLR 293 it was stated that it was not necessary to apply to court where two medical practitioners were satisfied that a procedure which will sterilise the patient is: (1) necessary for therapeutic purposes, (2) in

394

Sterilisation and Contraception 10.23

2 3

the best interests of the patient, and (3) that there was no practicable, less intrusive means of treating the condition. In Re S (Sterilisation) [2000] 2 FLR 389, the Court of Appeal stressed that if a particular case lies anywhere near the Re GF boundary line, it should be brought to court for a declaration as to the lawfulness of the procedure proposed. Clearly, it will now be insufficient that there are two medical practitioners who are in agreement if there are other relevant professionals, family members or other properly interested persons who disagree. [2020] EWCOP 2, [2020] 1 WLR 641 at para 10, see: bit.ly/VP-Guide-Jan-20. [2020] EWCOP 31, [2020] COPLR 839 at para 11.

10.22 Although each case is necessarily fact-specific, it is suggested that an individual proposing to undertake a therapeutic sterilisation on an incapacitated adult should seek court authorisation where: ●● ●●

●● ●●

there is any dispute over the patient’s capacity to make a decision about the treatment, including the effect of sterilisation; there is any dispute, whether as between the patient and the clinicians, as between the clinicians, or with anybody else caring for the patient, over: –– whether the sterilisation should be performed; or –– whether it is in the patient’s best interests; or –– whether there is any practicable, less intrusive means of treating the condition; there is a real risk that the patient will not co-operate and will require more than transient forcible restraint; there is a real risk that the patient will suffer a deprivation of her liberty which, absent a court order which has the effect of authorising it, would otherwise be unlawful (ie not authorised under s 4B of or Sch A1 to the MCA).

Given the enormity of the impact of a sterilisation, it is suggested that in all but the clearest of cases, court authorisation should be obtained. 10.23 It would be prudent for those making the application to have available the favourable opinion of an independent gynaecological expert and of a psychiatrist specialising in the rehabilitation and care of patients with the relevant mental disorder. The court has power to control the evidence adduced including the discipline and identity of expert witnesses, whether their evidence is to be admitted only in writing and whether they are to attend for cross-examination.1 While the court will have the power to order there to be a single expert, this is unlikely to be desirable in any other than the most clear and undisputed case in this field. The purpose of the matter coming before the court is to ensure that the issues are properly examined in the interests of the patient and the public; there will be a danger of the public perceiving the court as merely rubberstamping the opinion of the appointed expert if this sort of restriction were to gain currency. 1 Court of Protection Rules 2017, Pts 14 and 15. In University Hospitals of Derby and Burton NHS Foundation Trust v J [2019] EWCOP 16, the applicant trust had obtained a second opinion from a very eminent expert, who was subsequently released to advise the Official Solicitor, acting on behalf of J, directly: in this way, the time required for the application to be determined (ultimately by consensus) was significantly shortened without compromise to the quality of the evidence.

395

10.24  Sterilisation and Contraception

D CHILDREN General principle Children with no learning disabilities 10.24 It will obviously be rare for anyone to wish to sterilise a child who is expected to grow up into a mentally competent adult for non-therapeutic or ‘social’ reasons. It is difficult to think of circumstances in which any competent medical practitioner would wish to carry out such an operation or in which a person with parental responsibility would be willing to consent to it. If such a thing were contemplated, the procedures referred to in the next section would have to be considered. On occasion it will be necessary to consider treatment required for compelling therapeutic reasons which will have the side-effect of sterilising the patient. Radiotherapy or surgery in the area of the uterus for cancer are examples. Obviously, the effects of such treatment must be discussed very carefully with those having parental responsibility and, to the extent that is appropriate having regard to the age and maturity of the child, with the patient. Preservation of the ability to have children later, for example through the storage of gametes, will be an important consideration. However, if the treatment is consented to in accordance with the general principles governing authority for treating a child, it may be performed without reference to the courts.

Children with learning disabilities 10.25 Where children with learning disabilities require treatment for therapeutic reasons which will have sterilisation as a side-effect, it may be authorised in the same way as for children without such disabilities. Occasionally it has been thought necessary to propose sterilisation of a child with mental disabilities for the sole purpose of preventing the child becoming pregnant. This is properly to be regarded as an exceptional course of action to propose and one which will be the subject of the closest judicial scrutiny. The first such case to come before the English courts, Re D (A Minor) (Wardship: Sterilisation),1 concerned an 11-year-old girl suffering from Sotos syndrome, whose mother was anxious, with the support of a surgeon, that she should be prevented from having children; the proposal received short shrift. As the case has conditioned much of the approach by the courts to this class of case, it is worth setting out part of the judgment in full: ‘Dr Gordon, however, maintained that provided the parent or parents consented the decision was one made pursuant to the exercise of his clinical judgement and that no interference could be tolerated in his clinical freedom. The other consultants did not agree. Their opinion was that a decision to sterilise a child was not entirely within a doctor’s clinical judgment, save only when sterilisation was the treatment of choice for some disease, as for instance, when in order to treat a child and to ensure her direct physical well-being, it might be necessary to perform a hysterectomy to remove a malignant uterus. Whilst the side effect of such an operation would be to sterilise, the operation would be solely performed for therapeutic purposes. 396

Sterilisation and Contraception 10.25 ‘I entirely accept their opinions. I cannot believe, and the evidence does not warrant the view, that a decision to carry out an operation of this nature performed for non-therapeutic purposes on a minor can be held to be within the doctor’s sole clinical judgement. ‘It is quite clear that once a child is a ward of court no important step in the life of that child can be taken without the consent of the court, and I cannot conceive of a more important step than that which was proposed in this case. ‘A review of the whole of the evidence leads me to the conclusion that in a case of a child of 11 years of age, where the evidence shows that her mental and physical condition and attainments have already improved, and where her future prospects are as yet unpredictable, where the evidence also shows that she is unable as yet to understand and appreciate the implications of this operation and could not give a valid or informed consent, but the likelihood is that in later years she will be able to make her own choice, where, I believe, the frustration and resentment of realising (as she would one day) what had happened could be devastating, an operation of this nature is, in my view, contraindicated. ‘For these, and for the other reasons, to which I have adverted, I have come to the conclusion that this operation is neither medically indicated nor necessary, and that it would not be in D’s best interests for it to be performed.’2 It should be noted that the support of a responsible medical practitioner and of a caring mother advocating the procedure was insufficient to persuade the court to allow it. The sole test was whether the procedure was in the best interests of the child. To the judge, the answer was that the procedure was clearly not in the child’s best interests. In contrast, the House of Lords3 permitted the sterilisation of a 17 year old suffering from a moderate degree of mental handicap and very limited intellectual development, determining that it was in her best interests. The evidence was that she was showing signs of sexual awareness and that pregnancy would have been highly detrimental to her well-being. However, Re D has influenced judges in later cases to place a heavy restriction on how decisions in such cases should be taken. In a speech which was not expressly supported by the other Law Lords, Lord Templeman expressed the view that: ‘sterilisation of a girl under 18 should only be carried out with the leave of a High Court judge. A doctor performing a sterilisation operation with the consent of the parents might still be liable in criminal, civil or professional proceedings. A court exercising the wardship jurisdiction emanating from the Crown is the only authority which is empowered to authorise such a drastic step as sterilisation after a full and informed investigation.’4 This statement cannot be taken literally. It has been since pointed out by Lord Donaldson of Lymington that an operation performed with the consent of the parents on a girl who was not a ward of court would not necessarily be unlawful. However, it laid down a practice which ought to be followed: ‘I think he was combining two propositions. First, he was saying that no such operation ought ever to be undertaken without the court’s approval even if the parents or the child consented and that if such an operation was 397

10.25  Sterilisation and Contraception contemplated the child should be made a ward of court and the leave of the court sought.5 Second, he was saying that, where this was done, the decision was of such difficulty and delicacy that it should be undertaken not only by a High Court judge, but one having special experience.’6 In the same case Lord Griffiths said of Re D (A Minor) (Wardship: Sterilisation) that: ‘it stands as a stark warning of the danger of leaving the decision to sterilise in the hands of those having the immediate care of the woman, even when they genuinely believe that they are acting in her best interests.’7 The position in relation to children who lack capacity to make their own decision is, therefore, that, although a sterilisation operation for non-therapeutic reasons might prove lawful if performed with the consent of a person having parental responsibility, no practitioner or hospital could be advised to proceed without ensuring that the permission of a Family Division judge had been obtained. An application to court will ensure that the rights of the child are respected, and if sterilisation is authorised, that it is a lawful interference with the rights of the child under Arts 3 and 8 of the ECHR and the UN Convention on Rights of the Child. Where the operation is for therapeutic reasons, an application to the court is not necessarily required.8 1 2 3 4 5

6 7 8

[1976] Fam 185 per Heilbron J. Ibid, at 196. Re B (A Minor) (wWardship: Sterilisation) [1988] AC 199. Ibid, at 206–207. It may be that it is unnecessary to make the child a ward of court. As with other treatment decisions, what is required is that the court exercises its inherent jurisdiction: it is not necessarily a wardship jurisdiction and unless there is a need for on-going wardship supervision a simple application under the inherent jurisdiction should be made. Re F (Mental Patient: Sterilisation) [1990] 2 AC 1 at 20. Ibid, at 69, at 54, 56 per Lord Brandon of Oakbrook, at 79 per Lord Goff of Chieveley. Re E (A Minor) (Medical Treatment) [1991] 2 FLR 585; Re GF [1992] 1 FLR 293. An application may be required for other reasons such as there being doubt as to whether the therapeutic procedure is in the child’s best interests, or because of a dispute between clinicians and parents: see Chapter 4: Deciding for Others – Children.

Best interests 10.26 A sterilisation procedure for non-therapeutic reasons, like any other form of treatment, should be carried out only if it is in the best interests of the child. Clearly, such interests must not be assessed by exclusive reference to medical factors, and, indeed, many doctors may feel that they are not well equipped to make the assessment given the psychological and social issues involved. The factors which are taken into account in assessing the best interests of a child are much the same as those for an adult.1 1 See para 10.9ff above; see Chapter 3: Deciding for Others – Adults and Chapter 4: Deciding for Others – Children. See also Re M (Wardship: Sterilisation) [1988] 2 FLR 497, [1988] Fam Law 434; Re P (A Minor) (Wardship: Sterilisation) [1989] 1 FLR 182, [1989] Fam Law 102.

398

Sterilisation and Contraception 10.27

Procedure1 10.27 Where a proposal to sterilise a child is being considered the following steps should be taken. ●●

●●

●●

●●

●●

●●

●●

●●

It must be determined whether the procedure is merely the side-effect of treatment required for therapeutic reasons, for example to treat cancer. If it is, then the usual procedures for obtaining authority to treat a child may be adopted. It is suggested that proposals justified on the ground of the treatment of dysmenorrhoea should be scrutinised with exceptional care to ensure that there is no less radical treatment available pending the child’s attainment of majority. If the prime purpose of the procedure is sterilisation, and the child is not mentally disabled, it is highly unlikely that the procedure could be found to be in the best interests of the patient and careful consideration would need to be given to whether the decision should not be deferred until the child has achieved adulthood. If the child is Gillick competent2 and desires the operation, given the sensitivities described above, an application to the court should be seriously considered before proceeding. If the child is mentally disabled and the proposed procedure is ‘nontherapeutic’, there should be a full discussion with those having parental responsibility. Relevant information should be obtained from social workers and others who may have views on the child’s best interests. Consideration must be given to the possibility of alternative contraceptive measures, particularly where there is a prospect of the child gaining in maturity and understanding, and to whether, even with sterilisation, sexual encounters are likely to occur or be permitted or be in the child’s interests. If it is decided, after discussions, that an operation in childhood for permanent sterilisation would be in the child’s best interests and that it would not be reasonable to wait until adulthood, an application must be made to either the Family Division of the High Court or to the Court of Protection, depending on the age and capacity of the child.3 The application must be supported by evidence from carers and others to explain why an irreversible operation is necessary in the best interests of the child and to describe the consideration and consultation that led to the decision. Ethical, social, moral and welfare considerations will be taken into account, as will emotional, psychological and social benefits and detriments to the patient – for example, the risk that if the patient becomes pregnant or gives birth, she is likely to experience trauma or psychological damage greater than that resulting from sterilisation. The court will, in effect, prepare a balance sheet of the advantages and disadvantages for the patient. Assessment will be made of the likelihood of advantages and disadvantages in fact occurring – for example, the risk that pregnancy will occur.4 Medical evidence will be required in relation to the risks to the patient of not being sterilised and of the operation itself. It can be expected that proceedings will usually involve a thorough adversarial investigation of all possible opinion and of the possible alternatives to sterilisation. All reasonable arguments against sterilisation will be presented and considered. CAFCASS or the Official Solicitor will carry out their own investigations and obtain expert evidence necessary to satisfy themselves that all 399

10.27  Sterilisation and Contraception medical, psychological and social evaluations have been conducted and that all appropriate matters are able to be ventilated before the court. Where the patient is able to express any views, however limited, the patient will be interviewed in private by their representative. 1 See Chapter 6: Going to Court. 2 See Chapter 4: Deciding for Others – Children, paras 4.5–4.8. 3 Ibid. See also, in particular, Re JM (A Child) [2015] EWHC 2832 (Fam), [2016] 2 FLR 235 for the potential need to seek both a specific issue order under s 8 of the Children Act 1989 and declarations under the inherent jurisdiction. 4 Although it relates to procedures concerning adults and caution should be taken in light of the age of these authorities, regard may usefully be had to the short-list of factors referred to in the Practice Note (Official Solicitor: Declaratory Proceedings: Medical and Welfare Decisions for Adults who Lack Capacity) [2006] 2 FLR 373, especially at [17]–[18] and to those referred to in the superseded Practice Note (Official Solicitor: Declaratory Proceedings: Medical and Welfare Decisions for Adults who Lack Capacity) [2001] 2 FLR 158 and Practice Note (Official Solicitor: Sterilisation) [1996] 2 FLR 111.

E CONCLUSION 10.28 The permanent effect of sterilisation highlights the importance of strict compliance with all preoperative protocols. The closest attention must be directed to explanation of all associated risks and alternatives, to issues of capacity where these arise and to all procedural prerequisites. Evidence must be carefully compiled and considered and competing considerations thoroughly weighed having regard to the inherent sensitivities involved. Sterilisation for non-therapeutic reasons is an especially drastic measure and proposals for such intervention are properly to be regarded as an option of final resort demanding involvement of the court and the most meticulous scrutiny.

For updating material and hyperlinks related to this chapter, see www.serjeantsinn.com/news-and-resources/medical-treatment-decisions/

400

Chapter 11

Assisted Reproduction

A B

C D

E F G H I J

K

Introduction 11.1 The components of the regulatory regime  11.2 HFEA 1990  11.3 HFEA 2008  11.4 The European Union Tissues and Cells Directives  11.5 The post-‘Brexit’ position  11.6 SAA 1985  11.7 Directions 11.8 Code of Practice  11.9 Chair’s Letters  11.10 Chief Executive’s Letters  11.12 Guidance Notes/Policies/Manuals  11.13 Licensing regime  11.14 Licences generally (HFEA 1990, s 11 and Sch 2)  11.14 Licence conditions (HFEA 1990, ss 12–15C)  11.15 Consent 11.16 Procedure for giving consent  11.17 Import and export of gametes and embryos  11.19 Adults lacking capacity  11.22 Storage periods  11.23 Extension of storage periods  11.24 Evans – one-party withdrawal of consent pre-embryo transfer  11.25 Consent: other key cases  11.26 Conscientious objection  11.31 Birth mother  11.32 The welfare clause  11.33 Posthumous gamete use  11.34 Preimplantation genetic testing  11.35 Surrogacy 11.41 Counselling and the welfare clause  11.43 Parental Orders  11.46 Reform 11.53 Conclusion 11.54

401

11.1  Assisted Reproduction

A INTRODUCTION 11.1 Matters relating to assisted reproduction can be both highly emotive and high-profile, and there are often strong opinions on how far science and regulation should impact on reproduction. It is a significant challenge for legislation in this area to be sufficiently future-proofed as developments in science, ethics and technology can often outpace legal reform. The Human Fertilisation and Embryology Act 1990 (‘HFEA 1990’) and Surrogacy Arrangements Act 1985 (‘SAA 1985’) were passed after consideration of the report of the Committee of Inquiry into Human Fertilisation and Embryology chaired by Baroness Warnock (‘the Warnock Report’). This report was published in 1984 and considered the social, ethical and legal implications of developments in the field of human reproduction following the birth in 1978 of the first child conceived through in vitro fertilisation (‘IVF’). Lord Bingham of Cornhill in R (Quintavalle) v Secretary of State for Health1 summarised the divergence of views on assisted reproductive issues covered by the HFEA 1990: ‘There is no doubting the sensitivity of the issues. There were those who considered the creation of embryos, and thus of life, in vitro to be either sacrilegious or ethically repugnant and wished to ban such activities altogether. There were others who considered that these new techniques, by offering means of enabling the infertile to have children and increasing knowledge of congenital disease, had the potential to improve the human condition, and this view also did not lack religious and moral arguments to support it. Nor can one doubt the difficulty of legislating against a background of fast-moving medical and scientific development. It is not often that Parliament has to frame legislation apt to apply to developments at the advanced cutting edge of science. ‘The solution recommended and embodied in the 1990 Act was not to ban all creation and subsequent use of live human embryos produced in vitro but instead, and subject to certain express prohibitions …, to permit such creation and use subject to specified conditions, restrictions and time limits and subject to the regimes of control … The merits of this solution are not a matter for the House in its judicial capacity. It is, however, plain that while Parliament outlawed certain grotesque possibilities (such as placing a live animal embryo in a woman or a live human embryo in an animal), it otherwise opted for a strict regime of control. No activity within this field was left unregulated. There was to be no free for all.’2 The HFEA 1990 regulates the creation, keeping and use of embryos outside the human body and the storage and use of gametes (sperm and eggs) to create embryos (an organism formed by the fertilisation of two gametes). The HFEA 1990 prohibits certain activities from being carried out without a licence.3 Some activities, including placing non-human embryos or gametes in a woman, are subject to an absolute prohibition.4 The HFEA 1990 and the SAA 1985 were amended by the Human Fertilisation and Embryology Act 2008 (‘HFEA 2008’) to keep pace with developments in medicine and science and with societal changes. The HFEA 2008 permitted ‘human admixed’ embryos created from a combination of human and animal genetic material to be used for laboratory research; recognised same-sex couples as legal parents of children conceived through the use of donated sperm, eggs or embryos; banned sex selection of 402

Assisted Reproduction 11.1 offspring for non-medical reasons; and permitted non-profit-making bodies to take part in surrogacy arrangements in the UK for ‘reasonable payment’.5 The primary legislation, therefore, established a system whereby the bright lines are generally set out in the HFEA 1990 and SAA 1985 (for example criminalised acts, the framework of a licensing regime, the special status of the embryo) but flexibility remains through the workings of the Human Fertilisation and Embryology Authority (‘the HFEA’). The HFEA provides systems, processes and guidance to be consulted on, drafted and adapted when developments require such change – through regulatory mechanisms such as the Code of Practice, General Directions, Chair’s letters and Chief Executive’s letters. In R (Assisted Reproduction and Gynaecology Centre, ‘H’) v HFEA,6 Wall J considered the role of the HFEA and stated: ‘This is an area of rapidly developing scientific knowledge and debate, in which the Authority, as the licensing body established by Parliament, makes decisions and gives advice. It is not the function of the court to enter the scientific debate, nor is it the function of the court to adjudicate on the merits of the Board’s decisions or any advice it gives. Like any public authority, the Board is open to challenge by way of judicial review, but only if it exceeds or abuses the powers and responsibilities given to it by parliament.’ The assistance of the courts is most frequently sought in relation to matters of consent (including issues of consent concerning the extraction (particularly posthumously), storage, donation and use of gametes and embryos (fertilised eggs)) and the often interlinked issues of parenthood. Article 8 of the European Convention on Human Rights (‘ECHR’)7 has proven to be of considerable import and utility when determining matters in relation to consent and parenthood and it is those that are the focus of this chapter. Through consideration of the legal framework currently in place and the relevant case law in the area, this chapter will also consider something which is perhaps a less regular feature of medical treatment decisions: the need to balance competing Art 8 rights of different individuals involved in disputes as to consent and/or parenthood (actual or prospective) and the right to found a family.8 The HFEA 1990 and the HFEA 2008 also govern the donation and use of embryos for other purposes, such as research, but these are beyond the scope of this book.9 1 2 3 4 5 6 7

[2003] UKHL 13, [2003] 2 AC 687. Ibid, paras 12 and 13. For example, HFEA 1990, ss 3, 3A, 4 and 4A. HFEA 1990, ss 3 and 4A. SAA 1985, s 2(2A), (2B), (5A), (8A), (8B). [2002] EWCA Civ 20 at para 15. ECHR Art 8: Right to respect for private and family life: 8(1) ‘Everyone has the right to respect for his private and family life, his home and his correspondence.’ 8(2) ‘There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic wellbeing of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.’ See para 11.30 below; Chapter 1: Consent – General, para 1.24; Chapter 4: Deciding for others – children, paras 4.11, 4.13, 4.17, 4.23 and 4.25; Chapter 9: Abortion, para 9.22, n14; Chapter 15: Withdrawal and Withholding of Treatment, paras 15.18, n5, 15.20 and 15.21.

403

11.1  Assisted Reproduction 8 ECHR Art 12: Right to marry: ‘Men and women of marriageable age have the right to marry and to found a family, according to the national laws governing the exercise of this right.’ However, the right ‘to found a family’ limb of Art 12 does not create a right to access reproductive technologies, adoption or surrogacy: see for example X and Y v UK (Application No 7229/75) [1977] ECHR 3; P, C and S v UK (Application No 56547/00) [2002] ECHR 604, (2002) 35 EHRR 31 and SH v Austria (Application No 57813/00) [2011] ECHR 1878. See Chapter 9: Abortion, paras 9.20, 9.24; see Chapter 12: Pregnancy and Childbirth, para 12.2. 9 Human Tissue Act 2004, s 53(1) specifically removes both gametes and embryos that are outside the human body from the regulatory remit of the Human Tissue Authority. Chapter 19 addresses Human Organ and Tissue Donation – gametes are excluded from that regulatory regime.

B  THE COMPONENTS OF THE REGULATORY REGIME 11.2 A range of components form part of the regulatory landscape of assisted reproduction.1 In X v Y,2 Theis J referred to the ‘somewhat labyrinthine provisions of the relevant statutes, supporting guidance and code’ which ‘must be strictly adhered to by those implementing its provisions on the ground.’3 The 1990 and 2008 Acts provide the regulatory framework. Other regulatory mechanisms provide detailed procedures and provisions to interpret and apply the regulatory framework whilst ensuring that the law is flexible enough to keep pace with societal and scientific change. In Evans v Amicus Healthcare Ltd,4 Thorpe and Sedley LJJ noted that: ‘the twin pillars supporting the parliamentary regulation of this difficult field were intended to be: (a) the requirement for informed consent, capable of being withdrawn at any point prior to the transfer of the embryos to the woman receiving treatment; (b) the focus on child welfare required by section 13(5) [of the HFEA 1990].’5 Lord Bingham in R (Quintavalle) v Secretary of State for Health6 identified the three levels of control which the HFEA 1990 imposes, namely: ●● ●● ●●

that contained within the Act itself; that provided by the Secretary of State through regulations;7 and that exercised by the authority (the HFEA).8

One example of the dynamic nature of the regulatory regime relates to mitochondrial donation. Mitochondrial donation was on the horizon when the 2008 Act was being prepared. An enabling provision9 was therefore included to amend the HFEA 1990 to provide a regulation-making power to enable eggs and/or embryos with altered mitochondrial DNA to be classified as permitted eggs or embryos, and therefore permitted to be implanted into a woman. In 2015, after extensive public consultation, such regulations were approved by Parliament.10 The HFEA is tasked with licensing and regulating mitochondrial donation, as required.11 Another example can be seen in the response to the pausing of fertility services during the coronavirus pandemic, when regulations were introduced to extend the storage period for embryos and gametes by two years.12 1

The Court of Appeal in R (M) v Human Fertilisation and Embryology Authority [2016] EWCA Civ 611, [2017] 4 WLR 130 adopted the analysis of the statutory framework and guidance set out in Ouseley J’s judgment at first instance and set it out in an appendix to their judgment: see bit.ly/2LpDvGc.

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Assisted Reproduction 11.5 2

X v Y (St Bartholomew’s Hospital Centre for Reproductive Medicine intervening) [2015] EWFC 13, [2016] PTSR 1. 3 Ibid, para 2 (Theis J). 4 [2004] EWCA Civ 727, [2005] Fam 1. 5 Ibid, para 23 (Thorpe and Sedley LJJ). 6 [2003] UKHL 13, [2003] 2 AC 687, para 4 (Lord Bingham of Cornhill). 7 Pursuant to s 45(1) of the HFEA 1990, the Secretary of State may make regulations for any purposes for which regulations may be made under that Act. 8 HFEA 1990, s 19(6) provides the HFEA with a power by regulations to ‘make such additional provision about procedure in relation to the carrying out of functions under ss 18 and 18A and this section as it thinks fit’. 9 HFEA 2008, s 26. 10 Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015 (SI 2015/572). 11 For further information on mitochondrial donation, see bit.ly/39UNJIR. 12 The Human Fertilisation and Embryology (Statutory Storage Period for Embryos and Gametes) (Coronavirus) Regulations 2020 (SI 2020/566). See para 11.23 below.

HFEA 1990 11.3 The HFEA 1990 is the primary legislation relating to the regulation of assisted reproduction and therefore IVF clinics. It establishes the legislative framework governing assisted reproduction and embryo research in the UK. The scheme of the Act is to prohibit certain activities completely, and to allow other specified activities to be carried out only under the authority of a licence. A licence is granted by the HFEA. Non-compliance with a licence can result in regulatory sanction. The HFEA 1990 extends to England, Wales, Scotland and Northern Ireland, although since the UK’s exit from the EU there are some differences between the position in Great Britain and Northern Ireland.

HFEA 2008 11.4 The HFEA 2008 has three parts. Part 1 made a range of amendments to the HFEA 1990 to take account of scientific developments, to reflect changes in social attitudes and to update the HFEA’s ability to regulate according to principles of better regulation. Part 2 relates to parenthood and replaces existing provision under the HFEA 1990 in relation to the determination of legal parenthood as a result of assisted reproduction, addressing parenthood for same-sex couples, unmarried couples and single parents of children conceived through surrogacy. Part 3 amended the SAA 1985 and made general amendments to regulation-making powers.

The European Union Tissues and Cells Directives 11.5 At the time when the UK was part of the European Union (‘EU’), the European Union Tissues and Cells Directives (‘the EUTCD’) introduced common safety and quality standards for human tissues and cells across Member States. The purpose of the EUTCD was to facilitate a safer and easier exchange of tissues and cells (including human eggs and sperm) between Member States and to improve safety standards for European citizens. The ‘parent’ Directive was adopted by the Council of Ministers on 2 March 2004,1 and Member States were obliged to comply with its provisions from 7 April 2006. Two ‘technical’ Directives – which set out the technical requirements for inter alia the donation, procurement, testing, coding, processing, preservation, 405

11.5  Assisted Reproduction storage and distribution of human tissues and cells – were adopted in February and October 2006, respectively.2 A further Directive was adopted in October 2015 to ensure that human tissues and cells imported into the EU from other countries met quality and safety standards that were equivalent to tissues and cells procured, processed and distributed in the EU.3 Prior to the UK’s exit from the EU, the EUTCD were incorporated into the HFEA 1990 through additional regulations in 2007, which were amended in 2018.4 1 Directive 2004/23/EC of 31 March 2004 on setting standards of quality and safety for the donation, procurement, testing, processing, preservation, storage and distribution of human tissues and cells [2004] OJ L102/48. 2 Directive 2006/17/EC of 8 February 2006 implementing Directive 2004/23/EC of the European Parliament and of the Council as regards certain technical requirements for the donation, procurement and testing of human tissues and cells [2006] OJ L38/40; and Directive 2006/86/ EC of 24 October 2006 implementing Directive 2004/23/EC of the European Parliament and of the Council as regards traceability requirements, notification of serious adverse reactions and events and certain technical requirements for the coding, processing, preservation, storage and distribution of human tissues and cells [2006] OJ L294/32. 3 Directive 2015/566 of 8 April 2015 implementing Directive 2004/23/EC as regards the procedures for verifying the equivalent standards of quality and safety of imported tissues and cells [2015] OJ L93/56. 4 Human Tissue (Quality and Safety for Human Application) Regulations 2007, as amended by Human Tissue (Quality and Safety for Human Application) (Amendment) Regulations 2018. For a useful overview of the changes as enacted, see the explanatory notes to the 2008 Act, available at: bit.ly/3oDkgqX.

The post-‘Brexit’ position 11.6 Notwithstanding the EU’s clear influence on UK legislation in this area, the UK’s exit from the EU on 31 January 2020 has led to some immediate changes and may well lead to more significant deviations from the current regime in the future. Of particular note is the Northern Ireland Protocol, which is one of the key features of the new relationship between the UK and the EU. This essentially allows for the continued free movement of goods between Northern Ireland and the EU, whilst at the same time keeping Northern Ireland within the UK customs territory.1 In respect of the regulation of assisted reproduction, the Protocol has led to somewhat of a divergence between Northern Ireland and Great Britain (England, Scotland and Wales). At first, the Human Fertilisation and Embryology (Amendment) (EU Exit) Regulations 2019 ensured that, upon the end of the Implementation Period on 31 December 2020, the entire UK would still maintain the current safety and quality standards for tissues and cells as provided by the EUTCD. However, as a result of the Northern Ireland Protocol, Northern Ireland must continue to meet the requirements of the EUTCD for as long as the Protocol is in force. The Human Fertilisation and Embryology (Amendment) (EU Exit) Regulations 2020 were passed in order to give effect to the Protocol in this regard; these Regulations therefore restrict the 2019 Regulations to Great Britain (England, Wales and Scotland) only. Thus, whilst there is still a single set of UK rules, within them a small number of provisions will apply to Northern Ireland or Great Britain only.2 In particular, since 11pm on 30 June 2021, all countries outside the UK (including those within the EU/EEA) have become ‘third countries’ to Great Britain.3 This means that clinics in Great Britain that import gametes and embryos from any such country must have an importing tissue establishment 406

Assisted Reproduction 11.7 (ITE) certificate in place. In contrast, for imports into Northern Ireland from EU/EEA countries, no ITE import certificate is required as these countries are not considered to be ‘third countries’ to Northern Ireland.4 This reflects the position established by the Northern Ireland Protocol.5 At the time of writing, the HFEA has dedicated an entire section of the ‘Clinic Portal’ on its website to ‘EU Exit guidance’. This sets out the relevant changes for licensed clinics and provides considerable resources to help clinics navigate the new landscape.6 1 For more information on the Northern Ireland Protocol, see the UK Government’s policy paper: Cabinet Office, The Northern Ireland Protocol (CP 346, December 2020), available at bit.ly/2VTztuM. See also a further policy paper which sets out how the Northern Ireland Protocol is working as at July 2021: HM Government, Northern Ireland Protocol: the way forward (CP 502, July 2021), available at: bit.ly/3xN7iec. 2 For further details, see the Explanatory Memorandum to the Human Fertilisation and Embryology (Amendment) (EU Exit) Regulations 2020 (SI 2020/1307), available at: bit. ly/3sjuf7J. 3 HFEA 1990, s 2B(4)(a). 4 HFEA 1990, s 2B(4)(b). 5 For an overview of all of the new post-Brexit requirements for clinics, see Chair’s Letter CH(21)02, New requirements come into force at the end of the transition period (9 June 2021). Available at: bit.ly/3K94GxE. See also para 11.10 below. 6 Available at: bit.ly/3MqAH5T.

SAA 1985 11.7 Surrogacy is the practice of a woman (‘the surrogate’) becoming pregnant with, carrying and giving birth to a child for another (‘the intended parent(s)’). When the surrogate is genetically related to the child, the arrangement is known as a traditional surrogacy. Where the child is not genetically related to the surrogate, the arrangement is known as gestational surrogacy. Surrogacy arrangements in the UK are regulated by the SAA 1985. The SAA 1985 is widely considered to have been hastily rushed through Parliament in response to the controversial ‘baby Cotton’ case1 and following publication of the negative Warnock Report in July 1984, in which moral objection was raised to all surrogacy arrangements. As originally enacted, the SAA 1985 did not adopt the recommendations of the majority in the Warnock Report; non-commercial surrogacy arrangements were not prohibited and medical professionals were not banned from taking part in surrogate pregnancies. However, whilst the legislative framework did not seek to criminalise the surrogate or intended parents, the SAA 1985 banned third parties from initiating or taking part in negotiations, offering or agreeing to do so, and made both compiling information for use in making surrogacy arrangements and payments to a third party, or anyone else except the surrogate mother, unlawful. The provisions of the SAA 1985 were subsequently amended by the HFEA 1990 and the HFEA 2008 to permit non-profit making bodies to take part in surrogacy arrangements and to permit reasonable payments to be made to surrogates and non-profit making agencies. However, the law governing surrogacy in the UK remains complex and piecemeal; it was described by the Supreme Court in Whittington Hospital NHS Trust v XX as ‘fragmented and in some ways obscure.’2 407

11.7  Assisted Reproduction The key provisions of the SAA 1985 (as amended) can be summarised as follows: ●● ●● ●● ●● ●●

surrogacy arrangements are unenforceable;3 commercial surrogacy arrangements are prohibited;4 with the exception of a surrogate or intended parent, it is a criminal offence for any person in the UK to negotiate a commercial surrogacy arrangement or knowingly cause another to do so;5 non-profit making bodies are permitted to receive reasonable payment for taking part in and facilitating a surrogacy arrangement;6 advertisements about surrogacy are prohibited, except where placed by or on behalf of a non-profit making body.7

At the time of writing, the authors are not aware of any prosecutions that have been brought under the SAA 1985. In 2013 the High Court, considering an application for a parental order under s 54 of the HFEA 1990,8 referred the British Surrogacy Centre of California to the Department of Health for investigation.9 It is not known whether any regulatory action was taken in this case. 1

Re C (A Minor) (Ward: Surrogacy) [1985] Fam Law 191. In January 1985 Baby Cotton was born to a surrogate mother who had agreed to carry and give birth to the child for an infertile couple from the USA in exchange for £6,500. The local authority intervened and obtained a place of safety order in respect of the child. The intended parents commenced wardship proceedings and were ultimately granted care and control of the child. 2 [2020] UKSC 14, [2020] 2 WLR 972, para 9 (Lady Hale). 3 SAA 1985, s 1A. 4 Ibid, s 2(1). 5 Ibid, s 2(2) and 4. 6 Ibid, s 2(2A), (2B), (2C) and (5A). 7 Ibid, s 3. 8 See para 11.46 below. 9 J v G (Parental Orders) [2013] EWHC 1432 (Fam) at para 6 (Theis J).

Directions 11.8 The HFEA has the power to issue new rules through ‘Directions’. Directions can either be ‘General’, such that they apply to all clinics and centres, or they can be ‘Special’, such that they apply to individual clinics or centres. Directions are made pursuant to the HFEA 1990, s 23: ‘(1) The Authority may from time to time give directions for any purpose for which directions may be given under this Act or directions varying or revoking such directions. ‘(2)  A person to whom any requirement contained in directions is applicable shall comply with the requirement. ‘(3) Anything done by a person in pursuance of directions is to be treated for the purposes of this Act as done in pursuance of a licence. ‘(4) Where directions are to be given to a particular person, they shall be given by serving notice of the directions on the person. ‘(5) In any other case, directions may be given— (a) in respect of any licence (including a licence which has ceased to have effect), by serving notice of the directions on the person— 408

Assisted Reproduction 11.8 (i) who is the person responsible or the holder of the licence, if different, or (ii) who was the person responsible or the holder of the licence, if different, (b)  if the directions appear to the Authority to be general directions or it appears to the Authority that it is not practicable to give notice in pursuance of paragraph (a) above, by publishing the directions in such way as, in the opinion of the Authority, is likely to bring the directions to the attention of the persons to whom they are applicable.’ General Directions are generally issued when the HFEA needs to change a procedure or practice in light of new evidence, a series of incidents, external guidance or changes in legislation. Following the end of the 11-month Implementation Period following the UK’s exit from the EU on 31 January 2020, some of the General Directions have a ‘GB’ (Great Britain) version and a ‘NI’ (Northern Ireland) version, to reflect the legislative differences in those regions as a result of the Northern Ireland Protocol.1 The General Directions in force at the time of writing are as follows:2 0000 – Revocation of directions (version 1) 0001 – Gamete and embryo donation (version 4) 0002 – Recording and providing information to the HFEA under a research licence (version 3) 0003 – Multiple births (version 4) 0004 – Bringing into force the Code of Practice (version 2) 0005 – Collecting and recording information for the HFEA (version 4) 0006(GB) –  Import and export of gametes and embryos (Great Britain) (version 9) 0006(NI) – Import and export of gametes and embryos (Northern Ireland) (version 1) 0007 – Consent (version 10) 0008 – Information to be submitted to the HFEA as part of the licensing process (version 6) 0009(GB) – Keeping gametes and embryos in the course of carriage between premises (Great Britain) (version 2) 0009(NI) – Keeping gametes and embryos in the course of carriage between premises (Northern Ireland) (version 1) 0010 – Satellite and transport IVF (version 1) 0011 – Reporting adverse incidents and near misses (version 3) 0012 – Retention of records (version 3) 0013(GB) – Traceability (Great Britain) (version 3) 0013(NI) – Traceability (Northern Ireland) (version 1) 0014 – Covid-19 Treatment Commencement Strategy (version 2) If a clinic fails to comply with a Direction, this amounts to a breach of a statutory licence condition and may lead the HFEA to vary, suspend or revoke the clinic’s licence.3 1 For more information on the Northern Ireland Protocol, see the UK Government’s policy paper: Cabinet Office, The Northern Ireland Protocol (CP 346, December 2020), available at: bit.ly/2VTztuM. See also a further policy paper which sets out how the Northern Ireland

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11.8  Assisted Reproduction

2 3

Protocol is working as at July 2021: HM Government, Northern Ireland Protocol: the way forward (CP 502, July 2021), available at: bit.ly/3xN7iec. Directions are available on the HFEA’s website: see bit.ly/2K5HNln. HFEA 1190, ss 18(2)(c), 18A(3) and 19C.

Code of Practice 11.9 Section 25 of the HFEA 1990 requires the HFEA to maintain a Code of Practice giving guidance about the proper conduct of activities authorised by a licence, and the proper discharge of the functions of the Person Responsible and other persons to whom the licence applies. In essence, the Code assists licensed centres with understanding and complying with their legal requirements.1 Whilst the HFEA may from time to time revise the Code,2 it must be approved by the Secretary of State for Health.3 At the time of writing, the current edition, published January 2019 and revised in December 2019 and October 2021, is the 9th edition containing 33 guidance notes. The most recent version of the Code contains revisions to 16 of the 33 guidance notes including storage of gametes and embryos, import and exports and legal parenthood. It does not introduce or change any existing areas of policy but focuses on the impact of surrogacy arrangements on legal parenthood and the exportation of gametes or embryos for patients seeking surrogacy abroad, in addition to legal changes that have come into force since December 2019, primarily as a result of the UK’s exit from the EU on 31 January 2020.4 Whilst the Code essentially amounts to statutory guidance rather than law, such that a person’s failure to observe any of its provisions shall not itself render them liable to any proceedings, the HFEA will nonetheless: ●●

●●

take account of any relevant provision of the Code in considering whether there has been a failure to comply with any licence conditions (in particular, conditions requiring anything to be ‘proper’ or ‘suitable’); and take into account any observance of, or failure to observe, the Code in considering whether or not to vary or revoke a licence.

1 Despite this, the Code does confirm that, although it has sought to provide interpretations of the law (especially where the law is very complex), such interpretations ‘are intended only to aid understanding and are not definitive’. HFEA, Code of Practice (9th edn, October 2021), p 12, available at the HFEA, see bit.ly/HFEA-Code-9th. 2 HFEA 1990, s 24(4). 3 Ibid, s 26. 4 HFEA, Code of Practice update to be published October 2021 – background paper. Available at bit.ly/3CJkW69. For an overview of the legislative changes, see para 11.6 above.

Chair’s Letters 11.10 Chair’s Letters notify licensed centres of changes to HFEA policy. Sent by the Chair of the HFEA, the letters communicate to centres what they are expected to do in light of the policy change.1 When a new edition of the Code of Practice is published, the Chair’s Letters issued since the previous edition are incorporated into the new Code. If a centre fails to comply with a Chair’s Letter, it could result in regulatory sanction, including the amendment, suspension or revocation of its licence.2 410

Assisted Reproduction 11.11 There were two Chair’s Letters in 2019. CH(19)023 notified centres that a new version of the Code of Practice would be published in December 2019.4 CH(19)015 acknowledged that clinics now adopt electronic methods for obtaining informed consent, which can either be used to supplement the traditional paper-based approach or routinely replace it, where appropriate. However, the Chair emphasised the centrality of consent to the ethical and regulatory framework, and stressed that clinics must retain the option for paper-based consent where patients request this and also to serve as a back-up method to the electronic approach. The Chair gave examples of the different electronic methods that could be used to obtain informed consent, including editable PDF consent forms, a ‘more sophisticated platform/programme’, and generic videos. There were two Chair’s Letters in 2020. CH(20)016 explained to centres that new Regulations7 would be introduced as a result of the coronavirus pandemic’s potential impact on patients storing gametes or embryos, and on research projects involving the use of donated embryos. One major change to be introduced by these Regulations was the increase in the maximum statutory storage period for gametes and embryos from 10 years to 12 years. This would only apply to patients who had gametes or embryos in storage on the day the Regulations came into force, namely 1 July 2020.8 1 2 3 4

All of the Chair’s letters are available at: bit.ly/391ya3w. HFEA 1990, ss 18(2), 18A(3), (5) and 19C. Available at: bit.ly/3vGCTzk. This was referring to the previous version of the 9th version of the Code of Practice, which is in force at the time of writing: see para 11.9 above. 5 Available at bit.ly/38iPvVd. 6 Available at bit.ly/3LeEZgC. 7 The Human Fertilisation and Embryology (Statutory Storage Period for Embryos and Gametes) (Coronavirus) Regulations 2020 (SI 2020/566)). 8 For more on storage periods, see para 11.23 below.

11.11 CH(20)021 explained the changes made as a result of the UK leaving the EU on 31 January 2020 and the legislative position following the end of the Implementation Period on 31 December 2020. The Chair’s Letter set out that, as a result of the coming into force of new Regulations at the end of that period,2 Northern Ireland would continue to enforce EU customs rules and product standards rules, whereas the rest of the UK would stop following them. As a result, some new processes on movements between Great Britain and Northern Ireland would be introduced. The Chair confirmed that the HFEA 1990 would continue to apply to the whole of the UK but with some amendments resulting in certain provisions applying to Northern Ireland only and, in some instances, to Great Britain only. This led to some changes to General Directions 0006, 0009 and 0013.3 The Code of Practice has reflected these legislative changes since its last update in October 2021. Finally, the Chair announced that some of the licence conditions would need to be amended, including those concerning traceability and the marking of medical devices.4 Three Chair’s Letters were published in 2021. CH(21)015 highlighted that more same sex couples were choosing to access IVF treatment to start a family. Where women chose to provide eggs (or embryos created with them) for their partner’s treatment and it was their female partner who would carry the pregnancy, clinics were asked to register egg providers as ‘donors’ on the HFEA Register. The Chair explained that, as part of the HFEA’s new data

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11.11  Assisted Reproduction submission system (PRISM), the egg provider would now be registered as a ‘patient/partner’ to more accurately reflect their status and intended role in the child’s life. Consequently, the HFEA developed a new consent form for women providing eggs, or embryos created with their eggs, for use in the partner’s treatment. CH(21)026 related to the UK’s exit from the EU. The Chair explained that, from the end of the six-month transition period on 30 June 2021,7 a number of statutory provisions would take effect. In particular, from the end of that period, all countries outside of the UK (including those within the EU/EEA) would become ‘third countries’ to Great Britain. This has implications for clinics in Great Britain which import gametes from any other country; in those circumstances, the clinic must have an importing tissue establishment (‘ITE’) import certificate in place. However, clinics importing gametes from EU/EEA countries into Northern Ireland do not require an ITE import certificate in place since these countries are not ‘third countries’ to Northern Ireland. As a result of these changes, various licence conditions were amended.8 CH(21)(03)9 notified centres that an updated to the 9th edition of the Code of Practice would be published on 26 October 2021.10 1 Available at bit.ly/3K7bI5Z. 2 Human Fertilisation and Embryology (Amendment) (EU Exit) Regulations 2020 (SI 2020/1307). 3 See para 11.8 above, in particular the new ‘GB’ and ‘NI’ versions of these Directions. 4 For more on licence conditions, see para 11.15 below. 5 Available at bit.ly/3Ka7bj9. 6 Available at bit.ly/3K94GxE. 7 As provided for by the Human Fertilisation and Embryology (Amendment) (EU Exit) Regulations 2019 (SI 2019/482). 8 There are now separate licence conditions for clinics and centres based in Great Britain and those based in Northern Ireland. See the HFEA’s website, available at bit.ly/3CNI3MN. 9 See bit.ly/3Le0WMw. 10 This was referring to the version of the Code of Practice which is in force at the time of writing: see para 11.9 above.

Chief Executive’s Letters 11.12 Chief Executive’s letters notify clinics and centres of changes to the HFEA’s operating procedures and set out what they are required to do in light of these changes. As with Chair’s letters, if a clinic or centre fails to comply with a procedural change outlined in a Chief Executive’s letter, its licence could be amended, suspended or revoked.1 There have been no Chief Executive’s Letters published since 2017. Those published in 2017, CE17(01), CE17(02) and CE17(03), notified all persons responsible of the launch of the new HFEA website and Choose a Fertility Clinic website. Clinics were asked to provide feedback on the new portal and update the details to appear on the clinic’s profile to include the opening hours, a photograph or logo, service features (such as the availability of female doctors), waiting times and source for donated eggs, sperm and embryos.2 1 2

HFEA 1990, ss 18(2), 18A(3), (5) and 19C. Available at bit.ly/3K8E4wS.

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Assisted Reproduction 11.14

Guidance Notes/Policies/Manuals 11.13 These are further methods of standard-setting, or policy and guidance provision.1 Examples include the Compliance and Enforcement Policy (released in April 2016),2 guidance on consent, ‘Giving Consent: A guide for patients and their partners’, published in February 20173 and EU Exit Guidance.4 1 See the section on ‘Other guidance and information’ on the HFEA’s website. Available at bit. ly/3COzLnN. 2 Available at bit.ly/3n4TGGJ. 3 Available at bit.ly/39UTWEF. 4 Available at bit.ly/3MqAH5T.

C  LICENSING REGIME Licences generally (HFEA 1990, s 11 and Sch 2) 11.14 A licence is required for licensed activities, which includes fertility treatments, research, storage of gametes and embryos, and embryo testing. Section 3(1)–(1B) of the HFEA 1990 provides that no person shall bring about the creation of an embryo except in pursuance of a licence, or keep or use an embryo except in pursuance of a licence or third party agreement (in relevant cases), or procure or distribute an embryo intended for human application except in pursuance of a licence or a third party agreement. The storage or use of an embryo can only take place lawfully in accordance with the requirements of the licence in question. Contravening s 3(1), (1A) or (1B) is a criminal offence under s 41(2)(a)–(aa). Section 4 of the HFEA 1990 prohibits the storage or use of any gamete (that is, an unfertilised egg or live sperm)1 except in pursuance of a licence. Licences are granted under s 11 by the HFEA. Section 12(1)(c) makes it a condition of every licence that Sch 3 to HFEA 1990 is complied with by the licenceholder. Schedule 3 is concerned with ‘consents to use or storage of gametes, embryos or human admixed embryos’.2 Consent is a central aspect of the HFEA’s approach to the regulation of licensed activities under HFEA 1990, as recognised in R v HFEA, ex p Blood3 in the context of Special Directions.4 Lord Woolf MR stated: ‘in giving a particular direction, the authority is using delegated powers, which should be used to serve and promote the objects of the legislation, which clearly attach great importance to consent, the quality of that consent and the certainty of it.’5 Section 11 of and Sch 2 to the HFEA 1990 only permit the HFEA to issue four types of licence: ●● ●● ●● ●●

licences for treatment services; licences for non-medical fertility services; licences for storage of gametes, embryos and human admixed embryos; and licences authorising activities for the purposes of a project of research.

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11.14  Assisted Reproduction The licence types can therefore be broadly categorised as storage, treatment, research and non-medical fertility services. Whilst the meaning of ‘research’ is clear, definitions of the other three terms can be found in s 2 of the HFEA 1990: ●● ●● ●●

‘store’, in relation to gametes, embryos or human admixed embryos, is defined as ‘preserve whether by cryopreservation6 or in any other way’, and ‘storage’ and ‘stored’ are to be interpreted accordingly; ‘treatment services’ are defined as ‘medical, surgical or obstetric services provided to the public or a section of the public for the purpose of assisting women to carry children’; ‘non-medical fertility services’ are defined as ‘any services that are provided, in the course of a business, for the purpose of assisting women to carry children, but are not medical, surgical or obstetric services.’

The carrying out of the following activities requires a licence (or third-party agreement): ●● ●● ●● ●● ●● ●● ●● ●●

creating human embryos (s 3(1)); using or keeping human embryos (s 3(1A)); storing gametes (s 4(1)(a)); using sperm (other than partner donated sperm which has not been processed or stored) to provide treatment services (s 4(1)(b)); using the eggs of a woman which have been processed or stored, or the eggs of any other woman, to provide treatment services (s 4(1)(b)); procuring, testing, processing or distributing gametes intended for human application (s 4(1A)); creating, keeping or using human admixed embryos (s 4A(2)); mixing human gametes with animal gametes (s 4A(2)).

A person who breaches the prohibitions in HFEA 1990 or carries out an activity which can only be carried out under the authority of a licence or third-party agreement,7 without holding such a licence or without being party to a thirdparty agreement, commits a criminal offence.8 The penalty, if convicted, for such an offence may be a term of imprisonment, a fine, or both.9 1 HFEA 1990, s 1(4). 2 It should be noted that, under the legislation, it is not possible for a woman to give legally valid consent to having genetic material of non-human origin placed inside her. HFEA 1990, s 4A(1) prohibits a person from placing in a woman a human admixed embryo, any other embryo that is not a human embryo, and any gametes other than human gametes. 3 [1999] Fam 151. 4 For more information on Special Directions, see para 11.21 below. 5 Blood (n3) p 185A (Lord Woolf MR). 6 Cryopreservation is a process that preserves cells, tissues or other biological constructs by cooling them to very low temperatures. 7 HFEA 1990, s 2A. 8 Ibid, ss 41 and 42. 9 Ibid, s 41(1)–(2).

Licence conditions (HFEA 1990, ss 12–15C) 11.15 Section 12 of the HFEA 1990 sets out a number of general conditions which are attached to every licence granted under the HFEA 1990. These general conditions include: ●●

a requirement that the activities authorised by the licence are carried on only on the premises to which the licence relates and under the supervision of the person responsible; 414

Assisted Reproduction 11.16 ●● ●● ●●

a requirement that proper records are maintained in such form as specified in directions; a requirement that no money or other benefit shall be given or received in respect of any supply of gametes, embryos or admixed embryos unless authorised by directions;1 a requirement to record, and provide to the HFEA upon request, such information as is necessary to facilitate the traceability of gametes and embryos and any information relating to the quality or safety of gametes or embryos.

Specific conditions for licences for treatment, storage, research, human application and non-medical fertility services are set out in ss 13–15 of the HFEA 1990.2 However, these are not the only licence conditions imposed by the HFEA. The full set of current ‘Standard Licence Conditions’ for clinics and research centres are available on the HFEA’s website.3 Following the UK’s exit from the EU, the HFEA imposes separate Standard Licence Conditions on clinics and research centres in Great Britain (England, Wales and Scotland) and those in Northern Ireland. Under the HFEA 1990, the ‘person responsible’ is the individual under whose supervision the activities authorised by a particular licence are carried on. The person responsible has a duty, under s 17, to secure that the conditions of the licence are complied with. If there is a failure to discharge this duty, the HFEA may take regulatory action in the form of revoking, varying or suspending the licence.4 1 Paragraphs 5 and 6 of Direction 0001 provide that centres may compensate sperm donors a fixed sum of up to £35 per clinic visit and eggs donors a fixed sum of up to £750 per cycle of donation. Paragraph 8 permits payments in excess of the amounts specified in paras 5 and 6 above (such as for travel, accommodation or childcare) but only where excess expenses (a) are reasonable; (b) do not include loss of earnings; (c) have been incurred by the donor in connection with the donation of gametes provided to that centre; and (d) have been incurred by the donor solely within the UK. Centres are not permitted to pay overseas travel expenses of a non-UK donor, whether directly or indirectly. 2 HFEA 1990, ss 18–18A address the revocation and variation of licences respectively. 3 Available at bit.ly/3CNI3MN. 4 HFEA 1990, ss 18(2)(b), 18A(3) and 19C.

D CONSENT 11.16 Consent is central to both the ethics and the effective regulation of this field and is embedded in the licensing requirements of centres providing assisted reproduction. There are four different types of consent: consent to fertility treatment; consent to disclosure of information; consent to the use and storage of sperm, eggs and/or any embryos produced from them; and consent to parenthood.1 The assistance of the courts has frequently been sought both when interpreting the consent provisions and in rectifying situations where centres have used incorrect forms relating to legal parenthood or consent.2 Administrative errors can have a considerable impact on the reproductive choices/autonomy and the private and family lives of individuals. Paragraph 1(1) of Sch 3 to the HFEA 1990 provides that consent, or any notice varying or withdrawing consent, must be given in writing. Paragraph 1(3) 415

11.16  Assisted Reproduction introduces the concept of ‘effective consent’ and defines it as a consent under Sch 3 which has not been withdrawn (that is, written and continuing consent). Paragraph 2 of Sch 3 to HFEA 1990 states, so far as is relevant: ‘(1) A consent to the use of any embryo must specify one or more of the following purposes: (a) use in providing treatment services to the person giving consent, or that person and another specified person together, (b) use in providing treatment services to persons not including the person giving consent … … and may specify conditions subject to which the embryo may be used. … ‘(2) A consent to the storage of any gametes, any embryo or any human admixed embryo must– (a) specify the maximum period of storage (if less than the statutory storage period), (b) … state what is to be done with the gametes, embryo or human admixed embryo if the person who gave the consent dies or is unable, because the person lacks capacity to do so, to vary the terms of the consent or to withdraw it … … and may (in any case) specify conditions subject to which the gametes, embryo or human admixed embryo may remain in storage. ‘(2A) A consent to the use of a person’s human cells to bring about the creation in vitro of an embryo or human admixed embryo is to be taken unless otherwise stated to include consent to the use of the cells after the person’s death.’ There is a range of specific consent forms to be used depending on the particular circumstances.3 It is now formally recognised by the HFEA that many clinics use electronic methods for taking consent and this is considered to be an acceptable and appropriate means of consenting patients provided that General Direction 0007 (Consent) and the Code of Practice are adhered to. In Chair’s Letter CH(19)01, ‘Electronic methods for taking consent’, the Chair of the HFEA stated that: ‘Electronic methods for taking consent can be used to supplement the traditional paper-based approach or as a routine replacement for it, where appropriate. Clinics must retain the option for paper-based consent for use at a patient’s request and to serve as a back-up method to the electronic component.’4 In PQ v RS (Legal Parenthood: Written Consent),5 Wall J noted that the following principles apply where a mistake in a consent to legal parenthood is discovered: ‘(1) The court can, in appropriate cases, correct mistakes on the face of the documents. ‘(2) This is permissible if the mistake is “obvious on the face of the document and it is plain what was meant” … ‘(3) The court can do this by way of construction or rectification … ‘(4) In either case (correction or rectification) the fact of the parties separation is “legally irrelevant … for … the legal status of all

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Assisted Reproduction 11.17 parties finally and irrevocably crystallised at the moment when the embryo or the sperm and eggs were placed in the mother, or the mother was artificially inseminated, and this treatment resulted in the birth of the child” …’6 1 Further information on consent is available on the HFEA website at bit.ly/3a0in3E. See also the General Medical Council’s Guidance on Decision making and consent, which came into force on 9 November 2020; available at bit.ly/2W2bu9K. 2 For example, In the Matter of the Human Fertilisation and Embryology Act 2008 (Case G) [2016] EWHC 729 (Fam) and see cases set out in paras 11.26–11.30 below. 3 Consent forms are available on the HFEA website: bit.ly/3yM7RXi. 4 CH(19)01, ‘Electronic methods for taking consent’, available at: bit.ly/38iPvVd. See also para 11.10 above. 5 [2019] EWFC 65 at para 15. See also paras 11.26–11.30 below. 6 Ibid, para 15 (Wall J).

Procedure for giving consent 11.17 HFEA 1990 prohibits the storage or use of gametes in the UK without effective, fully informed consent.1 Schedule 3, para 3 imposes two mandatory requirements regarding the consent process: ‘(1)

Before a person gives consent under this Schedule– (a) he must be given a suitable opportunity to receive proper counselling about the implications of taking the proposed steps, and (b) he must be provided with such relevant information as is proper.’

The Code of Practice provides guidance on matters relating to counselling at Guidance Note 3.2 The following provisions in paragraphs 5, 6 and 8 of Sch 3 are also particularly relevant to consent: ‘5(1) A person’s gametes must not be used for the purposes of treatment services or non-medical fertility services unless there is an effective consent by that person to their being so used and they are used in accordance with the terms of the consent. ‘(2) A person’s gametes must not be received for use for those purposes unless there is an effective consent by that person to their being so used. ‘(3) This paragraph does not apply to the use of a person’s gametes for the purpose of that person, or that person and another together, receiving treatment services. ‘6(1) A person’s gametes or human cells must not be used to bring about the creation of any embryo in vitro unless there is an effective consent by that person to any embryo, the creation of which may be brought about with the use of those gametes or human cells. being used for one or more of the purposes mentioned in paragraph 2(1) (a), (b) or (c) above. … ‘8(1) A person’s gametes must not be kept in storage unless there is an effective consent by that person to their storage and they are stored in accordance with the consent. …

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11.17  Assisted Reproduction ‘(2) An embryo the creation of which was brought about in vitro must not be kept in storage unless there is an effective consent, by each relevant person in relation to the embryo, to the storage of the embryo and the embryo is stored in accordance with those consents.’ 1 See also para 11.16 above. 2 HFEA, Code of Practice (9th edn, October 2021), p 25, available at the HFEA, see: bit.ly/ HFEA-Code-9th. See also HFEA 1990, Sch 3ZA (circumstances in which offer of counselling required as condition of licence for treatment).

11.18 As part of the counselling process there is also a requirement for a person to be informed about the provisions as to when consent can and cannot be withdrawn.1 Consent may be changed or withdrawn at any point up until the gametes or embryos have been used in treatment. Where consent to storage of a permitted embryo is withdrawn, reasonable steps must be taken to give notice of the withdrawal of consent to each interested person (ie those in respect of whom the embryo was to be used in providing treatment services). Storage of the embryo then remains lawful until the end of the period of 12 months from the date on which notice was received or until each person notified of the withdrawal of consent gives notice to the person keeping the embryo that they consent to its destruction. The material effect of Sch 3 is summarised in the Court of Appeal’s judgment in Evans v Amicus Healthcare Ltd:2 ‘(i) Those contemplating the storage and/or use of embryos created from their gametes must first be offered counselling; ‘(ii) they must specifically be informed of the circumstances in which consent to the storage or use of an embryo may be varied or withdrawn; ‘(iii) consent given to the use of an embryo must specify whether the embryo is to be used to provide treatment services to the person giving consent, or to that person together with another, or to persons not including the person giving consent; ‘(iv) an embryo may only be stored while there is effective consent to its storage from both gamete providers, and in accordance with the terms of the consent; ‘(v) an embryo may only be used while there is an effective consent to its use from both gamete providers, and in accordance with the terms of that consent; ‘(vi) consent to the storage of an embryo can be varied or withdrawn by either party whose gametes were used to create the embryo at any time; ‘(vii) consent to the use of an embryo cannot be varied or withdrawn once the embryo has been used in providing treatment services.’ Posthumous use of gametes requires effective consent of the gamete provider. However, s 24(4) does permit some flexibility over the import and export of embryos and has proved critical in relation to decisions relating to posthumous use. 1 2

HFEA 1990, Sch 3, paras 4–4A (variation and withdrawal of consent). [2004] EWCA Civ 727, [2005] Fam 1, para 24 (Thorpe and Sedley LLJ).

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Assisted Reproduction 11.20

Import and export of gametes and embryos 11.19 The power to import and export is clearly a very important one and is contained in s 24(4), which allows the HFEA to give directions in relation to import and export as follows: ‘(4)

Directions may authorise any person to whom a licence applies to – (a) receive gametes, embryos or human admixed embryos – (i) from outside the United Kingdom, and (ii)  in respect of Northern Ireland, from Great Britain, or (b) send gametes, embryos or human admixed embryos outside the United Kingdom, in such circumstances and subject to such conditions as may be specified in the directions

‘(4ZA)  Directions made by virtue of subsection (4) may provide for sections 12 to 14 of this Act to have effect with such modifications as may be specified in the directions.’1 This reference to ss 12–14 means that Sch 3 conditions can be modified, including the effective consent provision. This power has been exercised through the General Direction 0006, ‘Import and export of gametes and embryos’. Following the end of the 11-month Implementation Period following the UK’s exit from the EU on 31 January 2020, General Direction 0006 now has a ‘GB’ (Great Britain) version and a ‘NI’ (Northern Ireland) version in order to reflect the position established by the Northern Ireland Protocol.2 There are various requirements that need to be met for import or export to be possible for centres in either Great Britain or Northern Ireland. The most recent version of the Code of Practice provides specific guidance to centres seeking to export gametes or embryos for patients who may be considering commercial surrogacy abroad. At para 14.15 the Code states: ‘Centres seeking to export gametes or embryos for patients who may be considering commercial surrogacy abroad are not precluded from doing so provided they can satisfy the requirements of General Direction 0006 … Treatment provided to a surrogate and intended parents would not be unlawful in the UK notwithstanding that they may have entered into a commercial arrangement thus, the possibility of commercial surrogacy abroad should not be an impediment to export, provided the requirements of General Direction 6 can be satisfied.’3 1

The Human Fertilisation and Embryology (Amendment) Regulations 2018 (SI 2018/334), reg 5(4)(b) amended the HFEA 1990 to add some new subsections in relation to directions made under s 24(4). See HFEA 1990, s 24(4AA)–(4AF). 2 To access version 9 and version 1 of the GB and NI versions of General Direction 0006 respectively, see bit.ly/2K5HNln. See also para 11.6 above on the post-‘Brexit’ legislative position in light of the Northern Ireland Protocol. 3 HFEA, Code of Practice (9th edn, October 2021), available at https://bit.ly/HFEA-Code-9th. See also paras 11.41 and 11.45 below.

11.20 All countries outside the UK, including those in the EU/EEA, are now ‘third countries’ to Great Britain. Consequently, the requirements in the Schedules to General Direction 0006(GB) must be met in order for licensed 419

11.20  Assisted Reproduction centres in Great Britain (England, Wales and Scotland) to import or export gametes or embryos from or to a centre in a ‘third country’. Such requirements include those relating to (inter alia) centre accreditation, quality management and traceability systems, identifiability, awareness of legal issues relating to parentage in order to give informed consent, and provisions relating to effective consent being in place which has not been withdrawn. The receiving centre in Great Britain must obtain written confirmation from the third country supplier that it meets all of these requirements. Crucially, a centre in Great Britain importing from a third country must make an application to the HFEA for a certificate under HFEA 1990, s 24(4AD) – which is referred to by the HFEA as an importing tissue establishment (‘ITE’) import certificate – before any such import takes place. No such certification is required for exports. In contrast, centres in Northern Ireland do not require pre-approval through an ITE import certificate for gamete and embryo imports from EU/EEA countries, which reflects the pre-‘Brexit’ position. 11.21 Where the conditions in the relevant General Direction cannot be met, the s 24(4) power can be exercised to give Special Directions. Decisions in relation to Special Directions are made by the Statutory Approvals Committee (‘SAC’) populated by HFEA members. Centres, but not patients, can apply to the SAC for a Special Direction. Before applying for a Special Direction, a clinic will need to make an assessment of whether it considers that there is a justifiable reason as to why the import or export should take place, despite not meeting the General Direction requirements.1 The Court of Appeal in R (M) v Human Fertilisation and Embryology Authority2 allowed an appeal against the dismissal of a judicial review of a decision of the HFEA (SAC) to refuse to approve the proposed export and use of the frozen eggs of the deceased daughter of the claimants, remitting the decision to the HFEA for further consideration.3 1 2 3

For more information on the SAC, see HFEA, Standing orders from 31 January 2019, para 3: available at bit.ly/342A6DB. For more information on Special Directions, see HFEA, Special Directions applications: available at bit.ly/2W0QIXX. [2016] EWCA Civ 611, [2017] 4 WLR 130. See further on the issue of exporting gametes without consent for posthumous use (particularly in relation to Art 8 of the ECHR) the cases of R v Human Fertilisation and Embryology Authority, ex p Blood [1999] Fam 151 and L v Human Fertilisation and Embryology Authority [2008] EWHC 2149 (Fam), [2008] 2 FLR 1999, discussed at para 11.27 below.

Adults lacking capacity 11.22 Despite the general requirement for a consent under Sch 3 to the HFEA 1990 to be in writing and signed by the person giving it,1 there is an exception for persons who are unable to sign because of illness, injury or physical disability. A consent under Sch 3 by a person unable to sign, and any notice by such a person varying or withdrawing such a consent, is to be taken to comply with the requirement of para 1(1) as to signature ‘if it is signed at the direction of the person unable to sign, in the presence of the person unable to sign and in the presence of at least one witness who attests the signature.’2 Whilst this provision does not define the phrase ‘unable to sign because of illness, injury or physical disability’, it is likely that a person’s lack of capacity under the Mental Capacity Act 2005 (‘MCA’) will be sufficient to satisfy this condition. This has been recently confirmed by the courts. In Y v A Healthcare 420

Assisted Reproduction 11.22 NHS Trust,3 a woman (‘Y’) applied to the Court of Protection for a declaration that, in respect of her husband (‘Z’) who lacked capacity under the MCA, it would be lawful and in his best interests for his sperm to be retrieved and stored prior to his death so that Y could use it to undergo IVF treatment to have a second child. To the authors’ knowledge, this was the first case of its kind. Following discussions about wanting a sibling for their son, Y and Z decided to investigate assisted conception in 2018 and Z provided a sperm sample for the purpose of sperm analysis. The couple filled out some paperwork for IVF treatment, only some of which was made available to the Court. Y specifically recalled that they discussed what they would do if Z died whilst they were undergoing fertility treatment; Z agreed that he would want Y to go ahead with it if that is what she wanted. Z was involved in a road traffic accident later that year, which caused him to suffer a catastrophic brain injury. He was on life support and had a bleak prognosis; he was suspected to be brain dead. Y wanted to retrieve Z’s sperm before he died in order to continue to have the IVF treatment on which they were both agreed. Given the urgency of the medical time frame, the court was provided with ‘scant information as to whether Z had, in fact, given consent to the storage and use of his sperm in compliance with the strict requirements of Schedule 3 of the HFE Act’.4 The court was therefore proceeding on the basis that the necessary consent forms did not in fact exist. However, none of the parties involved in the application (including the HFEA5) objected to the order that was sought. Knowles J considered it beyond doubt that, by reason of his catastrophic brain injury, Z lacked the capacity to give the consents sought in relation to fertility treatment. He was also unlikely to recover capacity because, as a result of his injury, he would never recover any function or awareness or regain consciousness. As such, the court’s decision-making powers under s 16 of the MCA were engaged.6 The court accepted Y’s evidence that both she and Z had a settled intention to have a sibling for their son, that they had discussed the posthumous use of Z’s sperm, and that he had agreed to the same. On this basis, Knowles J was satisfied that: ‘Z would have chosen to allow clinicians to retrieve his sperm so that it might be stored and then used after his death so that his little boy might be able to have a brother or sister’.7 The draft order put before the court only related to the storage of Z’s sperm. However, Knowles J considered it ‘undesirable and inconsistent with the facts of this case for the court not to authorise the execution of consents for use as well as storage prior to Z’s death’.8 Therefore, the final order that was made: ●●

●●

declared that it was lawful for a doctor to retrieve Z’s gametes and lawful for those gametes to be stored both before and after his death on the signing of the relevant consents to storage and use, and that it was lawful for his gametes and any embryos formed from his gametes to be used after his death; declared that the court was satisfied that the consent requirements of the HFEA 1990, Sch 3 were met in those circumstances. 421

11.22  Assisted Reproduction The order provided for a relative to sign the relevant consents in accordance with the provisions of the HFEA 1990, Sch 3, para 1(2). The decision – which was made under great urgency – does not expressly address the potential difficulties posed to this approach by the MCA s 27(1)(h) and (i) which provides: ‘27 Family relationships etc. ‘(1) Nothing in this Act permits a decision on any of the following matters to be made on behalf of a person …. (h)  giving a consent under the Human Fertilisation and Embryology Act 1990, (i)  giving a consent under the Human Fertilisation and Embryology Act 2008.’9 1 See para 11.16 above. 2 HFEA 1990, Sch 3, para 1(2). 3 [2018] EWCOP 18, [2019] 1 FLR 679 (Knowles J). 4 Ibid, para 20. 5 Although the HFEA did not object to the application and order sought ‘in the exceptional circumstances of this case’, it was made clear to the court that the HFEA did not wish to set a precedent and, accordingly, it did not consent to the course of action proposed in this case. 6 n3 above, paras 9 and 22. 7 Ibid, para 24. 8 Ibid, para 27. 9 See the excellent commentary on 39 Essex Chambers’ website which notes; ‘we observe that there are two issues which on their face would appear to have stood as a bar to the order being made. Neither were addressed in the judgment, although it may well have been that they were canvassed before the court … The first is that it is difficult to understand from the judgment itself how the court came to the view that the s.16 MCA 2005 order would comply with the terms of paragraph 1(2) of Schedule 3 insofar as that paragraph requires the consent given on behalf of Z to be at his “direction.” There is no doubt that the court was of the view that Z himself would have consented to the storage of the sperm had he been able to. Paragraph 1(2) however seems to demand more than simply identifying what the incapacitated person would have chosen to do. It requires the incapacitated person (here, Z) to direct that the third party gives the consent on his behalf. Given the circumstances of Z’s loss of capacity (sudden and unpredicted) there would have been no opportunity for such direction … The second – linked – problem is that s.27(2)(i) MCA 2005 specifically prohibits anyone, including the court, from “giving a consent under the Human Fertilisation and Embryology Act 2008.” It may have been that the court considered that it was not, in fact, consenting on Z’s behalf within the terms of the HFEA 1990, but directing (on Z’s behalf) a relative to execute that consent. That undoubtedly represents a purposive (some might say strained) reading of the wording ‘consent’ in s.27(2)(i) MCA 2005, which on its face and in its context is addressed to the material giving of consent (i.e. the fact of consenting to storage) rather than the technical execution of the written consent document’: see bit.ly/3Li24iw at p 8.

Storage periods 11.23 The length for which gametes, embryos and human admixed embryos can be kept in storage is also subject to regulation. The maximum storage period (unless it satisfies requirements of regulations for a shorter or longer period of storage) for gametes,1 embryos2 and human admixed embryos3 is a ‘period not exceeding ten years as the licence may specify’. In response to the potential negative impact of the coronavirus pandemic on patients storing gametes and embryos and on research projects involving the use of donated embryos, the Human Fertilisation and Embryology (Statutory Storage Period for Embryos and Gametes) (Coronavirus) Regulations 2020

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Assisted Reproduction 11.23 SI 2020/566) extended the statutory storage period to 12 years. The Regulations, which came into force on 1 July 2020, provide for a one-off extension of the storage period by two years where: (a) (b)

the gametes or embryos are being stored on licensed premises on 1 July 2020; and the person who provided the gametes or persons whose gametes were used to create the embryos have consented in writing to the gametes or embryos being stored for at least 12 years. The written consent can be provided before, on or after 1 July 2020.

The HFEA has developed a new consent form for use where the storage period is to be extended to 12 years. However, it is important to note that, at the time of writing, for patients who store their gametes or embryos for the first time after 1 July 2020, the Regulations will not apply.4 Conditions of storage include, pursuant, to s 14(1)(c) and (d): ‘(c) that no gametes, embryos or human admixed embryo shall be kept in storage for longer than the statutory storage period and, if stored at the end of the period, should be allowed to perish, and ‘(d) that such information as the Authority may specify in directions as to the persons whose consent is required under Schedule 3 to this Act, the terms of their consent and the circumstances of the storage and as to such other matters as the Authority may specify in directions shall be included in the records maintained in pursuance of the licence.’ The relevant Licence Conditions in relation to length of storage (in both Great Britain and Northern Ireland) are as follows:5 T79: No gametes or embryos must be kept in storage for longer than the statutory storage period and, if stored at the end of the period, must be allowed to perish. T80: The statutory storage period in respect of gametes is such period not exceeding ten years as the licence may specify. T81: The statutory storage period in respect of embryos is such period not exceeding ten years as the licence may specify. T82: Regulations may provide that licence conditions T80 and T81 must have effect as if for ten years there were substituted– such shorter period, or in such circumstances as may be specified in the relevant Regulations, such longer period, as may be specified in the relevant Regulations.6 1 2 3 4

HFEA 1990, s 14(3). Ibid, s 14(4). Ibid, s 14(4A). The CVS consent form is available at: bit.ly/2Xx0yVL. See also Chair’s Letter CH(20)01 (COVID-19 storage extension Regulations) and the Human Fertilisation and Embryology (Statutory Storage Period for Embryos and Gametes) (Coronavirus) Regulations 2020. 5 For the Standard Licence Conditions for treatment and storage licences in Great Britain, see bit.ly/3xN5C4L. For the Standard Licence Conditions for treatment and storage licences in Northern Ireland, see bit.ly/2UfNvGI. 6 For more information on storage, see the HFEA’s Knowledge Base, available at bit.ly/ 373eNnb.

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11.24  Assisted Reproduction

Extension of storage periods 11.24 The Human Fertilisation and Embryology (Statutory Storage Period for Embryos and Gametes) Regulations 2009 (SI 2009/1582) allow for an extension of the maximum statutory storage period, where certain requirements are satisfied for those with premature infertility.1 The Code of Practice provides the following guidance as to the application of these Regulations:2 ‘17.19: The centre should inform patients wishing to store gametes or embryos for more than 10 years of the criteria set out in the 2009 regulations and how these must be satisfied. It is important that, in the case of patients who wish to store gametes or embryos for more than 10 years, centres take steps to satisfy the requirements of the 2009 regulations before the patient’s current storage period expires. ‘17.20: To satisfy the regulations for extended storage periods, the centre should seek a written medical opinion to certify that one of the gamete providers, the woman who is to be treated with the gametes, or the person who the gametes or embryos have been allocated to, is prematurely infertile or likely to become prematurely infertile. This medical opinion should be obtained before the current storage period expires. In those cases where the gametes or embryos are being stored for an extended storage period, the further medical opinion must be obtained within 10 years of the previous medical opinion, ie before expiry of 10 years from the date of the previous medical opinion. The opinion must be provided by a medical practitioner registered with the General Medical Council (GMC). A medical opinion from an overseas medical practitioner who is not registered with the GMC does not satisfy the requirements of the 2009 Regulations. ‘17.21: The centre should seek the written medical opinion on premature infertility whilst the gamete provider is alive. However, if the gamete provider (who has provided consent to extended storage) dies before a medical opinion is in place, the medical opinion may be sought after death provided it is based on evidence that the person would have satisfied the premature infertility criteria when they were alive. Although the medical opinion may be provided after the gamete provider’s death, it must nevertheless be provided within the relevant period; that is within the 10 year statutory storage period, or in the case of gametes or embryos that are being stored pursuant to an extended period under the 2009 Regulations, within 10 years of the most recent medical opinion. ‘17.22: Whether a person is, or is likely to become, prematurely infertile is a clinical judgment taking into account all relevant considerations and information known to the clinician at the time. Patients whose fertility has declined naturally with age will not be able to satisfy the requirement as to premature infertility. ‘17.23: Provided the provisions of the 2009 regulations have been met, the centre can store the gametes and embryos for a further 10 years from the date the criteria are met. The centre can extend the storage period by further 10-year periods (up to the maximum of 55 years) if it is shown at any time within each extended storage period that the criteria continue to be met.’

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Assisted Reproduction 11.25 1 Human Fertilisation and Embryology (Statutory Storage Period for Embryos and Gametes) Regulations 2009, reg 3. See also reg 3A, which allows for an extension of the statutory storage period for premature infertility for a reason relating to coronavirus: this regulation was added by the Human Fertilisation and Embryology (Statutory Storage Period for Embryos and Gametes) (Coronavirus) Regulations 2020, reg 8. 2 HFEA, Code of Practice (9th edn, October 2021) at guidance note 17 (storage of gametes and embryos), available at bit.ly/HFEA-Code-9th.

Evans – one-party withdrawal of consent pre-embryo transfer 11.25 In Evans v UK1 the applicant’s complaint was that the consent provisions of HFEA 1990 prevented her from using the embryos she and her partner (J) had created together (whilst they were still in a relationship) and thus – given her particular circumstances (her ovaries having been removed due to pre-cancerous cells) – from ever having a child to whom she was genetically related. J had notified the clinic of the couple’s separation after their relationship had ended and stated that he did not consent to further use of the embryos. Ms Evans sought an injunction requiring J to restore his consent. Her application was dismissed, likewise her appeal to the Court of Appeal, and leave to appeal to the House of Lords was refused. Ms Evans took her case to the Grand Chamber of the ECtHR, which noted: ‘The dilemma central to the present case is that it involves a conflict between the Art 8 rights of two private individuals: the applicant and J. Moreover, each person’s interest is entirely irreconcilable with the others, since if the applicant is permitted to use the embryos, J will be forced to become a father, whereas if J’s refusal or withdrawal of consent is upheld, the applicant will be denied the opportunity of becoming a genetic parent. In the difficult circumstances of this case, whatever solution the national authorities might adopt would result in the interests of one or the other parties to the IVF treatment being wholly frustrated. ‘In addition, the Grand Chamber, like the Chamber, accepts the Government’s submission that the case does not involve simply a conflict between individuals; the legislation in question also served a number of wider, public interests, in upholding the principle of the primacy of consent and promoting legal clarity and certainty, for example.’2 The Grand Chamber determined that, in this ethically sensitive area, individual states should be afforded a very wide margin of appreciation, stating: ‘since the use of IVF treatment gives rise to sensitive moral and ethical issues against a background of fast-moving medical and scientific developments, and since the questions raised by the case touch on areas where there is no clear common ground amongst the Member States, the Court considers that the margin of appreciation to be afforded to the respondent State must be a wide one.’3 In considering compliance with Art 8, the Grand Chamber made the following observation: ‘The fact that it is now technically possible to keep human embryos in frozen storage gives rise to an essential difference between IVF and fertilisation through sexual intercourse, namely the possibility of allowing 425

11.25  Assisted Reproduction a lapse of time, which may be substantial, to intervene between creation of the embryo and its implantation in the uterus. The Court considers that it is legitimate – and indeed desirable – for a state to set up a legal scheme which takes this possibility of delay into account.’4 And concluded in relation to Art 8: ‘As regards the balance struck between the conflicting Article 8 rights of the parties to the IVF treatment, the Grand Chamber, in common with every other court which has examined this case, has great sympathy for the applicant, who clearly desires a genetically related child above all else. However, given the above considerations, including the lack of any European consensus on this point, it does not consider that the applicant’s right to respect for the decision to become a parent in the genetic sense should be accorded greater weight than J’s right to respect for this decision not to have a genetically related child with her. ‘The Court accepts that it would have been possible for Parliament to regulate the situation differently. However, as the Chamber observed, the central question under Article 8 is not whether different rules might have been adopted by the legislature, but whether, in striking the balance at the point at which it did, Parliament exceeded the margin of appreciation afforded to it under that Article. ‘The Grand Chamber considers that, given the lack of European consensus on this point, the fact that the domestic rules were clear and brought to the attention of the applicant and that they struck a fair balance between the competing interests, there has been no violation of Art 8 of the Convention.’5 This decision exhausted Ms Evans’ legal remedies and therefore the embryos could not be used. It is interesting to compare and contrast the situation where reproduction is not assisted. In a situation where an embryo is created in utero leading to implantation and pregnancy, the woman has autonomy over her body and decisions.6 That is not the framework of the assisted reproduction legislation: each party has the freedom to consent in relation to their gametes and consent can be withdrawn up until the point of transfer of the embryo into the woman.7 In Yearworth v North Bristol NHS Trust,8 the question for the court was whether sperm could constitute property in the context of a negligence claim. The Court of Appeal considered the importance of HFEA 1990’s consent provisions in allowing individuals to decide what to do with their gametes and determined that, in the specific circumstances of the case, stored gametes were equivalent to property: ‘[t]hus the Act recognises in the men a fundamental feature of ownership, namely that at any time they can require the destruction of the sperm.’9 The HFEA 2008 amended the HFEA 1990 to introduce a provision at Sch 3, para 4A which, inter alia, makes it lawful for embryos to continue to be stored for up to 12 months after one party gives notice of withdrawal of his consent to the use of an embryo(s) created for the purpose of treatment. This coolingoff period allows time for the parties to resolve issues before any embryos are destroyed.10 1 2

[2007] 1 FLR 1990, (2008) 46 EHRR 34. Ibid, paras 73 and 74.

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Assisted Reproduction 11.28 3 Ibid, para 81. 4 Ibid, para 84. 5 Ibid, paras 90–92. 6 See Chapter 9: Abortion, para 9.24; Chapter 12: Managing Pregnancies, para 12.2. 7 HFEA 1990, Sch 3, para 4. 8 [2009] EWCA Civ 37, [2010] QB 1. 9 Ibid, para 45 (Lord Judge CJ). 10 See HFEA, Code of Practice (9th edn, October 2021) at guidance note 5, p 59. Available at bit.ly/HFEA-Code-9th When Ms Evans had exhausted her domestic rights, she had to invoke (and did so successfully) the powers under Rule 39 of the Rules of Court of the European Court of Human Rights for Interim Measures to prevent the destruction of the embryos pending the determination of her application by the court.

Consent: other key cases 11.26 There have been a number of cases both pre- and post-Evans which address consent issues in the following contexts: 11.27 An absence of written consent concerning retrieval, storage and export of gametes retrieved from a spouse who was in a coma/deceased: ●●

●●

●●

1 2 3

R v Human Fertilisation and Embryology Authority, ex p Blood:1 under the previous statutory regime, the Court of Appeal gave a specific direction permitting the export of the applicant’s deceased husband’s sperm under s 24 of the HFEA 1990. L v Human Fertilisation and Embryology Authority:2 Charles J expressed a preliminary view only that it was not possible lawfully to remove, or authorise the removal of, gametes from a dead person who had not given an effective advance consent to this. Y v A Healthcare NHS Trust:3 Knowles J declared that it was lawful and in the best interests of a married man, Z, who had suffered a catastrophic brain injury and was suspected to be brain dead, to have his sperm retrieved, stored and later used by his wife so that she could have a sibling for their son after his inevitable death. In this case, valid written consent had not been provided by Z and the court was asked to authorise the taking of the relevant consent under Sch 3 to the HFEA 1990, pursuant to its powers under the MCA. Pursuant to s 16(2)(a) of the MCA, the court directed that a relative of Z had the authority to sign the relevant consents for storage of Z’s sperm in accordance with para 1(2) of Sch 3 to the HFEA 1990. [1999] Fam 151. [2008] EWHC 2149 (Fam), [2008] 2 FLR 1999. [2018] EWCOP 18, [2019] 1 FLR 679. See Para 11.22 above.

11.28 Issues relating to the extent of documented consent in relation to length of storage of gametes: ●●

Warren v Care Fertility (Northampton) Ltd:1 Hogg J held there had been a failure by a fertility clinic to provide the applicant’s (now deceased) husband with the appropriate statutorily required information before he gave his consent to the storage of his gametes. There was no doubt that had he had such information he would have consented to storage beyond ten years and obtained medical evidence about infertility. Whilst the regulations required written consent for storage beyond ten years and certification by a medical practitioner that the donor ‘is … or is likely to become prematurely infertile’, these regulations had to 427

11.28  Assisted Reproduction be interpreted purposively and compatibly with the claimant’s right under Art 8 of the ECHR to seek to become a parent by her deceased husband. Thus, a declaration was granted that it was lawful for the claimant’s husband’s gametes to be stored beyond ten years. 1

[2014] EWHC 602 (Fam), [2015] Fam 1.

11.29 Consent provisions relating to parenthood and the completeness or otherwise of documentary forms or evidence relating to consent as stored (or expected to be stored by a centre): ●●

●●

X v Y:1 Theis J allowed a man’s application for a declaration of parentage of a child conceived using donor sperm held at a licensed clinic. The clinic in fact did not hold on file the signed statutory consent indicating the man’s intention to become the legal father of a child conceived using his donor sperm. As the judge found that in fact the relevant consent had been appropriately obtained and signed, the failure by the clinic thereafter to retain the record did not amount to a breach of the licence such as to invalidate the consent that in fact had been given.2 In re A (Legal Parenthood: Written Consents):3 Munby P granted declarations of parentage in seven cases. It was held that following X v Y (above) the court could act on parol evidence to establish that a statutory form which could not be found was in fact properly completed and signed before the treatment began. The form should be treated as ‘a single composite document’ which had to be read and construed as a whole. Thus if the woman is consenting to the treatment and, in the same document, her partner was consenting to becoming the parent of the child resulting from that treatment, it followed by necessary implication that the woman was consenting to her partner being the other parent. A mere failure to comply with a direction that a particular form had to be used could not of itself, invalidate what would otherwise be a valid consent. Munby P understandably concluded that:

‘The picture revealed is one of what I do not shrink from describing as widespread incompetence across the sector on a scale which must raise questions as to the adequacy if not of the HFEA’s regulation then of the extent of its regulatory powers. That the incompetence to which I refer is, as I have already indicated, administrative rather than medical is only slight consolation, given the profound implications of the parenthood which in far too many cases has been thrown into doubt.’4 ●●

●●

M v W:5 Theis J grated a declaration of parentage to the former samesex partner of a woman who had given birth to a child through IVF treatment with donor sperm. Although the two women had signed written consent forms at the fertility clinic before the HFEA 2008 came into force, they had not signed the prescribed HFEA forms. The court held that the wording of their forms was similar to that which had been approved by the court under the 2008 Act: ‘The key is the fact that the document is signed makes clear it establishes legal parenthood.’6 PQ v RS (Legal Parenthood: Written Consent):7 The court was asked to consider an application for a declaration of parentage by PQ and a cross-application of non-parentage by RS in relation to two children conceived following fertility treatment. The parties had been in a relationship at the time of the fertility treatment and conception of the 428

Assisted Reproduction 11.30

●●

children but had subsequently separated. The parties believed that prior to treatment they were consenting to PQ becoming a parent of any child born as a result of the treatment and that they had signed appropriate forms to ensure they both became parents. An audit by the HFEA revealed that the form addressing ‘consent to being a legal parent’ had been incorrectly completed so that PQ and RS’s name appeared in the wrong parts. When contacted by the clinic to explain the consequences of this, PQ and RS took no further action. Following their separation and a deterioration in their relationship, RS changed the children’s name without informing PQ. Relying on his lack of parental status, PQ then sought to avoid liability for child maintenance. The court held that the errors on the form were clear and obvious and could be corrected by way of rectification to reflect the agreement of PQ and RS at the time of the treatment. A declaration of parentage was therefore made in favour of PQ. Re Human Fertilisation and Embryology Act 2008 (Case AL):8 The court made a declaration that a father was the legal parent of a child conceived following treatment provided by a fertility clinic, where the clinic had failed to ensure that the relevant consent form had been signed. The court accepted that an internal consent form signed by the father met the statutory requirements for consent.

1

X v Y (St Bartholomew’s Hospital Centre for Reproductive Medicine intervening) [2015] EWFC 13, [2016] PTSR 1. 2 Ibid, para 61, Theis J was satisfied that the breach of record keeping did not ‘invalidate the licence in such a way that offends against section 37’ HFEA 1990, noting: (1) the s 37(1)(a) notice needed to be completed prior to treatment; (2) provided all relevant requirements were complied with, by s 36 of the HFEA 2008 at the time of the birth of the child the man was treated as the legal father of the child; (3) given this, ‘it would be wholly inconsistent with that provision, and the underlying intention to provide certainty, if that status could then be removed from the father and the child in the event of the clinic mislaying the consent’ many years later; (4) the requirement to keep records is simply by way of a direction pursuant to s 23 of the HFEA 1990; (5) there was no evidence in the enacting history of s 37 to suggest ‘any intention to create an additional test of compliance by the clinic with directions given pursuant to s 23 and the acquisition of paternity’. See also Re G (Human Fertilisation and Embryology Act 2008) [2016] EWHC 729 (Fam), [2016] 4 WLR 65; Re Human Fertilisation and Embryology Act 2008 (Case I) [2016] EWHC 791 (Fam), [2017] 1 FLR 998; Re M (Human Fertilisation Embryology Act 2008) [2016] EWHC 1572 (Fam). 3 [2015] EWHC 2602 (Fam), [2016] 1 WLR 1325. 4 Ibid, para 8 (Sir James Munby P). And note that, in relation to one centre, it was identified that of ‘184 patients who had undertaken fertility treatment with donor sperm since April 2009, when the 2008 Act was implemented, there were 13 cases (7%) where legal parenthood was in issue’ (para 7). 5 [2019] EWHC 648 (Fam), [2019] Fam 414. 6 Ibid, para 70. 7 [2019] EWFC 65. 8 [2018] EWHC 1300 (Fam). Sir James Munby P acknowledged the distress, alarm and fear caused to an ordinary person confronted with the news that something is wrong with the paperwork some years after the birth of their child. He stated at para 14: ‘No parent should ever be put in such a situation because of this kind of bureaucratic incompetence.’

11.30 Article 8 of the ECHR features prominently in these cases and the courts’ approach is well-summarised in one of the arguments presented in X v Y:1 ‘[The Applicant and Respondent] make the following powerful point that a restrictive interpretation of section 37 in these cases makes paternity “precarious”. This is because, in reality, the uncertainty is almost entirely outside the control of X and Y. Although section 37 of the 2008 Act puts 429

11.30  Assisted Reproduction the onus on the prospective parents to give the requisite notice, the law does not expect them to know in advance what the law is or to be aware of this particular duty, but places a prior onus on the clinic to inform and counsel them and to provide them with the appropriate forms. Parents have no effective control over the clinic’s compliance with the conditions of its licence or its retention of the necessary consents. ‘Ms Marisa Allman, on behalf of the advocate to the court, cautions that such a course requires careful consideration. She draws the court’s attention to the differing approaches taken in previous cases depending on the nature of the provision to be ‘read down’; whether there is a dispute and whether there are competing Article 8 rights to be balanced. In A v P,2 In re Warren3 and In re X (A Child) (Parental Order: Time Limit)4 there was no conflict between the various rights in those cases, and the relevant provisions were applied in a way which gave effect to the Article 8 rights of all concerned. In contrast, however, in both Leeds Teaching Hospitals NHS Trust v A5 and Evans v Amicus Healthcare Ltd6 there were clear conflicts and in each case the court was not prepared to apply the relevant provisions in what was said by the applicants in those cases to be a purposive way.’ 1 2 3 4 5 6

Theis J in X v Y [2015] EWFC 13, [2016] PTSR 1, paras 47 and 48. [2011] EWHC 1738 (Fam). [2014] EWHC 602 (Fam), [2015] Fam 1. [2014] EWHC 3135 (Fam). [2003] 1 FLR 1091. [2004] 3 WLR 681. See para 11.25 above.

E  CONSCIENTIOUS OBJECTION 11.31 As with the legislation pertaining to abortion1 there is a conscientious objection provision within the HFEA 1990. Section 38(1) provides as follows: ‘No person who has a conscientious objection to participating in any activity governed by this Act shall be under any duty, however arising, to do so.’ The burden of proof of conscientious objection rests on the person seeking to rely on it (s 38(2)). Guidance Note 29, ‘Treating people fairly’ within the 9th edition of the Code of Practice provides information and guidance on the interpretation of the conscientious objection provision within the Act.2 In particular, prospective employees should be made aware of this provision at interview and, if members of staff conscientiously object to providing a particular licensed activity governed by HFEA 1990, the centre should ensure that patients are given an explanation of the same and are referred to alternative sources of treatment. 1 See Chapter 9: Abortion, para 9.6. 2 See HFEA, Code of Practice (9th edn, October 2021) at guidance note 29, pp 277–278. Available at bit.ly/HFEA-Code-9th. This mirrors the approach required by the Supreme Court in Montgomery v Lanarkshire Health Board [2015] UKSC 11. See in particular para 87, per Lord Kerr and Lord Reed: ‘The doctor is therefore under a duty to take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative or variant treatments. The test of materiality is whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it’ (our emphasis).

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Assisted Reproduction 11.33

F  BIRTH MOTHER 11.32 Section 27 of the HFEA 1990 provides that the woman who gives birth to the child is the child’s mother, regardless of genetics:1 ‘(1) The woman who is carrying or has carried a child as a result of the placing in her of an embryo or of sperm and eggs, and no other woman, is to be treated as the mother of the child. ‘(2) Subsection (1) does not apply to any child to the extent that the child is treated by virtue of adoption as not being the woman’s child. ‘(3)  Subsection (1) applies whether the woman was in the United Kingdom or elsewhere at the time of the placing in her of the embryo or the sperm and eggs.’ 1

For a fuller exposition of the provision of legal parenthood within HFEA 1990, see Guidance Note 6 (‘Legal parenthood’) in HFEA, Code of Practice (9th edn, October 2021) p 62, available at bit.ly/HFEA-Code-9th; and Chapter 15 on Assisted Conception in Emily Jackson, Medical Law: Texts, Cases and Materials (5th edn, OUP, 2019).

G  THE WELFARE CLAUSE 11.33 Section 13(5) of the HFEA 1990 makes it a condition of treatment licences that: ‘[a] woman shall not be provided with treatment services unless account has been taken of the welfare of the child who may be born as a result of the treatment (including the need of that child for supportive parenting) and of any other child who may be affected by the birth.’ This is commonly known as the ‘welfare clause’. Treatment services are defined by s 2(1) as ‘medical, surgical or obstetric services provided to the public or a section of the public for the purpose of assisting women to carry children.’ Section 25(2) mandates that the HFEA Code of Practice includes guidance pertaining to the application of the welfare clause. Hence, the Code provides guidance to licensed centres on the welfare of the child assessment process generally and specifically in relation to surrogacy arrangements.1 It will always be important to review that guidance when updated editions of the Code are published. The general guidance in the 9th edition of the Code is set out below:2 ‘8.2 The centre should have documented procedures to ensure that proper account is taken of the welfare of any child who may be born as a result of treatment services, and any other child who may be affected by the birth. ‘8.3 The centre should assess each patient and their partner (if they have one) before providing any treatment and should use this assessment to decide whether there is a risk of significant harm or neglect to any child referred to in 8.2. … ‘8.5 The centre should repeat the assessment if: (a) the centre has been out of contact with the patient for two years or more (b) the patient has a new partner (c) a child has been born to the patient since the previous assessment, or 431

11.33  Assisted Reproduction (d) the centre has reason to believe that the patient’s medical or social circumstances have changed significantly.’ The Code stresses that prospective patients are entitled to a ‘fair assessment’. As such, centres are expected to consider their wishes, and not carry out an assessment in such a way that discriminates against them on grounds of age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex or sexual orientation.3 Section 8.14 of the Code provides further details on the ‘factors to take into account during the assessment process’ as follows: ‘The centre should consider factors that are likely to cause a risk of significant harm or neglect to any child who may be born or to any existing child of the family. These factors include any aspects of the patient’s or (if they have one) their partner’s: (a) past or current circumstances that may lead to any child mentioned above experiencing serious physical or psychological harm or neglect, for example: (i) previous convictions relating to harming children (ii)  child protection measures taken regarding existing children, or (iii) violence or serious discord in the family environment (b) past or current circumstances that are likely to lead to an inability to care throughout childhood for any child who may be born, or that are already seriously impairing the care of any existing child of the family, for example: (i) mental or physical conditions (ii) drug or alcohol abuse (iii) medical history, where the medical history indicates that any child who may be born is likely to suffer from a serious medical condition, or (iv)  circumstances that the centre considers likely to cause serious harm to any child mentioned above.’ In relation to the requirement under s 13(5) to take specific account of ‘the need of that child for supportive parenting’, s 8.15 states as follows: ‘When considering a child’s need for supportive parenting, centres should consider the following definition: ‘Supportive parenting is a commitment to the health, well being and development of the child. It is presumed that all prospective parents will be supportive parents, in the absence of any reasonable cause for concern that any child who may be born, or any other child, may be at risk of significant harm or neglect. Where centres have concern as to whether this commitment exists, they may wish to take account of wider family and social networks within which the child will be raised.’ The Code of Practice at 8.18 provides that the centre should refuse treatment if it: ‘(a) concludes that any child who may be born or any existing child of the family is likely to be at risk of significant harm or neglect, or

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Assisted Reproduction 11.34 (b)  cannot obtain enough information to conclude that there is no significant risk.’ This is arguably quite an onerous task for a centre to undertake, but it is clearly in line with the HFEA’s licensing requirements.4 At present, there is no guidance as to what constitutes ‘significant harm’ or ‘serious harm’, as to how ‘violence or serious discord in the family environment’ and ‘mental or physical conditions’ are defined, or as to the level of risk that should lead to a refusal of treatment. The assessment process therefore relies to a great extent on centres’ discretion and own interpretation of the Code.5 1 See para 11.43 below. 2 HFEA, Code of Practice (9th edn, October 2021) p 99. Available at bit.ly/HFEA-Code-9th. 3 Ibid, p 100 (section 8.6). 4 Licence condition (treatment and storage) T56: ‘A woman must not be provided with treatment services unless account has been taken of the welfare of any child who may be born as a result of the treatment (including the need of that child for supportive parenting), and of any other child who may be affected by the birth.’ The licence conditions are available at bit. ly/3CNI3MN. 5 See Ellie Lee et al, Assessing child welfare under the Human Fertilisation and Embryology Act 2008: a case study in medicalisation? (2014) 36(4) Sociology of Health & Illness 500 for a case study describing how welfare of the child assessments are undertaken in practice. Available at bit.ly/3iJtcLl.

H  POSTHUMOUS GAMETE USE 11.34 Section 39 of HFEA 2008 applies where a man’s sperm or an embryo created with his sperm is used after his death. If the following conditions are satisfied then the man who provided the sperm may be treated as the resultant child’s father for the purposes of birth registration: ‘(1) If (a) the child has been carried by W [a woman] as a result of the placing in her of an embryo or of sperm and eggs or her artificial insemination, (b) the creation of the embryo carried by W was brought about by using the sperm of a man after his death, or the creation of the embryo was brought about using the sperm of a man before his death but the embryo was placed in W after his death, (c) the man consented in writing (and did not withdraw the consent) – (i) to the use of his sperm after his death which brought about the creation of the embryo carried by W or (as the case may be) to the placing in W after his death or the embryo which was brought about using his sperm before this death, and (ii) to being treated for the purpose mentioned in subsection (3) as the father of any resulting child, (d) W has elected in writing not later than the end of the period of 42 days from the day on which the child was born for the man to be treated for the purpose mentioned in subsection (3) as the father of the child, and (e) no-one else is to be treated– (i) As the father of the child by virtue of section 35 or 36 or by virtue of section 38 (2) or (3), or

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11.34  Assisted Reproduction (ii) As a parent of the child by virtue of section 42 or 43 or by virtue of adoption then the man is to be treated for the purpose mentioned in subsection (3) as the father of the child. … ‘(3) The purpose referred to in subsection (1) is the purpose of enabling the man’s particulars to be entered as the particulars of the child’s father in a relevant register of births.’ Section 40 makes similar provision where donated sperm has been used.

I  PREIMPLANTATION GENETIC TESTING 11.35 Preimplantation genetic testing (‘PGT’) – previously known as preimplantation genetic screening (‘PGS’) or preimplantation genetic diagnosis (‘PGD’) – is a method of embryo testing which provides the potential to screen out embryos affected with particular conditions that the HFEA have determined are serious enough to warrant such screening. It is unlawful for embryos (and sperm samples) to be sex-selected for social or other non-medical reasons.1 Schedule 2, para 1ZA(1) of HFEA 1990 provides: ‘A licence under paragraph 1 cannot authorise the testing of an embryo, except for one or more of the following purposes— ‘(a)  establishing whether the embryo has a gene, chromosome or mitochondrial abnormality that may affect its capacity to result in a live birth, ‘(b) in a case where there is particular risk that the embryo may have any gene, chromosome or mitochondrial abnormality, establishing whether it has that abnormality or any other gene chromosome or mitochondrian abnormality. (c) In a case where there is a particular risk that any resulting child will have or develop– (i) a gender-related serious physical or mental disability (ii) a gender-related serious illness, or (iii) any other gender-related serious medical condition establishing the sex of the embryo, (d) in a case where a person (‘the sibling’) who is the child of the persons whose gametes are used to bring about the creation of the embryo (or of either of those persons) suffers from a serious medical condition which could be treated by umbilical cord blood stem cells, bone marrow or other tissue of any resulting child, establishing whether the tissue of any resulting child would be compatible with that sibling, and (e) in a case where uncertainty has arisen as to whether the embryo is one of those whose creation was brought about by using the gametes of particular persons, establishing whether it is.’ 1 HFEA, Code of Practice (9th edn, October 2021) p 114, available at bit.ly/HFEA-Code-9th. See also HFEA 1990, Sch 2, para 1ZB(1): ‘A licence under paragraph 1 cannot authorise any practice designed to secure that any resulting child will be of one sex rather than the other.’ The exceptions to this are on the basis of ‘serious’, ‘gender-related’ disabilities, illnesses or medical conditions: para 1ZB(3)–(4).

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Assisted Reproduction 11.38 11.36 A disability, illness or medical condition is ‘gender-related’ if the HFEA is satisfied that either it affects only one sex or it affects one sex significantly more than the other.1 The requirements that must be satisfied to allow embryo testing to be authorised for licencing purposes are set out in paragraph 1ZA(2): ‘A licence under paragraph 1 cannot authorise the testing of embryos for the purpose mentioned in sub-paragraph 1(b) unless the Authority is satisfied— (a) in relation to the abnormality of which there is a particular risk, and (b) in relation to any other abnormality for which testing is to be authorised under sub-paragraph 1(b), that there is a significant risk that a person with the abnormality will have or develop a serious physical or mental disability, a serious illness or other serious medical condition.’ 1

HFEA 1990, Sch 2, para 1ZA(3).

11.37 The relevant licence conditions (applicable to both Great Britain and Northern Ireland) are T88 and T89 which provide as follows: ‘T88: With respect to any embryo testing programme involving biopsy the centre must ensure that: (a) no embryo is transferred to a woman where that embryo or any material removed from it or from the gametes that produced it, has been subject to a test that supplies the genetic information about the embryo, unless the test has been expressly authorised by the Authority, and (b) any information derived from tests on an embryo, or any material removed from it or from the gametes that produced it, is not used to select embryos of a particular sex for social reasons. ‘T89: With respect to any embryo testing programme the centre must ensure that embryo testing is only being carried out for those genetic conditions that are expressly authorised by the Authority.’ 11.38 Guidance Note 9 on ‘Preimplantation genetic screening (PGS)’ within the 9th edition of the Code of Practice provides assistance to clinics (and others) with the interpretation of the above provisions.1 Guidance Note 10, ‘Embryo Testing and Sex Selection’, is also of relevance and assistance.2 The Statutory Approvals Committee (‘SAC’), which is populated by HFEA members, is tasked with the authorisation and use of PGT for testing for specific conditions. An Explanatory Note, which has been effective since 9 May 2018, sets out that the HFEA has ‘adopted a condition based approach to the approval of applications which means the Statutory Approvals Committee will usually consider applications to perform PGT for an abnormality based on the condition rather than the particular circumstances of any individual or family.’3 Although any licensed centre can offer PGT for an abnormality once the SAC has approved such an application, centres ‘still need to assess, on an individual family basis, whether a particular request for PGD is appropriate’, and in this regard they are referred to the guidance in the Code of Practice.4

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11.38  Assisted Reproduction The Explanatory Note explains that when considering the significance of the risk that an embryo will have an abnormality, the SAC will take account of the ‘penetrance’ of the condition: ‘5.2 The penetrance of a condition is an estimate, in percentage terms, of the likelihood that someone with the abnormality would develop the condition in question. Penetrance is a population based statistic which represents the accumulation of available studies of the incidence of that abnormality in populations of people who are described with the relevant gene mutation.’ 1 HFEA, Code of Practice (9th edn, October 2021) pp 104–107, available at bit.ly/HFEA-Code9th. 2 Ibid, pp 108–117. 3 Human Fertilisation and Embryology Authority Pre-Implantation Diagnostic Testing (‘PGD’) Explanatory Note for Statutory Approvals Committee (9 May 2018) para 2.1. Available at bit. ly/37USbET (see Annex A). 4 Ibid, para 2.2 and n1 above.

11.39 Penetrance can either be ‘full’ or ‘incomplete’. The former is when it is certain that a person with the abnormality will develop the condition (that is, 100% certainty); the latter is when only a subset of people with the abnormality will develop the condition (for example, 40–60%). 11.40 When assessing the seriousness of the disability, illness or condition in question, the Explanatory Note lists a number of factors that the SAC will take into account: ●● ●● ●● ●● ●● ●●

age of onset; symptoms of the disease; whether the condition is treatable; what type of treatment is available for those conditions that can be treated; effect of the condition on quality of life; variability of symptoms.1

The SAC will give reasons for its decision on a PGT application.2 The HFEA maintains an accessible list of all PGT conditions currently approved and those awaiting consideration. At the time of writing, there are over 1000 of these in total.3 1 2 3

Human Fertilisation and Embryology Authority Pre-Implantation Diagnostic Testing (‘PGD’) Explanatory Note for Statutory Approvals Committee (9 May 2018) para 5.3, available at bit. ly/37USbET (see Annex A). Ibid, para 6.1. A list of the PGT conditions is available at bit.ly/HFEA-Conditions.

J SURROGACY 11.41 The principal statutory instrument regulating surrogacy in the UK is the SAA 1985, which prohibits commercial surrogacy arrangements and provides that surrogacy arrangements are unenforceable.1 However, surrogacy is permitted in the UK on a non-commercial basis and is now a well-established and widely accepted form of assisted reproduction.

436

Assisted Reproduction 11.41 In Whittington Hospital NHS Trust v XX2 the Supreme Court noted that, since the SAA was passed in 1985: ‘new techniques have been developed, success rates have improved, and people who are experiencing problems in conceiving or bearing children, or who are in same sex relationships, increasingly turn to assisted reproduction rather than to adoption in order to fulfil their desire to have a family. While treatment is sometimes available on the NHS, much of it is also provided commercially.’3 The UK Government has recognised that surrogacy has an increasingly important role to play in helping people to have children, and the Supreme Court in the Whittington case observed that ‘Government policy has moved strongly in the direction of supporting surrogacy arrangements in appropriate cases’.4 The number of children born through surrogacy in the UK each year is not known but it has been recognised that the number of surrogate births continues to grow.5 The Department of Health and Social Care has published guidelines on the practice of surrogacy, The surrogacy pathway: surrogacy and the legal process for intended parents and surrogates in England and Wales (‘the DHSC guidelines’), in which it is stated: ‘The government supports surrogacy as part of the range of assisted conception options. Our view is that surrogacy is a pathway, starting with deciding which surrogacy organisation to work with, deciding which surrogate or intended parent(s) (IP(s)) to work with, reaching an agreement about how things will work, trying to get pregnant, supporting each other through pregnancy and then birth, applying for a parental order to transfer legal parenthood and then helping your child understand the circumstances of their birth.’6 1 See para 11.7 above. 2 [2020] UKSC 14, [2020] 2 WLR 972. 3 Ibid, para 35 (Lady Hale). The Supreme Court, with Lady Hale presiding, accepted in XX v Whittington that it was permissible in a personal injury claim, in which a woman had been rendered infertile, to award damages for the cost of surrogacy including commercial surrogacy costs to be incurred in California and also including donor egg surrogacy, thereby overturning the earlier Court of Appeal judgment of Hale LJ in Briody v St Helens and Knowsley Area Health Authority [2002] QB 856. In the Court of Appeal in allowing the appeal, McCombe LJ at para 92 cited the skeleton argument for the claimant, which stated ‘Public policy has changed since Briody in 2001. It is no longer appropriate to discriminate in an award of damages between a child born from own egg surrogacy and one born from donor egg surrogacy. The characterisation of the donor egg claim as being impermissibly different from an own egg surrogacy claim does not stand up to analysis in our modern society. Throughout the country there are thousands of children born into families who would be appalled at the thought that simply because they have only a genetic connection to one of their parents, they were somehow of lesser value within the family. Legislation points only one way: that donor egg surrogacies should be seen now to have equal status. The familial orthodoxy, which appears to have underpinned the observations on donor egg surrogacy in Briody, has been consigned to history. Society does not now place a lesser value on children born with only one of their parents’ genes. Same sex relationships can achieve no other result and yet no current public policy would seek to characterise the child as not the child of both of the parents – even though one does not have any biological connection. This is shown by the passage of the Civil Partnerships Act 2004 and the Marriage (Same Sex Couples) Act 2013.’ [Christopher Johnston QC and Claire Watson for the claimant]. 4 Ibid, para 33 (Lady Hale). 5 In the Law Commissions’ Consultation Paper, Building families through surrogacy: a new law (Law Com CP 244, 2019) (Scot Law Com DP 167, 2019), it is noted at para 1.2 that 367

437

11.41  Assisted Reproduction parental orders were granted by the courts of England and Wales in 2018, up from 117 in 2011. See bit.ly/2LhcEMk. 6 Department of Health and Social Care, The surrogacy pathway: surrogacy and the legal process for intended parents and surrogates in England and Wales (updated 23 July 2021), available at: bit.ly/2VNM3MN.

11.42 The DHSC guidelines highlight the legal considerations of which those embarking upon surrogacy should be aware, and encourage intended parents to consider joining one of the main UK not-for-profit surrogacy organisations in order to receive assistance matching surrogates with intended parents (‘IPs’) and support throughout the surrogacy journey. The guidelines set out the main features of the law relating to surrogacy, as follows: ‘Other points to note: ●● ●● ●● ●● ●● ●● ●●

It is a criminal offence to advertise that you are looking for a surrogate or willing to act as a surrogate. It is a criminal offence for third parties (that is, not the surrogate or IP(s)) to advertise that they facilitate surrogacy, although there are some exemptions for not-for-profit organisations. It is a criminal offence for third parties to negotiate the terms of a surrogacy agreement for any payment (for example a solicitor cannot represent IP(s) or surrogates in agreeing the terms). The surrogate (and, if she is married or in a civil partnership, her consenting spouse or civil partner) will be the legal parent(s) of the child at birth. Following the birth, there is a legal process – the parental order process – to transfer legal parenthood from the surrogate to the IP(s). In order to apply for a parental order and transfer legal parenthood, at least one of the IPs or the IP, in the case of an individual applicant, must be genetically related to the baby. It is important that you can meet the conditions of a parental order before you go ahead with a surrogacy arrangement (or if you do not, to take legal advice).’1

Whilst surrogacy agreements are not legally binding, intended parents and surrogates are encouraged to record their intentions in a written agreement that is signed by everyone involved in the arrangement. The DHSC guidelines set out a number of ‘key parts’ of a written surrogacy agreement such as the details of the IPs and surrogate; the marital status of all parties at the time of conception; conception arrangements (including embryo creation, clinic or home insemination details, number of cycles and number of embryos to be transferred); pregnancy arrangements (including how much information the IPs will be provided with and how much involvement they will have with clinic/antenatal appointments and decisions); birth and post-birth arrangements (including arrangements for an application for a parental order); and the timing and amount of any reasonable expenses to be paid to the surrogate.2 1 Department of Health and Social Care, The surrogacy pathway: surrogacy and the legal process for intended parents and surrogates in England and Wales (updated 23 July 2021): available at bit.ly/2VNM3MN. 2 Ibid; see the section on ‘What to include in the agreement’.

438

Assisted Reproduction 11.44

Counselling and the welfare clause 11.43 The HFEA does not regulate surrogacy arrangements in the UK. However, as most surrogacy arrangements in this country probably involve treatments provided by a licensed fertility centre (IVF, artificial insemination and/or embryo transfer), the HFEA Code of Practice provides specific guidance to centres that offer, plan to offer, or advertise treatments involving surrogacy, regarding: (a) (b)

the welfare of the child assessment process in relation to surrogacy arrangements; and counselling and consent in surrogacy arrangements.

Paragraphs 8.9 to 8.11 of the Code of Practice1 require the centre to assess all of those in the intimate surrogacy relationship – the intended parent or parents, the surrogate and the surrogate’s partner (if she has one) – and stipulates that, in the welfare of the child assessment, the centre should: ●●

●●

●●

take into account the possibility of a breakdown in the surrogacy arrangement leading to the surrogate choosing to parent the child and/ or refusing to relinquish legal parenthood, and whether this is likely to cause a risk of significant harm or neglect to any child who may be born or to any existing children of the surrogate; use evidence gathered from the GP, surrogate and any other relevant sources to satisfy itself that the surrogate is suitable to act as a surrogate, taking into account all relevant factors – including but not limited to the surrogate’s age, medical and obstetric history, mental health and body mass index. ensure all of those in the intimate surrogacy relationship have accurately completed a welfare of the child form in conversation with the treating clinician at the centre: ‘Any omission, discrepancy or other concern which raises questions about the woman’s suitability for surrogacy, or which might impact on decisions relating to her treatment, should be investigated by the centre and discussed with the surrogate.’

1 HFEA, Code of Practice (9th edn, October 2021) pp 100–101, available at bit.ly/HFEA-Code9th.

11.44 Centres that offer, plan to offer, or advertise treatments involving surrogacy are required to have a standard operating procedure (‘SOP’) in place for managing treatments involving surrogacy. The Code of Practice states: ‘8.12 … All centre staff should demonstrate their understanding of their centre’s SOP for surrogacy and associated protocols before coming into contact with surrogacy patients. Whilst acknowledging that the decision to proceed with treatment involving a surrogate should be made on a case by case basis, the SOP must detail its processes and policies in relation to (but not limited to) the following aspects of a surrogacy arrangement: (a) legal parenthood in surrogacy (including legal parenthood for single intended parents) (b) surrogacy agreements (c) counselling requirements

439

11.44  Assisted Reproduction (d) confidentiality and arrangements for sharing information, in particular, between the intended parent(s) and the surrogate (e) assessment of the surrogate and the procedure for when a surrogate is deemed unsuitable for treatment (f) ensuring provisions are made for the surrogate to be seen alone by a healthcare professional (g) the handover of care of the surrogate once a viable pregnancy has been confirmed (h) the welfare of the child assessment process. ‘8.13 The SOP must include a written decision-making protocol setting out the range of factors that may be taken into account when assessing the surrogate’s suitability. The protocol should require the treating clinician to document the evidence that he or she relied on when reaching a decision as to the surrogate’s suitability or unsuitability and should detail how the decision should be communicated to the surrogate and the intended parent(s). The decision-making protocol should be used in every case of a proposed surrogacy arrangement and a record made of the decision making process and outcome for each individual intended surrogacy arrangement.’ 11.45 In addition to specific guidance on the welfare of the child assessment process, the 9th edition of the Code of Practice includes for the first time a whole chapter focusing on the steps that must be taken to ensure that informed consent is given by all of those involved in surrogacy arrangements. Chapter 14 sets out the need to ensure those involved in surrogacy arrangements have received full information about the legal and other implications of surrogacy, as well as counselling, for both the surrogate and the commissioning parents. Fertility clinics are specifically required to be alert to any sign of coercion and para 14.4 states that, ‘The centre’s role should be to protect both parties from entering into a surrogacy arrangement which it suspects may be unsuitable or unethical for any reason.’1 Paragraphs 14.4 and 14.6 require the centre to advise parents to seek legal advice about surrogacy, particularly surrogacy in another country, and para 14.7 to 14.14 provide guidance on the steps to be taken to ensure the surrogate and IPs have discussed the implications of treatment with a qualified counsellor with appropriate knowledge of surrogacy arrangements (both separately and in a joint session). Paragraphs 14.8 and 14.9 state as follows: ‘14.8 … The discussion of implications should address potential risks and implications of surrogacy, including, but not limited to: ●● ●● ●● ●●

risks to the surrogate’s physical and mental health; legal implications, practical and financial matters; the risk of the intended parent(s) not wanting to parent any child born and/or not wishing to make a parental order application after a child is born; the potential emotional impact on the surrogate and the surrogate’s partner and/or family …

‘The discussion of implications should allow full opportunity for the surrogate (and her partner, where applicable) to ask questions and discuss any concerns. ‘14.9 … The discussion of implications should address potential risks and implications of surrogacy, including, relevant risks outlined in 14.8, 440

Assisted Reproduction 11.47 as well as the risk of the surrogate not agreeing to the legal transfer of parenthood to the intended parent(s) after a child is born and the risk of the surrogate deciding to parent the child herself after its birth. The discussion of implications should allow full opportunity for the intended parent(s) to ask questions and discuss any concerns.’ The Code of Practice also emphasises the need to ensure that information about the effect of the legal parenthood provisions under the HFEA 2008 is provided, including information about parental orders.2 1 HFEA, Code of Practice (9th edn, October 2021) pp 147–150, available at bit.ly/HFEA-Code9th. 2 Ibid, paras 14.2–14.3.

Parental Orders 11.46 The HFEA 1990 and HFEA 2008 set out the legal definitions of parentage post-birth and provide the legal mechanism for transferring parental responsibility from the surrogate to the intended parents. The law confers legal parenthood for the child on the surrogate mother and her husband, wife or civil partner (unless he or she did not consent to the treatment), whether the treatment and surrogacy arrangement takes place in the UK or elsewhere. Intended parents must therefore apply to the court for a parental order in order to reassign legal parenthood to themselves and extinguish the legal status of the surrogate parents. As Theis J stated in J v G: ‘A parental order allows the reality for [the children] to be formalised now and bestows a sense of finality and completeness. It closes the door on official challenges to the intended parents’ authority and paves the way for the future without … further anxiety.’1 As set out in the HFEA 2008, a parental order provides for a child to be treated in law as the child of the applicant(s) if: ●●

●● 1

the child has been carried by a woman who is not the applicant, or one of the applicants, as a result of the placing in her of an embryo or sperm and eggs or her artificial insemination, whether in the UK or elsewhere (s 54(1)(a) and (10)); and the gametes of the applicant, or at least one of the applicants, were used to bring about the creation of the embryo (s 54(1)(b)). J v G (Parental Orders) [2013] EWHC 1432 (Fam) at para 28.

11.47 In addition, the conditions set out at s 54(2)–(8A) of the HFEA 2008 must be satisfied where there are two applicants, or s 54A(2)-(8) where the application is made by a sole applicant:1 ●● ●● ●●

the applicant(s) must be aged 18 or over (ss 54(5) and 54A(4)); where there are two applicants, they must be husband and wife, civil partners or two persons living as partners in an enduring family relationship (and not related to one another) (s 54(2)); the application must be made during the six month period after the child’s birth but not within the first six weeks of the child’s birth as the agreement of the legal mother will be ineffective (s 54(3) and (7); s 54A(2) and (6)); 441

11.47  Assisted Reproduction ●●

●● ●●

the court must be satisfied that the surrogate, and any other person who is a parent but not an applicant, has freely, and with full understanding of what is involved, agreed unconditionally to the making of the order (ss 54 (6) and 54A(5)); the child must be living with the intended parent(s) when the application and order is made and either one or both of the intended parents must be domiciled in the UK (ss 54(4) and 54A(3)); the court must be satisfied that no money or benefits have been exchanged by the applicants, other than for expenses reasonably incurred (ss 54(8) and 54A(7)).

1 In Re Z (A Child) (No 2) [2016] EWHC 1191 (Fam), [2016] 2 FLR 327, the President of the Family Division declared that s 54 of the HFEA 2008 was ‘incompatible with the rights of [the Applicant] under Article 14 ECHR taken in conjunction with Article 8 insofar as they prevent the Applicant from obtaining a parental order on the sole ground of his status as a single person as opposed to being part of a couple.’ To remedy this incompatibility the Government inserted s 54A into the HFEA 2008 by the Human Fertilisation and Embryology Act 2008 (Remedial) Order 2018 to allow applications for parental orders to be made by a single person.

11.48 When the court is considering an application for a parental order, the paramount consideration of the court is the child’s welfare throughout their life.1 As Lady Hale noted in Whittington Hospital NHS Trust v XX, the application of this central guiding principle creates a tension: ‘welfare considerations will almost always point towards making a parental order but this makes it difficult for the court to police even the requirements of sections 54 and 54A, let alone to enforce any public policy against commercial surrogacy arrangements which might be deduced from the Surrogacy Arrangements Act 1985.’2 This tension can be vividly seen in parental order applications coming before the courts in which payments made in foreign commercial surrogacy arrangements have been retrospectively authorised. In Re X and Y3 the court had to consider for the first time whether payments made to a surrogate in the Ukraine, which ‘significantly exceeded “expenses reasonably incurred”’, could be retrospectively authorised under s 30(7) of the HFEA 1990. Hedley J held that the court had to strike a balance between the public policy lying behind the legislative provision and the lifelong perspective of the children’s welfare, which required it to ask whether the sum paid was disproportionate to reasonable expenses, whether the applicants had acted in good faith and whether they were attempting to defraud the authorities. Adopting that approach, the court was satisfied that the payments should be authorised and that the welfare of the children would best be served by making the parental order sought.4 This decision effectively set the tone and parental orders have subsequently been made in a number of cases in which payments exceeding reasonable expenses have been made, including those where the applicants have entered into commercial surrogacy arrangements abroad. For example, in Re C (Parental Order)5 the court authorised the expenses paid to a surrogate and surrogacy agency in California, where it was clear that elements of the payments went beyond reasonable expenses and included compensation and profit. Theis J held that the applicants had acted in good faith, they had complied with the requirements of the authorities in both jurisdictions and the sums paid were not disproportionate to the reasonable expenses; they did not overbear the will of the surrogate and were not an affront to public policy; they 442

Assisted Reproduction 11.49 were payments permitted in the jurisdiction in which they were made and were not too dissimilar to payments made in similar cases. Theis J also held that the payments made for fertility treatment were not caught by s 54(8) as they would be permitted expenses if the procedure had been performed in the UK. 1

The Human Fertilisation and Embryology (Parental Orders) Regulations 2018 imports into ss 54 and 54A of the HFEA 2008 the provisions of s 1 of the Adoption and Children Act 2002. 2 [2020] UKSC 14, [2020] 2 WLR 972 at para 17. 3 [2008] EWHC 3030 (Fam), [2009] Fam 71 (Hedley J). This was the first international surrogacy agreement to come before the courts under s 30 of the HFEA 1990. 4 Ibid; at 24H, Hedley J expressed his unease regarding the tension created in these cases: ‘I feel bound to observe that I find this process of authorisation most uncomfortable. What the court is required to do is to balance two competing and potentially irreconcilably conflicting concepts. Parliament is clearly entitled to legislate against commercial surrogacy and is clearly entitled to expect that the courts should implement that policy consideration in its decisions. Yet it is also recognised that as the full rigour of that policy consideration will bear on one wholly unequipped to comprehend it let alone deal with its consequences (i.e. the child concerned) that rigour must be mitigated by the application of a consideration of that child’s welfare … If public policy is truly to be upheld, it would need to be enforced at a much earlier stage than the final hearing of a section 30 application.’ 5 [2013] EWHC 2408 (Fam), [2014] 1 FLR 757, per Theis J at paras 15 and 18.

11.49 The liberal interpretation of the requirements of ss 54 and 54A of the HFEA 2008 in order to promote the welfare of the child can also be seen in the approach of the courts to the six-month time limit within which applications are to be made and the requirement for the child to have their home with the applicant(s) at the time of making the application and the order. In In re X (A Child) (Parental Order: Time Limit),1 the President of the Family Division held that looking to the subject matter, the background, the purpose of the statutory requirement, the importance of the provision to the general object intended to be secured by the Act, and the actual or possible impact of non-compliance on the parties, the court was not prevented from making a parental order after the expiration of the six-month deadline. Furthermore, in determining that the child’s home was with both parents, the court held that the parental order criteria can and should be ‘read down’ to ensure that the child’s right to private and family life under Art 8 of the ECHR is protected in a manner that is ‘practical and effective’ rather than ‘theoretical and illusory’. Sir James Munby observed that: ‘Section 54 goes to the most fundamental aspects of status and, transcending even status, to the very identity of the child as a human being: who he is and who his parents are. It is central to his being, whether as an individual or as a member of his family … this case is fundamentally about X’s identity and his relationship with the commissioning parents. Fundamental as these matters must be to commissioning parents they are, if anything, even more fundamental to the child. A parental order has, to adopt Theis J’s powerful expression, a transformative effect, not just in its effect on the child’s legal relationships with the surrogate and commissioning parents but also, to adopt the guardian’s words in the present case, in relation to the practical and psychological realities of X’s identity. A parental order, like an adoption order, has an effect extending far beyond the merely legal. It has the most profound personal, emotional, psychological, social and, it may be in some cases, cultural and religious, consequences …’2 1 2

[2014] EWHC 3135 (Fam), [2015] Fam 186 (Sir James Munby P). Ibid, at para 54.

443

11.50  Assisted Reproduction 11.50 More recently in Re A (Surrogacy: s 54 Criteria)1 a parental order was made in favour of parents who were separated and living in separate homes at the time of the application, which was made more than two years after the six-month time limit prescribed by s 54(3). Following a detailed and comprehensive review of the relevant authorities, Keehan J identified the following principles to be applied when considering whether or not the statutory criteria are satisfied: ‘i)  when interpreting legislative provisions, the court must have regard to the underlying purpose of the requirement and ensure the interpretation does not go against the grain of the intentions of Parliament; ‘ii) s.3 of the [Human Rights Act 1998] requires the court, where possible, to give a Convention compliant interpretation of statutory provisions; ‘iii) a failure to adhere to the six-month time limit to make an application for a parental order is not fatal to the making of the order; ‘iv) the questions whether the applicants are in an enduring family relationship and whether the child has his home with the applicants are matters of fact for the court to determine; ‘v) where the court finds that the Article 8 and/or Article 14 rights of the child are engaged, the biological and social reality of the child’s life must prevail over legal presumption; ‘vi)  the existence of family life is not defined nor is its existence constrained by legal, societal or religious conventions; ‘vii) there are no minimum requirements that must be shown if family life is to be held to exist; ‘viii) what is required is an unambiguous intention to create and maintain family life, and secondly, a factual matrix consistent with that intention which is clearly a question of fact and degree; ‘ix) the mere fact that the parents are now separated is not fatal to the application for a parental order; ‘x) similarly, the mere fact that the parents live in separate homes is not fatal to the application; ‘xi) if a parental order is not made, the child is likely to be denied the social and emotional benefits of recognition of his relationship with his parents and would not have the legal reality that matches his day to day reality; ‘xii) the transformative effect of a parental order cannot be overstated; and ‘xiii) the ultimate test for the making of a parental order is the welfare best interests of the child.’2 1 2

[2020] EWHC 1426 (Fam) (Keehan J). Ibid, para 54.

11.51 The courts now frequently make parental orders in respect of children who are much older1 and where the child is not living with both applicants at the time of the application and making of the order.2 In addition, at the time of writing, the authors are not aware of any case in which a parental order has been refused on the basis that payments in excess of reasonable expenses have been made.3

444

Assisted Reproduction 11.51 Part 13 of the Family Procedure Rules 2010 (SI 2010/2955) sets out the procedure on an application for a parental order. In Re D (Practice: Declaration of Parentage),4 the President of the Family Division published standard forms of order to be used in straightforward and undisputed applications for declarations of parental status under the HFEA 2008 and gave guidance on the correct procedure to be used. The court held: ‘5. The fact that a claim has gone by concession or consent does not prevent the court from granting a declaration. And in an appropriate case, a declaration can be granted even though the case has proceeded to a conclusion without a full-blown trial and without the court hearing oral evidence. ‘6. But this does not mean that a declaration can be granted by consent or concession without more ado. As I said in re A (Legal Parenthood: Written Consents)5 … “It is elementary that a declaration cannot be granted by consent or by default. There must be a proper examination by the court of the relevant facts, assessed in the light of the applicable law, before a judge can be satisfied, as he must be if the relief sought is to be granted, that the claim for the declaration is indeed made out.” … ‘8 … ii) The child is not required to be joined as a respondent … though under FPR 16.2 the child may be joined if the court considers it is in the best interests of the child to be made a party to the proceedings. In practice, that no longer happens unless the application is for a declaration of non-parentage … or the case raises some novel point, the proper resolution of which requires the participation of the child or the assistance of a guardian. iii) Before the application is issued, the applicant has usually already obtained copies of the relevant files from the clinic … and is thus able to formulate his/her case with precision. iv) … it is appropriate, and settled practice, to require notification of the proceedings to (i) the clinic, (ii) the Human Fertilisation and Embryology Authority, (iii) the Attorney General and (iv) the Secretary of State for Health … This is to enable them, if they think it appropriate for whatever reason, to seek to intervene … In current practice, the latter three almost never do so, and the clinics not very often, but this process is, in my judgment, an important safeguard whose continuing utility is not to be assessed by the frequency (or, rather, infrequency) of intervention but by the salutary effect on litigants of knowing that, to put it colloquially, public authorities may indeed intervene if they have reason to suspect that something ‘fishy’ is, or may be, going on. v)  Initial directions, in the form of the standard directions order, are typically made on paper without the need for any directions hearing … – so the matter can proceed direct to a final hearing … ‘9. One of the points raised … is the suggestion that there may be cases where an oral final hearing can properly be dispensed with, the judge making the order on the papers. I would not rule out the possibility of proceeding in this way in an appropriate case. What such a case might be, and whether 445

11.51  Assisted Reproduction it would be appropriate to proceed in this way in a particular case, must, in the final analysis, be a matter for the judge. It is not something in relation to which it would be appropriate for me to offer any specific guidance.’ ‘10. All I can properly say is this i) I have difficulty seeing how it could ever be appropriate to dispense with an oral final hearing if the claim for relief is dependent on the parties’ evidence of what did or did not happen (for example, where parol evidence is relied on to prove the existence of a document which cannot be found). ii) The kind of case in which it might be appropriate to proceed without an oral final hearing is where (a) the application turns entirely on written documents from the clinic’s file, (b) the factual circumstances are the subject of a previous judgment which was precisely in point; (c) there is no dispute between the parties; (d) there has been no intervention by the Human Fertilisation and Embryology Authority, the Attorney General or the Secretary of State for Health, and (e) the applicant and respondent both wish to proceed without an oral hearing …. ‘12. First, and however straightforward the case might be, either the applicant or the respondent must be entitled to an oral final hearing if that is what they want, just as they must, as I have previously pointed out, be entitled to address the court, or give evidence (even if not strictly necessary to prove their case) if that is what they want …’ ‘13. Secondly, if desired to persuade the court to dispense with an oral final hearing, that must be clearly stated, with reasons set out, in the evidence or submissions filed in accordance with the standard directions order, para 12.’ ‘14. Thirdly, the evidence or submissions must (i) identify the relevant documents on which it is said the case turns, (ii) specify precisely the problem(s) which arise on the documents and (iii) identify precisely, with specific references, the authorities relied on in support of the contention that, despite the identified problem(s), the applicant is entitled to the declaration sought. This can all be done, and wherever possible should be done, shortly and succinctly …’ 1

See for example A v C [2016] EWFC 42, [2017] 2 FLR 101, where the children were aged 12 and 13. 2 In Re JB (A Child) (Surrogacy: Immigration) [2016] EWHC 760 (Fam), at paras 39-42 Pauffley J held that the concept of home ‘must and should be construed flexibly’ such that intended parents whose son remained in India with his paternal grandmother at the time of the application and the making of the order were capable of meeting the requirement set out in s 54(4)(a). 3 Paragraph 5.93 of the Law Commissions’ Consultation Paper, Building families through surrogacy: a new law (Law Com CP 244, 2019) (Scot Law Com DP 167, 2019). 4 [2017] EWHC 1782 (Fam), [2017] 4 WLR 12. 5 [2015] EWHC 2602 (Fam).

11.52 Although it is not common for a surrogate to change her mind and refuse to give the child to the intended parent or parents, a number of cases have come before the courts where this risk has materialised and the court was required to determine who the child should live with.1 As the court cannot make a parental order without the agreement of the surrogate and any other person who is the parent of the child, these cases have been dealt with under the framework of child arrangements orders. 446

Assisted Reproduction 11.53 In the unusual case of In re AB (Surrogacy: Consent)2 the intended parents of twins carried by a surrogate applied for parental orders in circumstances where the children had been in their care since the day following their birth. Despite the children having no contact with the surrogate and her husband and the fact they had clearly indicated that they wished to have no active involvement in the children’s lives, both the surrogate and her husband refused to agree to the order ‘due to feelings of injustice’. As 54(6) of the HFEA 2008, which required the consent of the surrogate and her husband, was not met the parental order application came to ‘a juddering halt’ and all that the court could do was make a child arrangements order. This gave the biological parents parental responsibility until the children reach the age of 18 but the surrogate and her husband remained the child’s legal parents for the rest of their lives. Theis J commented that an adoption order would be inappropriate as the parents would be asking to adopt their own children and the child’s lifelong welfare needs required a parental order to be made. It was noted that the Law Commission had recently announced that surrogacy may be included in their next programme of law reform and Theis J acceded to a request to adjourn the parental order application generally in the hope of a change of mind or a change in the law, as the President had done in In re Z. 1

2

Re N (A Child) [2007] EWCA Civ 1053; Re TT (Surrogacy) [2011] EWHC 33 (Fam), [2011] Fam Law 362; H v S (Surrogacy Agreement) [2015] EWFC 36; Re Z (Surrogacy Agreements: Child Arrangements Orders) [2016] EWFC 34, [2016] Fam Law 1100; Re H (Surrogacy Breakdown) [2017] EWCA Civ 1798. [2016] EWHC 2643 (Fam), [2017] 2 FLR 217.

Reform 11.53 It is widely accepted that the current law on surrogacy is in need of substantial reform. In Re H,1 the Court of Appeal observed that: ‘… surrogacy is a complex area, ethically and legally, and that there are no internationally agreed norms. The subject has now been taken up as part of the Law Commission’s current programme, and in parting from the case, we endorse the Judge’s observations: “This case is another example of the complex consequences that can arise from entering into this type of arrangement. Even though C was an experienced surrogate, this case demonstrates the risks involved when parties reach agreement to conceive a child which, if it goes wrong, can cause huge distress to all concerned. For all the adults involved, who all clearly love H, the one thing I know they will agree is that their dispute and this contested litigation has been a harrowing experience for them all. This case is another example of the consequences of not having a properly supported and regulated framework to underpin arrangements of this kind.”’2 In June 2019 the Law Commission of England and Wales and the Scottish Law Commission published a joint consultation paper, Building families through surrogacy: a new law,3 in which it was noted that: ‘The key aspects and principles of the current law on surrogacy … date from legislation passed nearly 30 years ago. The law on surrogacy is now overdue for re-examination in light of the societal and medical changes that have occurred during this intervening period.’4 447

11.53  Assisted Reproduction The paper sets out the significant problems with the current law regarding legal parentage for children born through surrogacy, the lack of sufficient regulation and monitoring of the surrogacy process and a lack of clarity surrounding payments. Provisional proposals for reform are made, which include the following:5 ●●

●● ●● ●● ●●

A new surrogacy pathway for domestic surrogacy arrangements which provides for a pre-conception assessment of the welfare of the child to be born, written surrogacy agreements to be drawn up and allows intended parents to become legal parents of the child from birth without the need for a parental order, where the surrogate does not object. Regulation of surrogacy arrangements: a regulator for surrogacy and the creation of regulated surrogacy organisations to oversee surrogacy agreements within the new pathway. Removal of the requirements for a genetic link between the intended parents and the child in cases of medical necessity.6 Creation of a register to allow those born of surrogacy arrangements to access information about their origins. Recognition of international surrogacy arrangements on a country-bycountry basis.

The consultation closed on 11 October 2019 and the Law Commissions have indicated that a final report with recommendations for reform of the law and a draft Bill will be produced in Autumn 2022. 1 [2017] EWCA Civ 1798. 2 Ibid, per McFarlane LJ at para 28. 3 The Law Commissions, Building families through surrogacy: a new law (Law Com CP 244, 2019) (Scot Law Com DP 167, 2019); available at bit.ly/2LhcEMk. A summary of the consultation paper can be found here: bit.ly/376hPqW. 4 Ibid, para 1.5. 5 Ibid, Chapter 7 at paras 7.75–7.90; Chapters 8–10, 12–15. 6 Ibid, para 9.15: ‘We note that the Court of Appeal approved the statement from the skeleton argument of the appellant in the recent case of Whittington: “Throughout the country there are thousands of children born into families who would be appalled at the thought that simply because they have only a genetic connection to one of their parents, they were somehow of lesser value within the family”’ (XX v Whittington Hospital NHS Trust [2018] EWCA Civ 2832, [2019] 3 WLR 107 at para 92).

K CONCLUSION 11.54 Reproduction and parenthood have always been significant milestones for individuals, couples and families. However, technological advances have created ever-shifting and ever more complex issues about who can become a parent, how that can occur, with whose gametes and in whose body. Consent provisions are the key safeguard to control how individuals permit their gametes or embryos to be used. However, human error can create novel and at times troubling problems for parents and prospective parents.1 The regulatory framework places considerable responsibility on clinics to ensure that they fulfil onerous requirements in relation to consent, record-keeping and supportive parenting. Given the ‘labyrinthine provisions’2 and the sensitivity of these issues, it is likely that the courts will continue to step in to assist with determinations as to the use of gametes, embryos and provision of parenthood, particularly where there are potentially competing and conflicting Art 8

448

Assisted Reproduction 11.54 considerations. In re A (Legal Parenthood: Written Consents) Munby P stated, when addressing repeated institutional errors in relation to legal parenthood: ‘The question of who, in law, is or are the parent(s) of a child born as a result of treatment carried out under this legislation … is, as a moment’s reflection will make obvious, a question of the most fundamental gravity and importance. What, after all, to any child, to any parent, never mind to future generations and indeed to society at large, can be more important, emotionally, psychologically, socially and legally, than the answer to the question: Who is my parent? Is this my child?’3 It is to be hoped that fertility clinics will follow Munby P’s exhortation about: ‘the imperative need for all clinics to comply, meticulously and all times, with the HFEA’s guidance and directions’.4 1 Templeton, Blundering clinics deny IVF children legal parents, The Sunday Times, 10 April 2016, available at bit.ly/372DX5s; and see para 11.26 above. 2 X v Y (St Bartholomew’s Hospital Centre for Reproductive Medicine intervening) [2015] EWFC 13, [2016] PTSR 1, para 2 (Theis J). 3 [2015] EWHC 2602 (Fam), [2016] 1 WLR 1325, para 3 (Munby P). 4 Ibid, para 110 (original emphasis).

For updating material and hyperlinks related to this chapter, see: www.serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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450

Chapter 12

Pregnancy and Childbirth

A B

C

D

Introduction 12.1 The legal background  12.2 Patient and foetal rights in obstetrics  12.2 The caesarean section cases  12.4 The mentally competent adult patient: Re S (adult: refusal of treatment) 12.5 A solution? Re MB 12.7 Re MB: Capacity  12.8 Re MB: Reasonable force  12.9 Re MB: Interests of the foetus  12.10 Re MB: Procedure  12.11 The solution imposed – St George’s Healthcare NHS Trust v S 12.12 The Court of Appeal and Court of Protection guidelines  12.13 Court of Appeal guidelines  12.13 Court of Appeal guidelines with the MCA in force  12.14 Court of Protection guidelines: NHS Trust 1 and NHS Trust 2 v FG 12.16 Court of Protection guidelines for obstetric cases: procedure and evidence 12.17 Notifying the patient  12.19 The timing of applications and delay  12.20 Planning in advance  12.21 Contingent declarations  12.22 Advance decisions  12.24 Management of pregnancy in women who are comatose or in a permanent vegetative state  12.25 Forcible transfer to hospital for delivery  12.26 A suggested procedure for obstetric units  12.27 Assessment of capacity  12.28 Advice to patients about nature of possible treatment  12.29 Discussion with patient about possible loss of capacity  12.30 Liaison between teams  12.31 Advance decisions  12.32 Psychiatric referral and assessment where capacity in doubt  12.33 Contingency planning for court application  12.34

451

12.1  Pregnancy and Childbirth

E F

Compliance with court guidelines  12.37 Continual advice to patient  12.38 Procedure for patients  12.39 Conclusion 12.40

A INTRODUCTION 12.1 Until 1988 no case appears to have been brought before the English courts in which an attempt was made to authorise the imposition of obstetric management on a woman without a lawful consent. The extension of the declaratory jurisdiction1 by the cases of T v T2 and Re F (Mental Patient: Sterilisation)3 to include issues of mental capacity and best interests – combined with a practical requirement for ‘sensitive’ cases to be referred to court – inevitably set the scene for obstetric cases to become the subject of applications. In a small number of cases decided before the Mental Capacity Act 2005 (‘MCA’) came into force, women were subjected to non-consensual surgical delivery. In most cases this occurred in the context of women who were, or were at least perceived to be, lacking in the mental capacity to decide whether or not to undergo such a procedure. In at least two cases, however, women who did not lack capacity were forced to have their babies surgically against their wishes.4 The cases concerning caesarean section provide a useful guide to many of the principles involved in the application of the declaratory jurisdiction to medical treatment decisions, and are therefore considered in some detail. 1 Part of which has been described as ‘one of the most remarkable developments of modern British administrative law’: Zamir & Woolf, The Declaratory Judgment (2nd edn, Sweet & Maxwell, 1993), p 8. 2 [1988] Fam 52. 3 [1990] 2 AC 1; see the judgments of Lord Brandon at 56–57 and 62–65; Lord Griffiths at 70–71; Lord Goff at 79–80, 83. 4 See Re S (Adult Refusal of Treatment) [1993] Fam 123 as discussed at para 12.5 below.

B  THE LEGAL BACKGROUND1 Patient and foetal rights in obstetrics 12.2 An obstetrician continually faces the dilemma caused by the perception of an ethical duty to both the mother and her foetus as separate entities. Guidelines previously published by the Royal College of Obstetricians and Gynaecologists (‘RCOG’) state that: ‘The aim of those who care for pregnant women must be to foster the greatest benefit to both the mother and foetus with the least risk to both. Obstetricians must recognise the dual claims of the mother and her foetus. The mother may have separate interests from her future child. Obstetricians must inform and advise the family, using their training and experience in the best interests of both parties.’2 The common law has not, in general, recognised this dual obligation. On several occasions the courts have refused to recognise the foetus as having any legal personality giving the court jurisdiction to intervene. Thus, a man 452

Pregnancy and Childbirth 12.3 may not apply for an injunction to restrain the abortion of a foetus of which he is the father.3 It has been made clear that in such a case the foetus has no rights: ‘The first question is whether this plaintiff has a right at all. The foetus cannot, in English law, in my view, have a right of its own at least until it is born and has a separate existence from its mother. That permeates the whole of the civil law of this country (except the criminal law, which is now irrelevant), and is, indeed, the basis of the decisions in those countries where law is founded on the common law … there can be no doubt, in my view, that in England and Wales the foetus has no right of action, no right at all, until birth.’4 An action cannot be brought on behalf of an unborn child to prevent an abortion: ‘The authorities, it seems to me, show that a child, after it has been born, and only then, in certain circumstances, based on he or she having a legal right, may be a party to an action brought with regard to such matters as the right to take on a will or intestacy, or for damages for injuries suffered before birth. In other words, the claim crystallises upon the birth, at which date, but not before, the child attains the status of a legal persona, and thereupon can then exercise that legal right.’5 There is no jurisdiction to make an unborn child a ward of court, even to protect it from damage likely to be caused by its mother.6 Although the earlier Royal College guidelines described the dual claims of the mother and foetus, they nevertheless recognised the overriding control of the mother: ‘For the duration of pregnancy, the woman is the only person who can directly control what is done to her foetus. The foetus is totally reliant on the mother so long as it remains in utero. The protection of the foetus stands on her performance of her moral obligations, not on any legal right of its own.’7 1

This section is drawn in part from an article by one of the authors published in the Catholic University of America’s Journal of Public Health Law. 2 See Royal College of Obstetricians and Gynaecologists (‘RCOG’), Law and Ethics in Relation to Court-Authorised Obstetric Intervention (2006), para 5.3: see bit.ly/RCOGEthics-No1. These guidelines from the RCOG Ethics Committee are no longer current and have not been updated by the RCOG. There is therefore currently no published guidance from the RCOG on this issue, but much of the discussion contained within the 2006 guidelines remains valid. RCOG Clinical Governance advice on consent in obstetrics issued in 2015 is however available here: see bit.ly/RCOG-Gov-6. 3 Paton v British Pregnancy Advisory Service [1979] QB 276; Paton v UK (1980) 3 EHRR 408. 4 Paton v British Pregnancy Advisory Service, ibid, at 279 per Sir George Baker P. 5 C v S [1988] QB 135 per Heilbron J at 140, citing Canadian authorities Medhurst v Medhurst 46 OR (2d) 263 (1984); and Dehler v Ottawa Civic Hospital 25 OR (2d) 748 (1979), 29 OR (2d) 677 (1980). See also the European Court of Human Rights’ neutral stance on whether the foetus has any rights under Art 2 in Vo v France (2005) 10 EHRR 12, discussed in Chapter 9: Abortion, para 9.26 n1. 6 Re F (In Utero) [1988] Fam 122. 7 RCOG guidelines (see n2), para 5.1.

12.3 This is not to say that acts and omissions before birth may not have consequences after birth. Thus the common law recognises that an action in negligence may be brought by a child, once born alive, in respect of injuries inflicted as a result of ante-natal acts or omissions.1 A charge of homicide will 453

12.3  Pregnancy and Childbirth follow an assault on a pregnant woman which causes the death of the child, if he or she is initially born alive: ‘Murder or manslaughter can be committed where unlawful injury is deliberately inflicted either to a child in utero or to a mother carrying a child in utero in the circumstances postulated in the question. The requisite intent to be proved in the case of murder is an intention to kill or cause really serious bodily injury to the mother, the foetus before birth being viewed as an integral part of the mother. Such intention is appropriately modified in the case of manslaughter … ‘The fact that the death of the child is caused solely in consequence of injury to the mother rather than as a consequence of injury to the foetus does not negative any liability for murder and manslaughter provided that the jury are satisfied that causation is proved.’2 A similarly ambivalent view is taken by the English legislature. On the one hand, the Abortion Act 1967 authorises terminations of pregnancy in a wide range of cases. On the other, the Infant Life (Preservation) Act 1929 prohibits the destruction of any child capable of being born alive.3 The Congenital Disabilities (Civil Liability) Act 1976 clarifies the common law position in relation to liability to the child born alive in respect of injuries in utero. Turning to the mother, the law has to resolve the ostensible conflict between the principle that a competent adult patient cannot be forced to submit to medical treatment, however well intentioned, and however necessary to preserve life or health,4 and the principle that treatment can be given to a patient incapable of consenting if it is in her best interests.5 As will be seen, the perceived imperative to save life, foetal and maternal, resulted initially in what were surprising developments in the definition of mental capacity and of patients’ best interests. 1 2 3

4 5

Burton v Islington Health Authority [1993] QB 204, CA. A-G’s Reference (No 3 of 1994) [1998] AC 245. This is subject to an exception under the Abortion Act 1967 in relation to a foetus of 24 weeks or more likely to be seriously handicapped on birth: Abortion Act 1967, s 1 (as amended by the Human Fertilisation and Embryology Act 1990); and see Chapter 9: Abortion, para 9.3. Sidaway v Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital [1985] AC 871. Re F (Mental Patient: Sterilisation) [1990] 2 AC 1.

The caesarean section cases 12.4 Although this chapter focuses on caesarean sections, as the 2006 Royal College guidelines stated: ‘The legal and ethical principles that apply to caesarean section also apply to other possible interventions, such as intrauterine transfusion, cervical cerclage or medication in pregnancy.’1 Prior to the MCA coming into force there had been very few cases in which the courts had been asked to consider a proposal to deliver a baby by caesarean section against the will of the mother. The limited number of cases which came before the courts shared certain key features. They arose in circumstances of considerable urgency: often the pregnant woman was not given notice of the 454

Pregnancy and Childbirth 12.6 application, nor did she have legal representation, and no formal evidence was filed and served. The cases highlighted competing interests of the foetus and the mother and the tension between considerations of capacity and best interests. These cases caused huge controversy accompanied, on occasion, with sensational publicity and commentary in legal, ethical and medical journals2 and, increasingly, online in the ‘blogosphere’.3 1

See Royal College of Obstetricians and Gynaecologists, Law and Ethics in Relation to CourtAuthorised Obstetric Intervention (2006), para 2. 2 See Dolan and Parker, Caesarean Section: A treatment for mental disorder? BMJ [1997] 314; 1183 www.bmj.com/content/314/7088/1183. 3 This remains the case: see for example the series of blogposts on A NHS Foundation Trust v An Expectant Mother [2021] EWCOP 33 on the Open Justice Court of Protection Project, for example, see bit.ly/Open-Justice-05-07-21.

The mentally competent adult patient: Re S (adult: refusal of treatment) 12.5 In Re S (Adult: Refusal of Treatment),1 the first case brought before the courts for a declaration that it would be lawful to perform a caesarean section delivery on a woman in labour, the court found it lawful to override her clearly expressed will, despite her being mentally competent, and to perform invasive surgery on her. Re S was the subject of considerable academic2 and feminist3 criticism. A competent adult’s refusal of invasive surgery had been overridden in part in the interests of her foetus but, the foetus having died, in favour of her interests as determined by others. This momentous step was taken without any representation on her behalf and with only the most rudimentary evidence. Following this case, the RCOG issued guidelines4 which concluded by suggesting a practice of respecting the competent mother’s wishes in these circumstances: ‘A doctor must respect the competent pregnant woman’s right to choose or refuse any particular recommended course of action whilst optimising care for both mother and fetus to the best of his or her ability. A doctor would not then be culpable if these endeavours were unsuccessful.’ Building on this, the 2006 guidelines expressly provided: ‘It is inappropriate to invoke judicial intervention to overrule an informed and competent woman’s refusal of a proposed medical treatment, even if it seems to others to be irrational.’5 1 [1993] Fam 123. Historically, the terminology of ‘competence’ was used but this is now superseded by the MCA terminology of ‘capacity’. 2 Note commentary by Professor Grubb at [1993] 1 Med L Rev 92. 3 (1992) 142 NLJ 1638. 4 A Consideration of the Law and Ethics in relation to Court-Authorised Obstetric Intervention (Royal College of Obstetricians and Gynaecologists, 1996). This has been repeated in the 2006 guidelines (referred to at para 12.2 above) at para 7 (summary). 5 See Royal College of Obstetricians and Gynaecologists, Law and Ethics in Relation to CourtAuthorised Obstetric Intervention (2006).

12.6 A series of cases followed Re S1 raising concerns and causing controversy.2 These cases were often decided in urgent circumstances, after 455

12.6  Pregnancy and Childbirth relatively rudimentary hearings where the woman had no notice of the application, was unrepresented and where there was no formal evidence. 1

Thameside and Glossop Acute Services NHS Trust v CH [1996] 1 FCR 753; Rochdale Healthcare NHS Trust v C [1997] 1 FCR 274; Norfolk & Norwich Healthcare NHS Trust v W [1996] 2 FLR 613; and Re L (An Adult: Non-consensual Treatment) [1997] 1 FCR 609. 2 Hewson, Women’s rights and legal wrongs (1996) 146 NLJ 1385. Professor Grubb argues that it is ‘incredible’ ((1996) 4 Med L Rev 194–198).

A solution? Re MB 12.7 The concerns raised by the early cases were to some extent resolved in Re MB.1 The case was heard in circumstances of considerable urgency: an application was made by telephone to a Family Division judge after 9pm at a hearing that lasted 30 minutes. Hollis J granted a declaration in the following terms: ‘It shall be lawful for 2 days from the date of this order, notwithstanding the inability of [the patient] to consent thereto: (i) for the [hospital’s] responsible doctors to carry out such treatment as may in their opinion be necessary for the purposes of the [patient’s] present labour, including, if necessary, caesarean section, including the insertion of needles for the purposes of intravenous infusions and anaesthesia; (ii) for reasonable force to be used in the course of such treatment; (iii) generally to furnish such treatment and nursing care as may be appropriate to ensure that the [patient] suffers the least distress and retains the greatest dignity.’2 The patient was represented by counsel who had had some opportunity to take instructions from her, if only by telephone. The Official Solicitor’s representative was present as amicus. No formal evidence was available and, as in previous cases, information gleaned by counsel for both parties by telephone was relayed to the judge. The case concerned a woman with a 33-week pregnancy with a footling breech presentation and an extreme needle phobia. If normal labour was allowed to proceed there was a considerable risk of harm to the foetus, but little danger to the mother herself. She did not oppose a caesarean section as such, but adamantly refused to allow the insertion of a needle for any purpose. In this case the anaesthetist was prepared to take the risks involved in the gas inhalation technique, but the patient continually changed her mind as to whether she would consent to this. Her consultant psychiatrist’s opinion was: ‘Away from the need to undergo the procedure, I had no doubt at all that she fully understood the need for a caesarean section and consented to it. However in the final phase she got into a panic and said she could not go on. If she were calmed down I thought she would consent to the procedure. At the moment of panic, however, her fear dominated all.’3 Hollis J found that she lacked the mental capacity to make treatment decisions and made the declaration set out above. An appeal was immediately launched against the decision and the Court of Appeal convened to hear it in open court at 11.00 pm. The hearing concluded at 1.00 am with the dismissal of the appeal. As this was the first occasion on which a case of this type had been 456

Pregnancy and Childbirth 12.9 before the Court of Appeal, judgment was reserved. This judgment remains core reading for anyone proposing to undertake a non-consensual operation or apply to the court in connection with one.4 Many of the problems seen above were addressed. In summary, the court addressed the following points. 1 2 3 4

Re MB (An Adult: Medical Treatment) [1997] EWCA Civ 3093, [1997] 2 FLR 426. Ibid, 432. Ibid, 431. In conjunction with the case of NHS Trust v FG [2014] EWCOP 30, [2015] 1 WLR 1984 in obstetric cases.

Re MB: Capacity 12.8 It was emphasised that every adult is presumed to have the capacity to make decisions about treatment unless and until that presumption is rebutted, and that a capacitous person is entitled to make a decision: ‘for religious reasons, other reasons, for rational or irrational reasons or for no reason at all … [to] choose not to have medical intervention, even though the consequences may be the death or serious handicap of the child she bears, or her own death. In that event the courts do not have the jurisdiction to declare medical intervention lawful and the question of her own best interests objectively considered does not arise’.1 The irrationality in which the competent patient was entitled to indulge was defined in very wide-ranging terms: ‘a decision so outrageous in its defiance of logic or of accepted moral standards that no sensible person who had applied his mind to the question to be decided could have arrived at it’.2 However, it was suggested that: ‘Although it might be thought that irrationality sits uneasily with competence to decide, panic, indecisiveness and irrationality in themselves do not as such amount to incompetence, but they may be symptoms or evidence of incompetence.’3 The court approved the then test for capacity,4 but added the gloss that temporary factors, such as confusion, shock, fatigue, pain or drugs, or panic induced by fear, might destroy or erode capacity. It was emphasised that careful examination of the evidence was required to determine whether fear had destroyed capacity as opposed to being a rational reason for refusal. Applying these principles to the facts, the court held that the patient had lost her capacity by reason of her needle phobia dominating her thinking. 1 Re MB (an adult: medical treatment) [1997] EWCA Civ 3093, [1997] 2 FLR 426 at para 30.2. 2 Ibid, para 30.3. 3 Ibid. 4 Re C test; now supplanted by the MCA; see Chapter 2: Consent & Capacity – Adults generally, and at para 2.22 for discussion of Temporary Incapacity.

Re MB: Reasonable force 12.9 The court affirmed the previous decisions on this point and held that reasonable force could be used where necessary in the best interests of the 457

12.9  Pregnancy and Childbirth patient. It was accepted that the issue may need to be examined in greater depth on a future occasion.1 1 For the detail of the current law on restraint and detention, see Chapter 5: Restraint and Deprivation of Liberty. Recent cases have declared restraint to be lawful as being in P’s best interests in some circumstances. See for example: Re CA (Natural Delivery or Caesarean Section) (2017) 154 BMLR 142; NHS Trust v JP [2019] 6 WLUK 495; United Lincolnshire Hospitals NHS Trust v CD [2019] EWCOP 24; A NHS Foundation Trust v An Expectant Mother [2021] EWCOP 33.

Re MB: Interests of the foetus 12.10 After a thorough consideration of statute and case law, including human rights cases and US authorities,1 it was held emphatically that there was no jurisdiction at common law to declare non-consensual medical intervention to be lawful to protect the interests of the unborn child: ‘The law is, in our judgment, clear that a competent woman who has the capacity to decide may, for religious reasons, other reasons, or no reasons at all, choose not to have medical intervention, even though … the consequence may be the death or serious handicap of the child she bears or her own death. She may refuse to consent to the anaesthesia injection in the full knowledge that her decision may significantly reduce the chance of her unborn child being born alive. The foetus up to the moment of birth does not have any separate interests capable of being taken into account when a court has to consider an application for a declaration in respect of a caesarean section operation.’2 Thus the court dealt a mortal blow to the validity of Re S as an authority and emphatically restored the primacy of the capacitous adult woman’s autonomy, while seeking to maintain a level of protection for those who are incapable of making a decision for themselves. 1

2

Re T (Adult: Refusal of Treatment) [1993] Fam 95; Paton v British Pregnancy Advisory Service Trustees [1979] QB 276; C v S [1989] QB 135; Burton v Islington Health Authority [1993] QB 204; A-G’s Reference (No 3 of 1994) [1998] AC 245, HL; Villar v Sir Walter Gilbey [1907] AC 139; Offences Against the Person Act 1861, s 58; Abortion Act 1967; Congenital Disabilities Act 1976; Bruggemann and Scheuten v Federal Republic of Germany (1978) 10 DR E Com HR 100; Paton v UK (1980) 3 EHRR 408; H v Norway (1992) 73 DR 155, E ComHR); Open Door and Dublin Well Woman v Ireland (1992) 15 EHRR 244; Jefferson v Griffin Spalding County Hospital Authority (1981) 274 SE 2d 457; Crouse Irving Memorial Hospital v Paddock 485 NYS 2d 443 (1985); Re Madyun 573 A 2d 1259 (1986); Re AC 533 A 2d 611 (1987); Re Baby Boy Doe 632 NE 2d 32 (1994). Re MB (An Adult: Medical Treatment) [1997] EWCA Civ 3093, [1997] 2 FLR 426 at para 60.

Re MB: Procedure 12.11 Procedural guidelines were offered in Re MB.1 While it was said that the court was unlikely to entertain an application for a declaration of this type unless capacity was in issue, it was suggested that ‘for the time being at least’ doctors ought to seek a ruling on the issue of capacity. It was made clear that it was highly desirable for this type of case to be brought as soon as a potential problem was identified rather than at the last, desperate, minute, and that the hearing should be inter partes, with the mother being

458

Pregnancy and Childbirth 12.12 represented in all cases if she wished to be. It was preferable for evidence on capacity to be given by a psychiatrist. 1 The procedural guidelines in Re MB (along with those discussed in St George’s Healthcare NHS Trust v S at para 12.13 below) should now be read in conjunction with the more recent guidelines for obstetric cases set out in NHS Trust v FG [2014] EWCOP 30, [2015] 1 WLR 1984.

The solution imposed – St George’s Healthcare NHS Trust v S 12.12 St George’s Healthcare NHS Trust v S1 brought together the most unfortunate features of the cases which preceded Re MB and resulted in firm guidelines being laid down by the Court of Appeal. These guidelines should now be read in conjunction with those set out in the case of FG.2 A young adult woman of full mental capacity, who was 36 weeks pregnant and who suffered from pre-eclampsia, rejected medical advice that she needed an induced delivery in the interests of the health of herself and her baby. She refused, insisting on a natural delivery. A social worker and two doctors approved her detention in hospital under s 2 of the Mental Health Act 1983 (‘MHA’) for assessment. A few hours later, an ex parte application was made to a Family Division judge sitting in chambers. No evidence was presented, but erroneous information was given to the court. The judge granted a declaration which purported to dispense with the patient’s consent to treatment. Later the same day she was subjected to delivery of her baby by caesarean section without her consent. No judicial consideration was given to the issue of the patient’s capacity. In combined actions for judicial review and damages the Court of Appeal held: ●● ●● ●●

●●

●●

1 2 3

An adult of full mental capacity cannot be ordered to undergo surgery or any form of medical treatment against his or her wishes. An unborn child is not a separate person from its mother and its need for medical assistance does not prevail over the mother’s right to refuse treatment. No person may be detained under the MHA unless the patient falls within the conditions prescribed by the Act: detention for the purpose of providing non-consensual obstetric treatment, as opposed to assessment or treatment of a mental disorder, does not come within the Act. A person detained under the MHA still possessing full mental capacity cannot have medical treatment imposed on them unless it is permitted by the Act. Treatment other than for the mental disorder for which the patient is detained can be administered only with the consent of the patient. A declaration made on an ex parte application which the defendant could not oppose and of which they knew nothing has no effect and, in particular, is no defence to an action by the patient for damages for trespass to the person, once set aside on appeal.3 [1999] Fam 26, [1998] 3 WLR 936, [1998] 3 All ER 673. NHS Trust v FG [2014] EWCOP 30, [2015] 1 WLR 1984, see para 12.16 below. Note the ability now under the MCA to seek interim orders and declarations: see Chapter 6: Going to Court, para 6.39.

459

12.13  Pregnancy and Childbirth

C  THE COURT OF APPEAL AND COURT OF PROTECTION GUIDELINES Court of Appeal Guidelines 12.13 The guidelines issued by the Court of Appeal in the St George’s Healthcare case1 were drawn up following consultation with the President of the Family Division and the Official Solicitor, and further submissions from the parties, who had themselves taken soundings from a wide range of professional bodies. Although principally aimed at obstetric cases, they apply to all instances of proposed invasive treatment of a patient lacking the capacity to consent to or refuse treatment. These guidelines should be read in light of the procedural framework outlined in Chapter 6 and in conjunction with the guidelines set out in FG2 discussed below. In summary, the court stated that: ●● ●● ●● ●● ●●

●●

●● ●● ●● ●●

●●

It is pointless making an application to the court if the patient has full mental capacity. Refusals should be recorded and authenticated in writing wherever possible. A patient lacking the relevant mental capacity should be treated and cared for according to the hospital authority’s judgment of the patient’s best interests. A competently made advance directive should be respected; if there is doubt about its validity, an application should be made to the court.3 Any problem about mental capacity to consent to treatment should be identified as soon as possible and assessed as a priority. While assessment by a general practitioner or other non-specialist might suffice, in serious or difficult cases it should ideally be performed by a consultant psychiatrist approved under the MHA. If, on assessment, there is a serious doubt about capacity, the patient’s capacity to manage their own property or affairs should also be considered,4 as this may indicate that they are also unable to conduct proceedings. If this is in doubt, legal advice should be sought and the Official Solicitor notified. The patient’s solicitors must be informed immediately of any intention to make an application for a declaration, and an opportunity given to take instructions and obtain legal aid. Potential witnesses for the health authority must be made aware of the guidance in Re MB, St George’s Healthcare NHS Trust v S, and any guidance issued by the Department of Health and the BMA.5 Any application for a declaration should be inter partes; any other form of proceeding will not bind the patient. Where the patient is capable of instructing a solicitor, the Official Solicitor can be called upon by the court to act as amicus curiae (rather than litigation friend), although it is more likely that the Official Solicitor would not participate.6 On any such application the court must be supplied with all accurate and relevant information, including the reasons for the treatment, any alternatives, and any ascertainable reason why the patient is refusing the treatment.

460

Pregnancy and Childbirth 12.14 ●● ●● ●●

The terms of the order must be recorded and approved by the judge before they are communicated to the health body. The patient must be informed of the precise terms. Applicants for emergency orders made without issuing and lodging the relevant documents have a duty to comply with proper procedure and pay the relevant court fees. There might be cases which are so urgent that it is impracticable to apply to the court at all: where delay might damage the patient’s health and rigid adherence to the guidelines may be inappropriate.

The practical problem for all practitioners and authorities left by this guidance was to know in what type of case it was desirable or obligatory to make an application to the court. Although the case was concerned with a caesarean section, as was Re MB, the guidance was deliberately designed to cover any form of surgical or invasive treatment. Re MB and the St George’s Healthcare case appeared to leave open the position that not every case ought to be referred to court, without clear guidance as to when an application should be made. Definitive assistance is now provided on this question by the guidelines set out in the Court of Protection in FG7 alongside the more general guidance on ‘Applications relating to Medical treatment’ issued by the Vice-President in 2020.8 1 [1998] 3 WLR 936 at 968, [1998] 3 All ER 673 at 702. 2 NHS Trust v FG [2014] EWCOP 30, [2015] 1 WLR 1984. 3 For an advance decision to be valid it is likely to need to be highly specific: see Guys and St Thomas NHS Foundation Trust v R [2020] EWCOP 4 at para 65, and see Chapter 2: Consent & Capacity – Adults at para 2.32–2.42. There is no process whereby a patient can make what is conventionally known as an advance directive specifying what treatment they wish to have; advance decisions under the MCA are limited to refusal of treatment. But see para 21.21 n2 below for research currently under way into a more formalised positive advance decision making process. 4 Both the MCA principles and case law indicate that what now falls to be considered is the patient’s capacity to conduct the specific proceedings which are being brought. see Chapter 2: Consent & Capacity – Adults at para 2.8. 5 Re MB Guidelines [1998] 3 WLR 936, [1998] 3 All ER 673; this must now also include the guidance in FG: see n3 above. 6 As occurred in Re SB (A Patient; Capacity to Consent to Termination) [2013] EWCOP 1417. 7 n2 above. For further discussion of when to go to court, see Chapter 6: Going to Court. 8 Applications relating to medical treatment: Guidance authorised by the Honourable Mr Justice Hayden, Vice President of the Court of Protection, 17 January 2020 see bit.ly/VP-GuideJan-20.

Court of Appeal Guidelines with the MCA in force 12.14 Following the coming into force of the MCA, three of the early cases in the Court of Protection1 highlighted the following points: ●● ●● ●●

The principles laid down in Re MB remain good law. The importance of health professionals bringing matters to court as early as possible. The importance of discussion with women for whom these issues may arise taking place in the earlier stages of pregnancy, and of making careful plans in advance of any temporary loss of capacity – whether by means of advance decisions or other means – to secure respect for individuals’ wishes in the event that their mental health does deteriorate during pregnancy or labour. 461

12.14  Pregnancy and Childbirth ●● ●● ●● ●● 1

The need, in assessing best interests, to undertake medical risk assessments based upon the circumstances of the particular case and the importance of treating P as an individual. The merit of a balance sheet analysis in the preparation of evidence on best interests. In urgent cases of this sort, the court will always give anxious consideration to whether matters are best served by granting an adjournment, even if only for a short period. The use of reasonable force and deprivation of liberty necessary to give effect to the proposals should be carefully considered. Re AA (Compulsorily Detained Patient: Elective Caesarean) [2012] EWHC 4378 (COP), [2014] 2 FLR 237; Great Western Hospitals NHS Foundation Trust [2014] EWHC 166 (Fam), [2014] 2 FLR 1206; Re DD [2015] 1 FLR 1430, [2014] EWCOP 11. (There are six different judgments in this latter case, of which this is the central one.)

12.15 The Re MB guidelines were endorsed and followed in the first reported case decided under the MCA. In Re AA, an Italian mother whilst in the UK had a caesarean section without her consent.1 There was extensive discussion of the case not only in the press2 and from legal commentators3 but also those involved in women’s rights and childbirth, as she subsequently had her baby removed from her by the local social services (who were not a party to the Court of Protection application).4 The facts of the case were initially inaccurately reported,5 increasing the level of outrage at the action taken by the authorities and the English courts. Following the subsequent publication of the judgment, together with a transcript of the hearing of 23 August 2012 and a note from the judge dated 4 December 2013, the facts of the case became clearer.6 AA was compulsorily detained under s 3 of the MHA and suffering from psychotic episodes and delusional beliefs. She had previously had two elective caesarean sections and was pregnant with her third child. The expected birth date was said to be imminent and there was a risk of uterine rupture if she had a natural delivery. Mostyn J, sitting in the Court of Protection, held that the case fell squarely within the guidelines in Re MB. In accordance with settled law, the interests of the baby were not the court’s concern and the decision was to be made within the terms of s 1(5) of the MCA. The judge held that although AA’s detention under the MHA did not inevitably mean that she lacked capacity, the evidence demonstrated that this was the case. The court decided that her best interests were to deliver her child by caesarean section, with the use of reasonable and proportionate restraint if required to achieve the operation. 1 [2012] EWHC 4378 (COP), [2014] 2 FLR 237. 2 Booker, Baby forcibly removed by caesarean and then taken into care, Telegraph, 30 November 2013: bit.ly/2auYocx; Hamilton, Forced C-section was “the stuff of nightmares”: Social Services condemned for forcibly removing unborn child from woman, Independent, 1 December 2013: ind.pn/2abCYF7; Taylor, MP queries “forced” caesarean section, Guardian, 1 December 2013: bit.ly/2a0WTEE. 3 Med L Rev 2015, 23(1), 135–143; “Forcible” Caesarean section authorised for Italian national present temporarily in England and Wales, Thirty Nine Essex Street, Mental Capacity Law Newsletter, Issue 40, December 2013; ‘A post which is about caesarean without consent’, Mental Health and Mental Capacity Law, 4 December 2013: http://bit.ly/29W3lfK; Wagner, Lessons learned from the “Forced C-section” case, UK Human Rights Blog, 3 December 2013: bit.ly/2acQPb6; Reed, Never let the facts get in the way of a good story eh?, Pink Tape, 2 December 2013: bit.ly/2abDfYy.

462

Pregnancy and Childbirth 12.16 4 Prochaska Views on the forced caesarean judgment, Birthrights, bit.ly/29Udet7: ‘if you were trying to convince somebody the Mental Capacity Act was progressive, empowering, personcentred, the caesarean judgment would not help you’. 5 See n2. For example, as the judge noted, this was not ‘an application … made by the local authority or social workers’. 6 [2014] 2 FLR 237, [2013] EWCOP 4378. The judge decided to authorise release of the judgement together with the verbatim transcript of the proceedings and the order made ‘so as to inform and clarify recent public comments about this case’.

Court of Protection Guidelines: NHS Trust 1 and NHS Trust 2 v FG 12.16 Some key residual areas of uncertainty in these difficult obstetric cases were resolved in the case of FG,1 which resulted in further guidance being given by the Court of Protection. FG was 24 years old and was in the late stages of her first pregnancy. She had been diagnosed with schizoaffective disorder and was detained at hospital under s 3 of the MHA. FG’s treating psychiatrists held the view that she lacked insight into her condition and thus did not believe that she required treatment for her illness. Since mid-April she had refused medication which had resulted in a further decline in her mental state. Her persecutory delusions included a belief that the mental health services were ‘murderers’ and would murder her and her unborn child. FG’s expected date of delivery was 28 May 2014 and the applications were heard on 20 and 22 May 2014. The matter came before the judge on 16 May, not as a medical treatment case under MCA, but because the local authority responsible for considering plans for FG’s baby made an application for an order under the inherent jurisdiction of the High Court for permission not to disclose their care plan for the unborn child to FG. The judge was concerned that no application had been made in respect of the delivery and directed the Acute and Mental Health Trusts caring for FG to attend as well. The court was satisfied that FG lacked capacity to litigate the proceedings and the Official Solicitor was appointed as her litigation friend. The proceedings were adjourned until 22 May in order for further evidence to be obtained from FG’s treating consultant psychiatrist and treating consultant obstetrician and gynaecologist. It was at this hearing that the trusts sought declarations in the Court of Protection permitting them to undertake various steps and measures in respect of FG’s labour. On considering that evidence, the judge was satisfied that FG lacked capacity to make decisions about her welfare and medical treatment and to litigate. It was FG’s preference to have a natural birth; FG’s obstetric team stated that caesarean section would be avoided unless obstetrically indicated. It was not known how she would react and behave during labour, but the deterioration in her mental health and her lack of cooperation did not augur well. There was specific evidence of the importance to FG of having a healthy baby. Because of her persecutory beliefs, any damage to the baby was likely to be interpreted by her as the intentional result of a plan against her, which would have embedded her persecutory beliefs and rendered them harder to treat. Any harm to the baby was also likely to lead to FG becoming depressed and feeling inadequate.

463

12.16  Pregnancy and Childbirth The judge found that FG was a fragile and vulnerable individual and was likely to react adversely to the stresses and pressures of childbirth. More significantly though, she was likely to consider the care, advice and interventions of her treating clinicians as part and parcel of her perceived conspiracy by them to murder her; although it might have been possible to persuade her to respond cooperatively during labour, there was a real risk that she would act impulsively and uncontrollably and harm herself or her baby, whether directly or indirectly. Detailed care plans were drawn up covering FG’s transfer to the labour ward (under MHA s 17), with alternative plans for delivery of the baby. The judge was satisfied that it was in FG’s best interests to make the orders sought by the Trusts in respect of her medical treatment.2 The orders permitted various steps to be taken including administering medications, anaesthesia, instrumental or operative delivery and physical or medical restraint and the deprivation of FG’s liberty to facilitate those measures. The judge stressed that these were permissive orders to be used by the Trusts only in extreme circumstances and as a last resort. 1 2

NHS Trust 1 and NHS Trust 2 v FG [2015] 1 WLR 1984. Ibid, para 17.

Court of Protection guidelines for obstetric cases: procedure and evidence 12.17 In FG, Keehan J issued guidelines for applications to the court in obstetric cases. These supplement the pre-MCA guidelines issued by the Court of Appeal1 and provide practical assistance and answers to some questions left open in Re MB and the St George’s Healthcare case.2 These guidelines address the categories of obstetric cases in which applications to the court should be made and the precise procedure to be followed in such cases, including the exact nature of the evidence to be filed and served in such an application. These are set out in full in the Appendix.3 The guidelines should be read in light of the procedural framework outlined in Chapter 6. In summary, the guidelines are that: ●●

●●

An application should be made if the case falls within one of four categories: (1) The interventions proposed probably amount to serious medical treatment within the meaning of Court of Protection Practice Direction 9E.4 (2) There is a real risk that P would be subject to more than transient restraint. (3) There is a serious dispute as to what obstetric care is in P’s best interests, whether as between the clinicians, or, more likely, between the clinicians and P and/or those whose views have to be taken into account under s 4(7) of the MCA. (4) There is a real risk that P would suffer a deprivation of her liberty which, absent a court order which had the effect of authorising it, would be unlawful. In relation to category 1, an application should be made where caesarean section is proposed, and either the merits of the proposal are finely balanced or it is likely to involve more than transient restraint. 464

Pregnancy and Childbirth 12.17 ●● ●● ●● ●● ●● ●●

It may remain appropriate to make an application to the court in cases which do not fall within one of the four categories. The early identification of an individual in respect of whom an application may be required is essential. The Acute and Mental Health Trusts5 should liaise to assess P’s capacity to make decisions in respect of her obstetric care and to plan how and when such care is to be delivered in her best interests. An application should be made to the court at the earliest opportunity; save in the case of a genuine medical emergency, an application, should be made no later than four weeks before the expected date of delivery. The Official Solicitor should be notified, and evidence disclosed in a timely manner. An urgent directions hearing should be sought two weeks prior to the final hearing and Trusts should liaise with the Clerk of the Rules.

The court also gave guidance on the evidence to be filed and served, which must include:6 ●●

●● ●●

●●

●●

●●

If P is to be transferred from a psychiatric hospital to an acute hospital for her obstetric care, a care plan from the Mental Health Trust for transfer to include: an assessment of the prospects of P not cooperating with the transfer; plans for restraint to facilitate the transfer and a clear description of what P’s status will be under the MHA during transfer and at the acute hospital. A care plan from the Acute Trust for P’s obstetric care to include: the obstetric interventions and care proposed and what anaesthesia is planned or may be required. A care plan from the Acute Trust relating to the issue of restraint at the acute hospital to include: an assessment of the prospects of P not complying with obstetric interventions and care and, in a stepwise and escalating fashion, a description of the measures and techniques to be used. A witness statement from P’s responsible clinician (usually a consultant psychiatrist) to include: an overview of P’s psychiatric history; focused assessment of P’s capacity to consent to obstetric treatment which is proposed; comparison of the impact upon P’s mental health of the proposed obstetric treatment and restraint, and any alternatives and assessment of what obstetric treatment is in P’s best interests from a psychiatric perspective. A witness statement from a consultant obstetrician to include: an overview of P’s obstetric history; explanation of what obstetric treatment and interventions are proposed; identification of alternative management strategies; comparison of the risks and benefits of the proposed obstetric treatment versus any alternatives and justification of why the plan proposed is in P’s best interests. Witness evidence (which may be contained within the witness statements of the consultant psychiatrist and obstetrician) which sets out: P’s past and present wishes and feelings and beliefs and values in relation to the pregnancy, obstetric care, the importance of minimising risk to her own health during pregnancy and delivery and the importance of maximising the prospects of safe delivery of the baby; an explanation of whether P knows of the application and if not sets out cogent reasons why she has not been and why she should not 465

12.17  Pregnancy and Childbirth be informed; identification of individuals whose views should be taken into account in accordance with s 4(7) of the MCA and the gist of their views on best interests and P’s own wishes and feelings and beliefs and values. 1 See para 12.13 above. 2 Ibid. 3 Appendix 6: Court of Protection Guidance: FG. 4 PD 9E is no longer in force but is replaced by guidance: Applications relating to medical treatment: Guidance authorised by the Honourable Mr Justice Hayden, Vice President of the Court of Protection, 17 January 2020: see bit.ly/VP-Guide-Jan-20. 5 The Acute Trust in the context of the guidance is the Trust responsible for P’s obstetric treatment, and the Mental Health Trust is the Trust responsible for P’s mental health treatment. 6 For the full list of matters to be included in the evidence see para 23 of the guidance.

12.18 It is important to recognise that it is not the position that an application must be made to the court in every case involving a caesarean section proposed for a woman who lacks capacity to consent. The 2020 guidance of the Vice-President regarding medical treatment applications should be considered before bringing any medical treatment case before the court. This emphasises that ‘the starting point for the making of medical treatment decisions in relation to those lacking decision-making capacity is s 5 MCA 2005’.1 This will provide a defence against liability for the clinical staff carrying out the procedure where they reasonably believe that the woman lacks capacity and that they are acting in her best interests. An uncomplicated planned caesarean section, where there is no dissent expressed nor resistance anticipated, will not necessitate an application. Applications should, however, be made in cases where either the woman’s capacity or best interests are in dispute or there are factors in her medical or obstetric history which mean that she faces a higher risk of complications. The decision still involves an assessment of the risks involved and potential consequences for the patient. Any dispute as to what obstetric care, other than in relation to surgical delivery, is in P’s best interests must usually be a serious one which must have real substance; for instance, a dispute based upon P’s religious beliefs would necessitate an application to court. Any decision compelling a mother who wishes to have a natural birth to undergo a caesarean section, involving as it does a very serious interference with her human rights, should always be brought to court, irrespective of whether the treatment could be provided pursuant to the provisions of s 5 of the MCA or s 63 of the MHA and irrespective of whether the dispute is considered to be a serious one of real substance or otherwise. Likewise, any case which is likely to involve more than transient restraint should be brought to court. If a Trust considers that P may need to be deprived of her liberty to facilitate her obstetric care, but is unable to deprive P of her liberty under Sch A1 (whether because there has not been time or because P is ineligible), the Trust must apply to the court for authorisation to do so. The court will then be able to exercise its powers under MCA s 16(2)(a) to authorise the deprivation of liberty. More rarely, where P is ineligible under MCA Sch 1A, the inherent jurisdiction of the High Court may be used to make such an order provided it complies with Art 5.2 1

Applications relating to medical treatment: Guidance authorised by the Honourable Mr Justice Hayden, Vice President of the Court of Protection, 17 January 2020 (see para 12.17 n4) at para 4: see bit.ly/VP-Guide-Jan-20.

466

Pregnancy and Childbirth 12.19 2

A NHS Trust v A [2014] 2 WLR 607, per Baker J at paras 89–96; Chapter 3: Deciding for Others – Adults at paras 3.42–3.44. The inherent jurisdiction is also the only route to the contingent authorisation of the deprivation of liberty of a patient who, at the time of the application and order, has capacity, such authorisation to take effect only on loss of capacity: see para 12.17 n4, para 12.22 below and Chapter 2: Consent & Capacity – Adults at para 2.23.

Notifying the patient 12.19 In FG1 the applicant Trusts specifically sought the court’s permission not to notify the patient that the court proceedings were taking place. Keehan J granted this part of the application, having heard psychiatric evidence of the likely adverse impact on FG should she know about the proceedings at this point.2 However, he considered such an order was: ‘extremely unusual. It is at the extremity of what is permissible under the European Convention. It is a very exceptional step …’3 Keehan J refused to make an order that FG should never be told of the proceedings, considering this neither appropriate nor proportionate.4 Instead, he directed that the matter be considered at a subsequent hearing when updating psychiatric evidence could be presented. At that hearing, having heard this further evidence, he directed that FG should be informed about the proceedings.5 In An NHS Trust v JP6 a proposed care plan was approved that would involve a degree of covert administration of medication and an element of deception of the pregnant learning disabled woman. Williams J stated that: ‘deception can be compliant with the individual’s Article 8 rights provided the best interests exercise has been carried out. It seems to me that if it is in JP’s best interests for deception or misrepresentation to take place then the court would be obliged to authorise that. The question of the level of deception would no doubt feed into the evaluation of whether the best interests of JP were met by the plan which involved that deception; the greater the deception the more it might potentially weigh against JP’s best interest and vice versa but as a matter of principle seems to me that deception cannot be a bar to authorisation of a procedure.’ In JP the deceit was justified in order to maximise the chances of delivering her baby successfully and healthily, which is what the patient ultimately desired. It is suggested that the notification of P is a matter which applicant Trusts should consider carefully when preparing an application of this nature. It should never be assumed that the patient should not be informed about the proceedings, nor that the court will permit such a step without cogent evidence that it is necessary. 1 NHS Trust 1 and NHS Trust 2 v FG [2015] 1 WLR 1984. 2 Ibid, paras 48 and 55–56. 3 Ibid, para 55. Note also that in Re AA (Compulsorily Detained Patient: Elective Caesarean) [2012] EWHC 4378 (COP), [2014] 2 FLR 237, the order stated that the terms of the order should not be disclosed to the patient until after the caesarean section had been completed. That order was made by agreement of the parties and without any argument being heard on the point. 4 Ibid, para 56. 5 Ibid, paras 63–66. 6 [2019] EWCOP 23.

467

12.20  Pregnancy and Childbirth

The timing of applications and delay 12.20 From Re MB onwards the guidance and dicta from the courts have repeatedly made clear that applications should be brought to court at the earliest opportunity. Yet applications in obstetric cases are still often made at the eleventh hour.1 In GSTT and SLAM v R2 the pregnant woman, who was a detained psychiatric patient, was at 39 weeks and 6 days gestation and ‘could have entered labour at any moment’ when the urgent application to the court was made. The Vice President, Hayden J, ‘deprecated the delay in bringing the application’ noting that ‘self-evidently the court was left in the entirely invidious position of having to determine applications which have an obviously draconian complexion to them, in circumstances which were far from ideal.’ The exasperation judges experience when faced with tardy applications was succinctly expressed by Lieven J in University Hospitals Dorset NHS Foundation Trust and Dorset Healthcare University NHS Foundation Trust v Miss K.3 On hearing a very urgent application to authorise a caesarean section, she commented that: ‘2 … there was a very strong risk, at least from last week, that Miss K would lose capacity to give consent for the treatment proposed. In those circumstances, it was incumbent upon the Trusts to have made this application significantly earlier than today. ‘3. I appreciate that these cases are very difficult, and that everyone is trying to act in good faith and in the patient’s best interests. I also appreciate that doctors and Trusts are unwilling to make these applications unless they really need to. However, as has been said in so many cases before it feels like a waste of breath, the burden of making an application at the eleventh hour ultimately falls upon the Court and the Official Solicitor. ‘4. On the facts of this case, the Official Solicitor was instructed today, making her task virtually impossible. No medical notes have been produced, which, for reasons I will explain later, puts me and the Official Solicitor in a difficult position. It was impossible for the Official Solicitor to take any sensible view of the case … It is wholly unacceptable that NHS Trusts routinely put the Official Solicitor in such an impossible situation where she cannot do the job she is instructed to do, and where her role effectively becomes a tick box exercise. This is a waste of resources and wholly unhelpful to P’s best interests. It is also unfair on the court, … who have to deal with applications at extreme urgency. ‘5. It is not good enough for NHS Trusts to routinely say they were acting in good faith when in truth that simply becomes an exercise in burdenshifting.’ Late applications place the court in a very difficult position. It will mean that there is little opportunity for the patient even to be told, let alone consulted, about the application in advance, and it can seriously undermine the ability of the Official Solicitor to take any steps to investigate, explore or challenge the medical evidence, and to consult with the pregnant woman or any members of her family to obtain her views. As a result, the court may be left with little or no evidence about the woman’s past wishes, feelings, beliefs and values from those who knew her best on the key questions of her views on childbirth, and 468

Pregnancy and Childbirth 12.21 on whether her best interests would be prospectively achieved through the safe delivery of a healthy baby. In an appropriate case, costs orders may be made against applicant Trusts which have failed to make an application in a timely way.4 1 The application in Re AA (Compulsorily Detained Patient: Elective Caesarean) [2012] EWHC 4378 (COP), [2014] 2 FLR 237, was made only the day before an elective caesarean section was scheduled. AA had apparently been detained by the NHS Trust for around five weeks. It should have been known that she was at an advanced stage of pregnancy, and – it may be presumed – that she had undergone previous caesarean sections, placing her at risk of uterine rupture. It also presumably should have been known that there were significant issues here surrounding her capacity to consent to treatment. 2 [2020] EWCOP 4 at para 16. 3 [2021] EWCOP 40. 4 See for example North Somerset Council v LW [2014] EWCOP 3, in which a Trust which had failed to undertake any proper planning for delivery and failed to make an application was directed to pay all of the Official Solicitor’s costs of the Court of Protection proceedings. The authors are also aware of costs applications being made by the Official Solicitor in cases where the delay is such that P’s participation in the proceedings has been impeded; these have been concluded by negotiated agreement.

Planning in advance 12.21 The courts have repeatedly highlighted the crucial importance of timely planning so that health professionals bring matters to court as early as possible. As Hayden J has emphasised the need for ‘careful planning and the avoidance of delay, where that is not purposeful, is intrinsic to every case in the Court of Protection, without exception,’ but is ‘particularly acute’ in obstetric cases.1 An additional but important point, relevant to most cases of this nature, is that discussion with women for whom these issues may arise should take place in the earlier stages of pregnancy, and careful plans in advance of any temporary loss of capacity should be made – whether by way of advance decisions to refuse treatment or agreed birth plans indicating capable consent to procedures – to secure respect for individual’s wishes in the event that their mental health does deteriorate during the course of their pregnancy or in labour.2 At the very least, any views the woman may have as to what she considers should happen in the event of a loss of capacity should be recorded. This is crucial, as these cases are some of the most likely in which a patient (1) may not be informed of the proceedings, and (2) will be likely to regain capacity thereafter after a short time, and therefore become acutely aware of any invasion of her autonomy. Unfortunately, however, in the experience of the authors, the discussion with the patient and the recording of her views is often overlooked, and in some cases does not take place at all, even where a risk of a loss of capacity has been specifically identified. It is of particular importance that clinicians treat the patient as an individual and adapt standard obstetric practices and procedures to address her wishes and feelings in the event of a loss of capacity. For example, where a loss of capacity is identified as a risk, particularly in the later stages of pregnancy, but where standard practice is to discuss and complete a birth plan (which would address views about natural versus surgical delivery and other interventions) only at 34 weeks, consideration should be given to discussion and completion of a birth plan much sooner in the pregnancy than 469

12.21  Pregnancy and Childbirth usual for that patient. Further detail of practical steps which can be taken in such situations is set out below.3 1

GSTT and SLAM v R [2020] EWCOP 4 at para 16. See also Guys and St Thomas’ NHS Foundation Trust v X [2019] EWCOP 35, where a woman who was 42 +3 weeks pregnant who challenged the doctors’ view that she lacked capacity to make decisions about her obstetric treatment joined the out of hours telephone hearing unrepresented in the early hours of the morning. Theis J emphasised (at para 6) that ‘every effort must be made to issue such applications during normal court hours. Hearing these cases out of hours should be limited to the cases where that is really necessary.’ 2 MCA s 4(4) provides that the decision-maker must, so far as reasonably practicable, permit and encourage the person to participate, or to improve her ability to participate, as fully as possible in any act done for her and any decision affecting her. See also the research project currently under way through Mental Health and Justice at https://mhj.org.uk/3-advancedirectives/. 3 See paras 12.27–12.38 below.

Contingent declarations 12.22 In a number of recent obstetric cases the court has made anticipatory declarations about the lawfulness of obstetric treatment in circumstances where it was thought that a capacitous woman was likely to lose capacity as her pregnancy approached term, and that an intervention would then be required, possibly using restraint, in the face of an incapacitous refusal. Such orders made against a currently capacitous person have rightly been called ‘draconian’,1 and as such require properly to be justified in law. Although, in 2019, two judges of the Court of Protection had made such contingent orders under the MCA or in the inherent jurisdiction of the High Court in the alternative, this had been without hearing full argument on the jurisdiction to make such declarations.2 In GSTT and SLAM v R the Vice-President, Hayden J, having heard extensive legal argument on behalf of the NHS Trusts and the Official Solicitor, considered the court’s jurisdictional basis for such an order. The background to the case was that the patient had capacity to make decisions as to her antenatal and obstetric care, but there was a substantial risk of a deterioration in her mental health, such that she would be likely to lose capacity during labour. There was a risk to her physical health, in that she might require an urgent Caesarean section for the safe delivery of her baby and resist. Hayden J held that the wording of s 16(1) of the MCA (‘This section applies if a person (“P”) lacks capacity in relation to a matter …’) ‘specifically and unambiguously curtailed the ambit of the section, limiting its reach to those who lack capacity.’3 A similar conclusion had been arrived at in United Lincolnshire Hospitals NHS Trust v CD by Francis J, who observed that he was ‘not currently empowered to make an order pursuant to section 16(2) because the principle enunciated in section 16(1), namely incapacity, is not yet made out.’4 In contrast, the power under s 15 of the MCA to make declarations of lawfulness is not expressly curtailed by any requirement of incapacity; s 15(1) enables the court to determine whether an individual has or lacks capacity and the lawfulness of any act done or ‘yet to be done’. In GSTT and SLAM v R, Hayden J held that this allowed the court’s declaratory relief to be used in respect of those whom had not yet been found to lack capacity. 470

Pregnancy and Childbirth 12.24 Hayden J was clear that the power to make declarations of lawfulness under MCA s 15(1)(c) did not extend to the authorisation of deprivation of liberty. The MCA limits the circumstances under which it can be used for these purposes.5 However, citing the decision of An NHS Trust v Dr A,6 Hayden J held that it would be lawful to use the inherent jurisdiction to authorise a deprivation of liberty in such circumstances to avoid a lacuna.7 1 2

GSTT and SLAM v R [2020] EWCOP 4 at para 16. United Lincolnshire Hospitals NHS Trust v CD [2019] EWCOP 24, Francis J and Wakefield MDC & Wakefield CCG v DN & MN [2019] EWHC 2306 (Fam), Cobb J. 3 GSTT and SLAM v R, n1 above, at para 28. 4 United Lincolnshire Hospitals NHS Trust v CD, n2 above, at para 16(iii). 5 These being: (i) s16(2) (a): s4A(3) and (4); (ii) by standard urgent authorisation under Sch A 1; (iii) s 4A(5); or (iv) by operation of s 4B; while a decision is sought from the court, if the deprivation of liberty is necessary to provide P with life sustaining treatment or to do any vital act. 6 [2013] EWHC 2422 (COP). 7 See Chapter 5: Restraint and Deprivation of Liberty.

12.23 Francis J in CD1 had emphasised the ‘exceptional’ nature of such anticipatory declarations: the need for speedy action to implement potentially life preserving treatment precluded delaying the decision until capacity had actually been lost. Hayden J, in making the order sought by the Trusts in GSTT and SLAM v R, declined to characterise the exercise of the jurisdiction as exceptional, saying many cases in the Court of Protection might fit that description and so ‘the concept of “exceptional” was vulnerable to being corroded and interpreted as having wider application than that which the Court might intend’. Rather, said the Vice President, the jurisdiction was ‘highly case or fact specific.’2 Hayden J went on to point out that he did not think that he had previously delivered a judgment relating to serious medical intervention in which he had decided the issue contrary to the identifiable wishes and feelings of P, and that: ‘Caesarean sections however, present particular challenges even weighed against all these parlous circumstances. The inviolability of a woman’s body is a facet of her fundamental freedom but so too is her right to take decisions relating to her unborn child based on access, at all stages, to the complete range of options available to her. Loss of capacity in the process of labour may crucially inhibit a woman’s entitlement to make choices. At this stage the Court is required to step in to protect her, recognising that this will always require a complex, delicate and sensitive evaluation of a range of her competing rights and interests. The outcome will always depend on the particular circumstances of the individual case.’3 1 2 3

[2019] EWCOP 24. [2020] EWCOP 4 at para 48. Ibid, paras 66–67.

Advance decisions 12.24 The situation might arise where a competent woman (over 18) has made an advance decision detailing what treatments or procedures she does not agree to accept in the event that she loses capacity during pregnancy. Under s 26 of the MCA, where an individual lacking capacity at the time of the proposed treatment has made a written advance decision to refuse a particular 471

12.24  Pregnancy and Childbirth treatment at a time when she had capacity, the decision stands as if it were being made at the relevant time.1 The court has the power to make declarations as to the validity of an advance decision. As the RCOG Guidelines2 advise, practitioners are generally under a duty to respect the refusal of consent to any procedure set out in an advance decision.3 The 2006 RCOG Guidelines acknowledge that: ‘The mother’s wishes should be respected in the same way as if she were conscious and competent. This may be at the expense of the fetus.’4 This position was recently confirmed by Hayden J in the obstetric context in GSTT and SLAM v R, when he stated that ‘an Advance Decision, properly constructed, with the appropriate safeguards in place would, in my judgement, be binding on the Court.’5 Under the provisions of ss 24–26 the MCA it is only an advance refusal of treatment that has a binding force. There is no statutory procedure for giving advance consent to a treatment or procedure. A difficult issue, not yet considered by the courts, is whether a patient’s consent given in advance will be sufficient to make lawful a caesarean section carried out on a woman against her incapacitous expressed wishes at the time. Under common law, such advance consent is sufficient authority to act when any capacitous patient agrees to a procedure under general anaesthetic (during which they will of course be, temporarily, incapable), but in those circumstances no objection or change of mind follows the giving of that consent. At the very least, such consent given in advance of losing capacity could be taken as cogent evidence of the woman’s wishes and feelings in the circumstances. For example, an agreed birth plan or ‘hospital consent form’ may record that in the event of a loss of capacity the patient would wish to have a natural delivery unless and until either she or the foetus were at serious risk of death.6 In R (Burke) v GMC the Court of Appeal held that: ‘While section 26 … requires compliance with a valid advance decision to refuse treatment, section 4 does no more than require this to be taken into consideration when considering what is in the best interests of a patient.’7 Similarly, where the mother who lacks capacity at the time of the proposed treatment has indicated, when she did have capacity, that she did not want the treatment, albeit without making a valid advance decision to refuse treatment, s 4 of the MCA applies. In those circumstances, the woman’s previous views against the imposition of treatment would be an important factor in assessing her best interests. 1 See Chapter 2: Consent & Capacity – Adults at paras 2.32–2.42. 2 (2006). See para 12.3, n4. 3 Ibid, para 4.1. 4 Ibid, para 4.2. 5 [2020] EWCOP 4 at para 65. 6 However, doctors are reminded that they are not obliged to honour a request for specific treatment to be given that they would hold to be contrary to professional judgment or personal conscience. 7 [2005] EWCA Civ 1003 at para 57. See para 21.21 n2 above for research currently under way into a more formalised positive advance decision making process.

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Pregnancy and Childbirth 12.25

Management of pregnancy in women who are comatose or in a permanent vegetative state 12.25 Save where she has prepared an advance decision of sufficient particularity, health care professionals and the courts face a complex decision where a mother enters a coma but her pregnancy remains intact. A woman in this condition will lack capacity. In the absence of a formal advance decision or other expressions of her wishes, treatment decisions will be based on the assessment of best interests. It could be argued that where a woman is brain stem dead, with no prospects of recovery, her foetus, which could enjoy a full life, has a greater (or at least equal) claim to rights and interests. This seemed to be the approach taken in the 2006 Royal College Guidelines, as it was stated that where the mother is brain stem dead: ‘the interests of the fetus would predominate. It would, thus, be appropriate to defer any decision to withdraw life support until intact independent survival was likely.’1 However, this would run contrary to the long line of authority that the foetus has no independent legal status,2 and it is doubtful whether this statement reflects the true legal position. In many cases, the fact that the pregnancy has been wanted and welcomed may allow the court to infer that the mother’s overriding wish would be for her child to survive, so that taking steps to save the foetus may elide with the best interests of the mother. As Hayden J put it in GSTT and SLAM v R: ‘it will rarely be the case, in my judgement, that P’s best interests will be promoted by permitting the death of, or brain injury to, an otherwise viable and healthy foetus.’3 However, in those rare cases where the interests of the foetus may be in opposition to those of the mother, the mother’s interests are not usurped. The assessment of best interests should be limited to those of the mother and a number of different considerations pertain.4 First, what are the mother’s prospects of recovery? If she is likely to recover, it will more easily be said that an invasive procedure will be in the mother’s best interests. She will, eventually, gain the pleasure of having a child and avoid the trauma of knowing that her pregnancy failed. Secondly, will the continuance of pregnancy to the point at which a viable baby can be born or an invasive procedure to achieve that birth be detrimental to the woman’s short-term health or long-term prospects of recovery? If the pregnancy is not yet at a viable stage, will a decision to withhold or withdraw life-sustaining treatment, its continuation not being in the mother’s best interests, have to be postponed until a caesarean section is possible?5 1 See RCOG, Law and Ethics in Relation to Court-Authorised Obstetric Intervention (2006), para 4.4. 2 See para 12.2 above. 3 [2020] EWCOP 4 at para 63. 4 It should also be noted that the RCOG Guidelines (see n1) advise practitioners that where there is no valid advance decision relevant to the situation, the obstetrician ‘being uncertain of the intentions of the mother, would be free to allow more weight to the interest of the fetus’ (at para 4.3).

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12.25  Pregnancy and Childbirth 5 There are known to be cases where women have been kept alive in order to maintain a pregnancy. These raise difficult medical ethical questions for both clinicians and lawyers. See, for example, the case of Chastity Cooper, who was in a vegetative state for almost the whole of her pregnancy and for her vaginal delivery (BBC News, 28 July 2001). In contrast to this is the case of Marlise Munoz, who was kept on life support after a catastrophic car accident in response to a Texas law requiring life-sustaining measures to be maintained to preserve the life of a foetus even where an advance decision has been made to the contrary. She was ultimately removed from life support after her husband brought an action to have life support withdrawn in accordance with her previously expressed wishes, which was granted on the basis that the law did not apply as she was legally dead: see The Independent, 26 January 2014.

Forcible transfer to hospital for delivery 12.26 Two recent cases have considered the transfer to hospital of pregnant women who, although each retained capacity to make decisions about the management of their pregnancy and mode of delivery of their child, suffered with acute agoraphobia and so did not have capacity to decide whether to be transferred to the hospital when or if complications arose during her (preferred) home birth.1 In each case a declaration was made that a transfer to hospital where a planned delivery could take place was in the woman’s best interests. The consequential deprivation of liberty was also authorised by the court. In East Lancashire Hospitals NHS Trust v GH, the woman had been in obstructed labour for 72 hours at home when the urgent court application was made. MacDonald J applied the standard principles under the MCA ss 1–4 in coming to his determination that transfer was in her best interests. The judge gave significant weight to the fact that when GH had capacity, before this was overborne by her agoraphobia and anxiety, she had indicated that whilst she preferred a home birth, she would agree to admission to hospital if that were required. The judge also included in the best interests balance the fact that GH was clearly looking forward to the birth of the child and wished for the birth to go smoothly and safely. In respect of the restraint required to achieve transfer, the Official Solicitor argued in A NHS Foundation Trust v An Expectant Mother that, short of an actual emergency, it was not proportionate to use force or restraint for a preplanned admission, however desirable such an admission might otherwise be. The judge did not agree. Although Holman J accepted that it was an ‘unattractive scenario’ and ‘a severe infringement of the mother’s personal autonomy and liberty’ to bring her into hospital by force when she was not in labour, he considered that the small risk that some acute emergency might arise in the home from which the mother or baby could not be rescued was potentially more grave; importantly, this was a risk that the mother was ‘very, very clear’ she did not want to happen.2 1 2

East Lancashire Hospitals NHS Trust v GH [2021] EWCOP 18; A NHS Foundation Trust v An Expectant Mother [2021] EWCOP 33. A helpful example of a restraint and transfer care plan is appended to the judgment along with the final order. See para 12.4 n3 above for some of the blogosphere reaction to this judgment.

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Pregnancy and Childbirth 12.30

D  A SUGGESTED PROCEDURE FOR OBSTETRIC UNITS 12.27 While it is impossible to legislate for all circumstances, it would be prudent for all obstetric units to develop a practice for detecting and dealing with cases where a problem of capacity may arise. A simple and properly applied practice is likely to alleviate many of the problems which are illustrated in the cases described above, including the stress on and distress to patients and their families, unnecessary prejudice to the health of mothers and their babies, and exposure of doctors and others to litigation. Some hospitals have perinatal psychiatrists and specialised mental health midwives; greater use of these, with appropriate training, will enable pregnant women with mental health problems to receive better care with less likelihood of the manner of their delivery ever needing to be referred to court.

Assessment of capacity 12.28 On first referral or admission of any pregnant woman where capacity is in doubt, the responsible consultant should ensure that an assessment is made of the patient’s capacity to make decisions on obstetric issues. All examiners should be aware of the test for capacity set out in the MCA.1 1 See Chapter 2: Consent & Capacity – Adults.

Advice to patients about nature of possible treatment 12.29 In the light of the experience of the courts, it would be prudent to ensure that a patient is made aware as soon as is practicable of any possible need to administer injections or intravenous fluids, or to insert needles for other purposes to establish whether she suffers from any form of needle phobia.

Discussion with patient about possible loss of capacity 12.30 Consideration should be given at the outset and on a regular basis to the possibility of a transient loss of capacity occurring in the future due to mental health issues, a phobia, pain, or panic. Clinicians and antenatal carers should bear in mind that many pregnant women are reluctant to take medication during pregnancy due to fears that it will harm the foetus, and that many last-minute applications arise where the woman has stopped taking her usual psychotropic medication and has developed psychiatric symptoms as a result. Where such a risk is identified, this should be discussed with the patient well before the event arises, in order to agree with her, while she retains capacity, what should be done in that eventuality. Such a discussion should include her views, wishes and feelings on natural delivery, interventions, and surgical delivery, and the circumstances (if any) in which a caesarean section would be considered as an option, such as where her life or the life of the foetus were at risk. The discussion and outcome should be clearly and carefully recorded. In general in these types of cases, consideration should be given to the completion

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12.30  Pregnancy and Childbirth of a full birth plan by the patient at an early stage in the pregnancy, even if this is not standard practice.1 1 See para 21.21 n2 above for research currently under way into a more formalised positive advance decision making process which it is hoped will provide a template Advance Decision Making plan for perinatal period; and see bit.ly/Decision-Template-Review.

Liaison between teams 12.31 Where the woman is already under the care of psychiatric services, there should be regular liaison between psychiatric and obstetric teams to consider any risks as the pregnancy progresses.

Advance decisions 12.32 The patient should be asked whether she has an existing advance decision to refuse treatment that is relevant to her pregnancy and childbirth in place. If not, and where the woman has a history suggestive of possible temporary loss of capacity, coupled with fixed views about what procedures she will not accept, there should be discussion of an advance decision in writing, refusing any specific interventions to which she does not consent, while she retains capacity.1 However, making an advance decision about the mode of delivery of one’s child is not something to be entered into lightly. As Hayden J pointed out in GSTT and SLAM v R: ‘In preparing and drafting a carefully worded Advanced Decision, which is compliant with the statutory safeguards, P will, of necessity, have been required to identify the clear circumstances in which the refusal to comply is made. Neither, in my view, is the requirement for a signature in the presence of a witness to be regarded as a mere legal formality. It is part of a process in which a competent and capacitous adult can safely be regarded as having made prospective instructions on issues of the utmost gravity … unequivocally, the capacitous adult who has prepared a statutory compliant Advanced Decision, has consciously waived the right to change her mind upon loss of capacity.’2 1 See para 12.24 above. 2 [2020] EWCOP 4 at para 65.

Psychiatric referral and assessment where capacity in doubt 12.33 If she is not already under psychiatric care, and if, at any time, a real doubt emerges about the patient’s decision making ability, the woman should be referred to a consultant psychiatrist for an opinion on her capacity. The authors have experience of difficulties arising where it is unclear who is best placed to make capacity decisions in relation to decisions regarding obstetric care and treatment, the psychiatrist or obstetrician providing the care and treatment. In this situation, advice should be sought as soon as possible. There should also be ongoing liaison between the teams and consideration of 476

Pregnancy and Childbirth 12.38 detailed advance birth planning, with accurate recording of the patient’s wishes in respect of the various potential eventualities around labour and delivery.1 1 See para 12.30 n1 above.

Contingency planning for court application 12.34 If it is established that the patient lacks or is likely to lack the relevant capacity, is likely to refuse invasive treatment required for the health of herself or her baby, and there is a reasonable possibility of such treatment being required, legal advice should be sought at the earliest opportunity. This should enable a decision as to whether a court application should be made and, if so, when and in what circumstances that ought to be done. 12.35 Consideration will need to be given at the earliest stage of preparing an application as to whether the patient should be informed of the proceedings. The expectation is that women will generally be informed, save where there are truly exceptional circumstances where there is evidence that to do so may be actively damaging to the patient.1 It will usually be appropriate to consult the patient’s partner and other family members. In an exceptional case, the court may make an order that neither the woman nor any member of her family should be informed of the plans for delivery, or the application to the court, because of the extreme risks involved; it is emphasised that this will be even more unusual than non-disclosure to the woman alone, and will require detailed evidence to justify it.2 1 As in Re FG [2014] EWCOP 30. See para 12.19 above. 2 See North Somerset Council v LW [2014] EWHC 1670 (Fam).

12.36 Where an application is made, it will assist the applicants for the Official Solicitor to be contacted and consulted at the earliest opportunity. It is usual practice for the Official Solicitor to ensure that a representative meets with the patient (save in the exceptional case where an application is to be made for permission not to inform her about the proceedings) and any family members, to obtain her and their views as to her wishes and feelings and what they consider to be in her best interests. If the application is left until the last minute, so that the Official Solicitor does not have time to make these enquiries, the applicant will be expected to provide such evidence or the application may be adjourned.

Compliance with court guidelines 12.37 If an application is to be made, the Court of Appeal’s guidance must be followed as applied in the context of the Court of Protection1 in conjunction with the guidance set out in FG on obstetric cases.2 1 See Chapter 6: Going to Court. 2 [2014] EWCOP 30.

Continual advice to patient 12.38 At all stages the patient should be advised of what is being done (subject to what is said above) and of her rights to obtain her own advice and 477

12.38  Pregnancy and Childbirth representation. To this end, hospital authorities and their legal advisers should be in a position to assist patients to contact a lawyer when this is required. Family members may also wish to consult a lawyer.

E  PROCEDURE FOR PATIENTS 12.39 It is for those providing care to the patient to make the application.1 The following situation should never arise, but should a patient fear that doctors are likely to try to impose an unwanted surgical delivery on her, she has the right to seek an injunction restraining them from doing so. If she retains the capacity to make her own decisions, or has made her wishes clear when in possession of her full capacity, or such an operation is not in her best interests, the court is likely to grant an injunction or a declaration that the proposed treatment would be unlawful. The evidence on which those seeking to impose treatment rely should be obtained at the earliest opportunity. A request by a solicitor on behalf of the patient for disclosure of such information should be acceded to by any reasonable hospital authority.2 For the best prospect of mounting a successful application, those advising the patient should seek evidence on the following matters: ●●

●● ●● ●● ●●

the woman’s mental capacity to make decisions for herself – generally this will have to be given by a psychiatrist. In theory the patient could rely on the presumption of capacity, but it is likely that the hospital authority will adduce some evidence of incapacity which will require rebuttal; any evidence of previously declared wishes in relation to the mode of delivery; the intentions of the attending hospital staff; the patient’s reasons for refusing the proposed mode of delivery; and any reasons why it is not in her interests to undergo the proposed mode of delivery (generally this should be supported by independent medical opinion).

Usually, time will be short and the court must be notified immediately of the need for an urgent hearing. 1 See Chapter 6: Going to Court. 2 The procedure is set out in Chapter 6: Going to Court.

F CONCLUSION 12.40 The principles underpinning the assessment of capacity during pregnancy and childbirth are now straightforward, although the closest of attention is required to avoid the pitfalls illustrated by some of the more controversial cases. Whilst pregnancy may increase the personal responsibility of a woman, it in no way diminishes her entitlement freely to accept or to reject medical treatment. ‘The inviolability of a woman’s body is a facet of her fundamental freedom but so too is her right to take decisions relating to her unborn child based on access, at all stages, to the complete range of options available to her.’1 478

Pregnancy and Childbirth 12.40 An unborn child is not in law a separate person from its mother: until born, its interests are subservient. The competent mother can reject any invasion of her body whether necessary for the preservation of the life of her baby or herself. In managing potential capacity issues in pregnancy, the key for healthcare professionals is anticipation and preparation. Questions about the possible incapacity of a mother need to be addressed as early as possible. Timely, compassionate and clear communication between health professionals and pregnant women about potential issues in childbirth would obviate a significant number of the litigation issues which the authors have experienced. Greater use should be made of both advance decisions to refuse treatment and detailed advance birth planning, with accurate recording of the patient’s wishes in respect of the various potential eventualities during her labour and delivery to deal with the very small number of cases in which there is the possibility that a mother will suffer from a temporary loss of capacity in the face of particular procedures. ‘Loss of capacity in the process of labour may crucially inhibit a woman’s entitlement to make choices. At this stage the Court is required to step in to protect her, recognising that this will always require a complex, delicate and sensitive evaluation of a range of her competing rights and interests. The outcome will always depend on the particular circumstances of the individual case.’2 1 GSTT and SLAM v R [2020] EWCOP 4 at para 67. 2 Ibid.

For updating material and hyperlinks related to this chapter, see www. serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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Chapter 13

Feeding

A B

C

D

Introduction 13.1 NICE ‘Clinical Knowledge Summary for Eating Disorders’  13.2 Children 13.3 General principles  13.3 Children under the age of 16  13.3 Children aged 16 and 17  13.4 Effect of disorder on the approach to Gillick competence  13.5 Exercise of court’s jurisdiction: general approach  13.6 Deprivation of liberty  13.7 Mental Health Act 1983  13.8 Informal admission for treatment of a mental disorder  13.9 The scope of parental authority outside the MHA  13.10 Inherent jurisdiction  13.13 Mental Capacity Act 2005  13.14 Procedure 13.15 Adults 13.16 Capacitous adults – general rule  13.16 Capacitous adults detained under the Mental Health Act 1983  13.17 Adults lacking the capacity to consent  13.21 Treatment under the MHA  13.21 Where treatment cannot be provided under the MHA  13.22 Under the High Court’s inherent jurisdiction – Re Dr A 13.23 Under the MCA  13.24 Procedure – is an application necessary?  13.29 Procedure: Mental Health Act/Mental Capacity Act  13.30 Preparation 13.31 Procedure by the patient – injunction  13.32 Conclusion 13.33

A INTRODUCTION 13.1 Refusal of nutrition and hydration is often associated with mental disorder. The compulsion not to eat or drink can in some cases be so severe as to be life-threatening. These cases must be distinguished from those who capably and deliberately refuse to take food or drink, such as the rational prisoner who

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13.1  Feeding wishes to go on hunger strike in protest at their conviction or someone who wishes not to prolong their life in the face of the onset of a devastating illness. The principal diagnostic category where the sufferer exhibits self-starvation is anorexia nervosa. However, food refusal manifests itself as a symptom in a number of other mental disorders, including psychotic disorders and personality disorders. Most notably in cases of borderline personality disorder, it is not uncommon for the patient to become compelled to harm themselves and this may on occasion take the form of deprivation of food. Many of the cases concern anorexia. This serious condition is associated with a significantly heightened risk of dying and resistance to treatment.1 Along with involuntary feeding,2 issues include sedation and deprivation of liberty. Treatment plans can be very lengthy and the court may need to consider medical provision over a significant period. Disorders of eating tend to be suffered more by women than men, and the onset is generally in the teenage years.3 The prevalence of the disorders among those who are just on the point of attaining their majority – and so releasing themselves from even the theoretical control of parents – adds to the challenges of ensuring that treatment is lawful. Cases concerning children can involve secure accommodation orders under s 25 of the Children Act 1989, voluntary accommodation under s 20 of the Children Act 1989, care proceedings under s 31 of the Children Act 1989, needs assessments under the Children Act 1989 and Care Act 2014, detention under the Mental Health Act 1983 (‘MHA’) and Mental Capacity Act 2005 (‘MCA’) proceedings.4 Distorted beliefs about eating are a pathognomonic feature of anorexia nervosa and hence the clinical diagnosis can support a conclusion that the patient lacks the requisite capacity to decide whether or not to eat. However, under the MCA the assessment of capacity is decision-specific and it is common that people being treated for anorexia will have capacity over other matters. 1

The NHS Trust v L [2012] EWHC 2741 is an example of an anorexia case (for someone with a BMI of 7.7 and organ damage) which became an application for end-of-life orders. 2 We avoid the phrase ‘force-feeding’ as it carries connotations which do not necessarily correspond to the reality of what is done. 3 NICE Guidelines [NG69] Eating disorders: recognition and treatment published on 23 May 2017 (last updated on 16 December 2020): an eating disorder can happen to people from any cultural, religious or social background (para 1.1.2, p 5) and ‘Although eating disorders can develop at any age, be aware that the risk is highest for young men and women between 13 and 17 years of age’ (para 1.2.4, p 9): see bit.ly/NICE-ED-May-2017. 4 This chapter focuses on MHA and MCA proceedings.

NICE ‘Clinical Knowledge Summary for Eating Disorders’ 13.2 The NICE ‘Clinical Knowledge Summary for Eating Disorders’1 provides as follows: ●●

The main types of eating disorders are: ○○

Anorexia nervosa – low body weight due to restriction of food intake or persistent behaviour which interferes with weight gain and intense fear of gaining weight.

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Feeding 13.2 ○○

○○ ○○

●● ●●

Atypical eating disorders are most common, followed by binge eating disorders, and bulimia nervosa. Anorexia nervosa is the least common. Complications associated with eating disorders include: ○○ ○○ ○○ ○○

●●

Psychological disturbance – anxiety and mood symptoms. Social difficulties – disrupted relationships and isolation. Family/carer stress. Physical abnormalities – musculoskeletal, endocrine, cardiovascular, gastrointestinal, haematological and dental problems.

Diagnosis of an eating disorder is based on the person’s history, suggestive clinical features, and supported, where possible, by corroboration from a relative or friend. ○○

●●

Bulimia nervosa – recurrent episodes of uncontrolled eating of an abnormally large amount of food over a short time period (binge eating) followed by compensatory behaviour such as self-induced vomiting, laxative abuse or excessive exercise. Binge eating disorder – recurrent episodes of binge eating in the absence of compensatory behaviours. Episodes are marked by feelings of lack of control. Atypical eating disorders – closely resemble anorexia nervosa, bulimia nervosa, and/or binge eating, but do not meet the precise diagnostic criteria.

Clinicians should be aware that assessment may appear normal even in medically unstable people.

Management of a suspected eating disorder in primary care involves: ○○

○○

○○

Considering the need for emergency admission if the person is at risk of serious physical or psychological complications such as: –– Severely compromised physical health – BMI or body weight below a safe range, cardiovascular instability, hypothermia, reduced muscle power, concurrent infection, overall ill health or abnormal blood tests. –– Risk of refeeding syndrome. –– Lack of support at home. –– Acute mental health risk – risk of suicide attempt or serious self-harm. Referral of all people with a suspected eating disorder to an age-appropriate eating disorder service. –– Urgency of referral depends on the person’s circumstances and on clinical judgement. While awaiting assessment by the eating disorder team: –– Arranging regular review to monitor level of physical and mental health risk. –– Seeking advice from an appropriate specialist for people with co-morbidities (such as diabetes) and pregnant women. –– Considering the impact of malnutrition and compensatory behaviour on medication effectiveness and risk of side effects. 483

13.2  Feeding ●●

Management of a confirmed eating disorder in primary care involves: ○○

●●

Ensuring there is a clear agreement between primary and secondary care about responsibility for monitoring a person with an eating disorder. Monitoring ongoing level of risk to the person’s mental and physical health and managing complications – specialist input may be indicated.

1 Last revised in July 2019: see https://cks.nice.org.uk/topics/eating-disorders/. Other helpful guidance can be found as follows: –– A Framework for Community Mental Health Support, Care and Treatment for Adults and Older Adults (September 2019): see bit.ly/3nVQP4G. –– NHS England ‘Adult Eating Disorders: Community, Inpatient and Intensive Day Patient Care. Guidance for commissioners and providers’ (August 2019): see bit.ly/3k9F0a4. –– Addendum to the Children and Young People’s Commissioning Guide to include Inpatient and Intensive Day Care episodes of care (August 2019): see bit.ly/3CRuDPl. –– Eating Disorders Quality Standard (QS175) (September 2018): bit.ly/3BQ1aUT. –– Access and Waiting Time Standard for Children and Young People with an Eating Disorder: Commissioning Guide (July 2015): bit.ly/3CPyXyP. –– MARSIPAN: Management of Really Sick Patients with Anorexia Nervosa (October 2014): bit.ly/2ZUsW5k. –– Guidance for Commissioners of Eating Disorder services from the Joint Commissioning Panel for Mental Health (October 2013): bit.ly/3wiGseW.

B CHILDREN General principles Children under the age of 16 13.3 In the case of Gillick v West Norfolk and Wisbech Area Health Authority1 the court held that children who have sufficient understanding and intelligence to comprehend fully what is proposed in terms of medical treatment will have the competence to consent to that treatment. When a child is ‘Gillick competent’ their refusal of treatment recommended by a medical professional can be overridden by the court.2 So too could their consent to such treatment, although in practice this situation is unlikely to arise. The consent of a ‘Gillick competent’ child to treatment cannot be overridden by someone with parental authority. Recent case law also strongly suggests that where a Gillick competent child refuses treatment, it would not be advisable for clinicians to rely on the consent of someone with parental authority; rather, an application to court should be made.3 [1985] 3 All ER 402, HL. See Chapter 4: Deciding for Others – Children, para 4.3–4.6. Re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11; Re W (A Minor) (Medical Treatment: Court’s Jurisdiction) [1993] Fam 64. This was recently confirmed in Re X (A Child) (No 2) [2021] EWHC 65 (Fam): Sir James Munby held that any change in the established law (that the decision of a Gillick competent child or a child over 16 years to refuse medical treatment could be overridden by the court) would be a matter for Parliament (para 162). 3 See Chapter 4: Deciding for Others – Children, paras 4.1 and 4.14. 1 2

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Feeding 13.5

Children aged 16 and 17 13.4 Statute creates a presumption that consent to treatment or diagnosis given by a 16 or 17 year old – who has capacity to consent – is as valid as if given by an adult.1 It does not follow that a refusal by such a patient is a bar to treatment. The court is still able to give effective consent even where a 16 or 17 year old child has refused consent, as with younger children as set out above.2 The consent of someone with parental responsibility will be effective if a patient aged 16 or 17 lacks capacity. If they have capacity and refuse, it is likely that an application will be required.3 1

Family Law Reform Act 1969, s 8: Capacity for 16/17 year old will be determined by reference to the MCA 2005. See Chapter 4: Deciding for Others – Children, para 4.3. 2 Section 8(3) of the Family Law Reform Act 1969: ‘Nothing in this section shall be construed as making ineffective any consent which would have been effective if this section had not been enacted.’ 3 See para 13.9 below and Chapter 4: Deciding for Others – Children, paras 4.2, 4.9–4.13.

Effect of disorder on the approach to Gillick competence 13.5 The views of the child are an important factor to be taken into account by parents and doctors in deciding whether treatment should proceed. In general, those views carry greater weight the older the child and the greater their understanding. However, just as a diagnosis of anorexia may support a conclusion that an adult lacks capacity, so it may indicate that someone under 16 years old is not Gillick competent, and it is likely to reduce the significance to be accorded to the views of an otherwise mature child on the particular issue of feeding: ‘I have no doubt that the wishes of a 16 or 17 year old or indeed a younger child who is “Gillick competent” are of the greatest importance both legally and clinically … I personally consider that religious or other beliefs which bar any medical treatment or treatment of particular kinds are irrational, but that does not make minors who hold those beliefs any the less “Gillick competent.” They may well have sufficient intelligence and understanding fully to appreciate the treatment proposed and the consequences of their refusal to accept that treatment. What distinguishes W from them … is that it is a feature of anorexia nervosa that it is capable of destroying the ability to make an informed choice. It creates a compulsion to refuse treatment or only to accept treatment which is likely to be ineffective. This attitude is part and parcel of the disease, and the more advanced the illness, the more compelling it may become. Where the wishes of the minor are themselves something which the doctors reasonably consider need to be treated in the minor’s own best interests, those wishes will clearly have a much reduced significance.’1 In other words, the disorder itself may deprive the patient of the capacity – and in the case of an under 16 year old, the Gillick competence – to make a decision about eating for themselves. 1

Re W (A Minor) (Medical Treatment: Court’s Jurisdiction) [1993] Fam 64 at 80 per Lord Donaldson of Lymington MR (emphasis added). See Chapter 4: Deciding for Others – Children, paras 4.1 and 4.5.

485

13.6  Feeding

Exercise of court’s jurisdiction: general approach 13.6 As a matter of principle the courts will seek to accord respect to the views of a child: as stated by Balcombe LJ: ‘It will normally be in the best interests of a child of sufficient age and understanding to make an informed decision that the court should respect its integrity as a human being and not lightly override its decision on such a personal matter as medical treatment, all the more so if that treatment is invasive. ‘In my judgment, therefore, the court exercising the inherent jurisdiction in relation to a 16 or 17 year old child who is not mentally incompetent will … approach its decision with a strong predilection to give effect to the child’s wishes … The case of a mentally incompetent child will present different considerations, although even there the child’s wishes, if known, must be a very material factor …’1 In practical terms, if there is evidence before the court that a refusal of treatment will probably lead to death or serious injury, the refusal of a child, however near majority, is likely to be overruled: ‘Nevertheless, if the court’s powers are to be meaningful, there must come a point at which the court, while not disregarding the child’s wishes, can override them in the child’s own best interests, objectively considered. ‘Clearly such a point will have come if the child is seeking to refuse treatment in circumstances which will in all probability lead to the death of the child or to severe permanent injury.’2 In reaching this conclusion Balcombe LJ referred to the view, expressed in a blood transfusion case,3 that ‘this Court … should be very slow to allow an infant to martyr himself’.4 The court should apply the principles found in s 1 Children Act 1989, starting with the proposition that the child’s welfare is the paramount consideration.5 1 Re W (A Minor) (Medical Treatment: Court’s Jurisdiction) [1993] Fam 64 at 88. 2 Ibid. 3 In Re E (A Minor) (unreported), Ward J on 21 September 1990. 4 Re W, n1 above at 88. 5 Ibid at 93C per Nolan LJ. See Chapter 4: Deciding for Others – Children.

Deprivation of liberty 13.7 Anorexia is often associated with a resistance to treatment.1 Two distinct questions arise: approving treatment; and approving arrangements to give treatment if resisted. This section considers the second of these questions. There are a range of ways in which detention might be made lawful: under the Mental Health Act 1983 (‘MHA’); as an exercise of parental authority; by court authorisation under the inherent jurisdiction, and under the MCA. 1 In Re W (A Minor) (Medical Treatment: Court’s Jurisdiction) [1993] Fam 64 the 16-year-old patient was being treated in a specialist residential unit with feeding via a naso-gastric tube and with her arms in plaster. She refused to consent to moving to a different specialist unit but did consent to the naso-gastric tube. In Re C (A Minor) (Detention for Medical Treatment) [1997] 2 FLR 180 the 16-year-old patient went through cycles of discharge and absconding, each time being brought back to a residential unit by her parents. She said she would stay

486

Feeding 13.10 voluntarily, but the unit refused to readmit her without a court order to prevent her from leaving. See also Re B (A Minor) (Treatment and Secure Accommodation) [1997] 1 FCR 618, sub nom A Metropolitan Borough Council v DB [1997] 1 FLR 767.

Mental Health Act 1983 13.8 The detention of a mentally disordered child under 16 or of a young person aged 16 to 17 in hospital for involuntary feeding, is often achieved through the compulsory provisions of the MHA.

Informal admission for treatment of a mental disorder 13.9 It is possible for children under 16 who are Gillick competent and young people aged 16 or 17 with capacity to make the decision to give consent to their own admission to hospital for treatment of mental disorder as an ‘informal’ patient.1 Parental consent should not be relied upon to authorise admission for treatment if a child is Gillick competent2 or if the child is 16 or 17 and has capacity.3 Thus, where the patient is a Gillick-competent under-16, or is 16–17 years old, and refuses admission to hospital for the treatment of their mental disorder, in general if the treatment is deemed necessary and meets the criteria for the compulsory detention under Pt II of the MHA, this will need to be used, although in exceptional circumstances a court order under the High Court’s inherent jurisdiction may be appropriate. Even if the patient is 16–17 and lacks capacity, it would be unlikely that the MCA would be an appropriate route given the ineligibility provisions at s 16A of and Sch 1A to the MCA.4 1

As to 16–17 year olds, the position is covered by MHA s 131. As to those under 16 and Gillick competent, see MHA Code of Practice paras 19.20–19.37 and 19.24 in particular. For the English Code of Practice see www.gov.uk at bit.ly/2ahzopD, and Mental Health Act 1983: Code of Practice 2016 (Wales), paras 19.12 and 19.26. For the Welsh Code of Practice see bit. ly/3EVrZsBf. 2 MHA Code of Practice 2015 (England), paras 19.39 and 19.66. 3 MHA s 131(4). 4 See Chapter 5: Restraint and Deprivation of Liberty, paras 5.93–5.104, Chapter 6: Going to Court, paras 6.15–6.16, 6.76.

The scope of parental authority outside the MHA 13.10 Parental authority could also in theory be used for children under 16 who are not receiving treatment for mental disorder or not being detained in hospital under the MHA. The 2015 Code of Practice for the MHA states that parental consent can be used where the child is not Gillick competent.1 In Re D the court considered the circumstances of a 15-year-old boy with autism who was not Gillick competent. He resided in a locked unit in a hospital and was subject to 30-minute observations.2 The court held this was clearly a deprivation of liberty but that consent to it was within the zone of parental responsibility: his autism was a ‘fundamental factor’ to take into account because it reflected his maturity and ability to take decisions for himself. This decision has been questioned on a number of grounds including whether lengthy detention under parental authority complies with the requirement in article 5(4) to access a court to determine if detention is lawful. 487

13.10  Feeding D’s case came back to court when he turned 16.3 Keehan J therefore had a chance to respond to the points raised in relation to his earlier decision,4 and did so as follows: ‘D’s diagnosed conditions, were a very material factor in determining which decisions fall within the zone or scope of parental responsibility. D’s limited ability to make decisions on his own behalf was a material factor in determining the scope or zone of parental responsibility.’5 He continued: ‘On the facts of Trust A v X, especially the loving and caring relationships that his parents had with him and the close working relationship they enjoyed with D’s medical and other professions, I considered their decision to consent to D’s confinement in Hospital to be a proper exercise of parental responsibility.’6 This suggests that even where the child is not Gillick competent, parental consent will not always be sufficient to authorise a deprivation of liberty.7 1 Mental Health Act 1983 Code of Practice 2015 (England) paras 19.38–19.39: http://bit. ly/2ahzopD. See paras 19.58–19.59 in respect of 16–17 year olds with capacity; para 19.65 in respect of under 16s with Gillick competence. Mental Health Act 1983: Code of Practice 2016 (Wales) paras 19.40–19.41 see bit.ly/Wales-MHA-Code. See para 19.42 in respect of 16–17 year olds with capacity; see para 19.44–19.45 in respect of under 16s with Gillick competence. 2 Re D (A Child) (Deprivation of Liberty: Parental Responsibility) [2015] 3 FCR 60; generally cited as Re D (A Child; Deprivation of Liberty) [2015] EWHC 922 (Fam), but also known as Trust A v X. See also R v Kirklees Metropolitan Borough Council, ex p C (A Minor) [1992] 2 FLR 117, where it was held that a 12-year-old child had been validly detained in a mental hospital even though not under the MHA, on the authority of those having parental responsibility, but where the court made it clear that the child was not Gillick competent. 3 Birmingham City Council v D (A Child) [2016] EWCOP 8. 4 Accepting some minor areas where language ‘could and should have [been] ‘expressed … more felicitously and precisely’ (Birmingham City Council v D; N3 above, para 102). 5 Ibid, para 109. 6 Ibid, para 110. 7 See Chapter 5: Restraint and Deprivation of Liberty, paras 5.70–5.73.

13.11 Where a child is Gillick competent, the use of parental authority in circumstances such as Re D is more difficult; it is open to doubt whether doctors, acting on the authority of parents, can detain a Gillick competent child against his will without the authority of the court. Such a step might contravene the requirement of Art 5 of the ECHR that any deprivation of liberty must be in accordance with a procedure prescribed by law. The European Court of Human Rights has held that a child of 12 could be detained in a psychiatric hospital on the basis of his mother’s consent without breach of Art 5 as this was a responsible exercise of her parental authority and not a deprivation of liberty attributable to the State.1 However, this is widely regarded as a problematic case, and it may be doubted whether the court would adopt the same stance today. The authors’ view is that parental consent should not be relied on if involuntary detention of a Gillick competent child is thought to be necessary. 1

Nielsen v Denmark (1989) 11 EHRR 175 para 64 (by 9 votes to 7). (See Chapter 5: Restraint and Deprivation of Liberty, para 5.70.) Note also that the circumstances did not amount to a deprivation of liberty, para 73, something else which might be decided differently now. In Re D (para 13.10, n2 above) the court expressly did not rely on Nielsen (Re D, para 47 calling Nielsen ‘controversial’). See the dicta in Re K (A Child) [2001] 1 FCR 249 at paras 29 and 99 on the limits of parental authority in the context of secure accommodation orders under s 25 of the Children Act 1989.

488

Feeding 13.12 13.12 In the case of a young person of 16 or 17, parental consent cannot authorise a deprivation of liberty. In the case Re D cited above, appeals were made to the Court of Appeal and then the Supreme Court.1 In Re D (A Child),2 the Supreme Court by a majority3 held that it was not within the scope of the operation of parental responsibility for parents to consent to living arrangements for a 16- or 17-year-old child who lacked capacity if those arrangements would otherwise amount to a deprivation of liberty within the meaning of Art 5 of the ECHR. Lady Hale, who gave the lead judgment, concluded that: ‘… it was not within the scope of parental responsibility for D’s parents to consent to a placement which deprived him of his liberty. Although there is no doubt that they, and indeed everyone else involved, had D’s best interests at heart, we cannot ignore the possibility, nay even the probability, that this will not always be the case. That is why there are safeguards required by article 5. Without such safeguards, there is no way of ensuring that those with parental responsibility exercise it in the best interests of the child, as the Secretaries of State acknowledge that they must. In this case, D enjoyed the safeguard of the proceedings in the Court of Protection. In future, the deprivation of liberty safeguards contained in the Mental Capacity Act 2005 (as amended by the Mental Capacity (Amendment) Act 2019) will apply to children of 16 and 17. I would therefore allow this appeal …’4 Lady Black did not consider that: ‘… the Gillick test extends to the aspect of parental responsibility with which the present case is concerned, or that the Gillick decision can, without more, be treated as regulating the situation where the objective is not to contract the boundaries of parental responsibility, but to extend them. In my view … it is of real significance that in Gillick, the House of Lords were dealing with a materially different issue. The respondent recognises that the focus of Gillick was specific to the issue of consent to medical treatment of children under 16, but invites this court to conclude that the test laid down there applies beyond that scope and up to the age of majority. I accept that certain things that were said in Gillick were capable of being interpreted as applying to a situation such as the present, but it would not, in my view, be appropriate to interpret them in that way, so as to draw into the Gillick net a situation which is diametrically opposed to that with which the House was concerned (not the tempering of parental responsibility in relation to the under 16 age group, but its expansion in relation to those aged 16 and 17 so as to give it a role which would not otherwise be afforded by the common law). My unwillingness to adopt this interpretation is reinforced by what I perceive to be the distinct, and rather special, features of the field of deprivation of liberty with which we are here concerned. It follows that the rights of a parent in relation to restricting the liberty of a child remain, at common law … The inescapable result of that is, I think, that it is not within the scope of parental responsibility for parents to give authority for their 16 year old child to be confined in a way which would, absent consent, amount to a deprivation of liberty. In so saying, I do not intend in any way to water down the important changes brought about by Gillick or to alter the way in which it has been applied in many spheres of family law. I have only been concerned to consider its application in the very specific context of confinement of children of the ages of 16 to 18.’5 489

13.12  Feeding Re D is discussed in Chapter 5: Restraint and Deprivation of Liberty, paras 5.71–5.72. [2019] UKSC 42. Followed in Re X (A Child) (No 2) [2021] EWHC 65 (Fam) and A LBC v X (Wardship: Parental Responsibility: Deprivation of Liberty) [2020] 1 FLR 1280. 3 Ladies Hale, Black and Arden were in the majority. Lords Carnwath and Lloyd-Jones dissented. 4 Re D (A Child) (n1 above), para 49. 5 Ibid, para 88. 1 2

Inherent jurisdiction 13.13 The inherent jurisdiction of the court in respect of children extends to authorising the detention of a child patient in a place where treatment can be provided, so long as the court’s jurisdiction is not ousted by the accommodation being secure accommodation under s 25 of the Children Act 1989.1 The court has power to direct that reasonable force be used if necessary. However, it is important that careful attention should be paid to the safeguards under the Children Act 1989 when exercising the inherent jurisdiction and any order made is likely to be of limited duration and subject to review.2 1

Re C (A Minor) (Detention for Medical Treatment) [1997] 2 FLR 180; see also Re T (A Child) [2021] UKSC 35; Re B (A Minor) (Treatment and Secure Accommodation) [1997] 1 FCR 618, sub nom A Metropolitan Borough Council v DB [1997] 1 FLR 767 per Cazalet J. 2 See Chapter 5: Restraint and Deprivation of Liberty and in particular at paras 5.85–5.87.

Mental Capacity Act 2005 13.14 Finally, the MCA can be applied to those aged 16 and 17 years old to authorise a deprivation of liberty by applying to the court under s 4A of the MCA for an order under s 16 of the MCA. The current administrative regime for authorising the deprivation of liberty in Sch A1 to the MCA apply only to those aged over 18.1 The result of the Supreme Court decision in Re D (A Child) as set out above2 is that applications will have to be made for all children aged 16 or 17 who are to be deprived of their liberty. 1

2

MCA s 2(5) and MCA Sch A1, paras 13 and 50. See Chapter 5: Restraint and Deprivation of Liberty, para 5.84. The Liberty Protection Safeguards, which will replace these in due course, will extend to those aged 16 and over – see bit.ly/Gov-UK-LibertyPSafe. See Chapter 5: Restraint and Deprivation of Liberty, para 5.107ff. [2019] UKSC 42; see para 13.12 above.

Procedure1 13.15 Where it is desired to obtain approval for treatment which the child’s doctors consider is in their best interests to be given, and for which the child is unable or unwilling to give consent, the following steps need to be taken: ●●

If the child is not Gillick competent, the parents or those having parental responsibility should be consulted about the proposed treatment and, if possible, their consent obtained. If such consent is obtained, that is sufficient legal authority to proceed with treatment. The position will obviously have to be explained carefully to the child, whose cooperation should be sought if at all possible.

490

Feeding 13.15 ●● ●●

●●

If the child is Gillick competent and refuses even to allow their parents to be informed of / involved in the decision-making process, their wishes should generally be respected.2 If the child is Gillick competent and refuses treatment, or if the child is not Gillick competent and parental consent cannot be obtained,3 then – unless the case is of such extreme urgency that there is no time to do so – an application should be made to the Family Division of the High Court. There are two procedural routes available for those under 16: under the inherent jurisdiction of the court; or for a specific issue order under s 8 of the Children Act 1989. Where final declarations are sought (as is usually the case) then an application in respect of a child under 16 should be made both as an application for a specific issue order and under the inherent jurisdiction and issued in the High Court.4 An application for a 16 or 17 year old should be made to a High Court judge under the inherent jurisdiction and, if the child lacks capacity, in the Court of Protection under the MCA.5 If the child is already a ward of court (now unusual) then the application should be made in the wardship proceedings. The application should be accompanied by a draft order. Some thought is required about the relief sought. This could involve: –– –– –– ––

●●

In preparing for such an application those seeking the order should provide evidence of: –– –– –– –– –– ––

●● ●●

●●

lengthy recitals setting out assurances between the parties or given to the court; declarations of best interests or lawfulness;6 orders providing consent to treatment and/or that certain steps may or will be taken; provisions about treatment, residence and deprivation of liberty.

the medical history; the present condition and prognosis of the patient; the need for treatment; the capacity and views of the patient; the views of the parents or those having parental responsibility; the risks and benefits of the treatment, and the possible results if treatment is not given.

Second opinion evidence or independent expert opinion is always helpful, and should be obtained if at all possible. It is always important that the most up-to-date information is made available to the court. Therefore applicants should not merely rely on evidence even a few weeks’ old, but must be prepared to inform the court of the current up-to-date position. In determining the application the court will consider the evidence (including the proposed treatment plan) and weigh up the child’s best interests on the same basis as it would for an adult. Although the MCA does not apply to children under 16, the same principles are broadly applied.7

1 See Chapter 4: Deciding for others – Children and Chapter 6: Going to Court. 2 AB v CD [2021] EWHC 741 (Fam) at para 67, per Lieven J: ‘The very essence of Gillick is, in my view, that a parent’s right to consent or “determine” treatment cannot trump or

491

13.15  Feeding overbear the decision of the child. Therefore, the doctors could lawfully advise and treat the child without her mother’s knowledge or consent. In Gillick, the parent did not have the right to know that the treatment was being given, so it makes little sense to assume that the parent could act to stop the child’s decision being operative on whether the treatment takes place or not.’ See Chapter 4: Deciding for others – Children, paras 4.5–4.8, 4.14. 3 Where no person can legally consent to the treatment proposed consider Great Ormond Street Hospital for Children NHS Foundation Trust v MK [2020] EWHC 3476 (Fam) in which Peel J made a child arrangements order to confer parental responsibility on a close relative with whom the minor lived so as to avoid the need for further applications (if there was agreement regarding the way forward). Also see An NHS Foundation Trust v A, M, P, A Local Authority [2014] EWHC 920 (Fam), where Hayden J was required to consider a treatment plan in respect of a 15-year-old girl who weighed 5½ stone, and who was not ‘Gillick competent’ to make decisions regarding her food intake. As her mother did not agree to the treatment plan (which included receiving fluids, nutrition and medication through a Nasojejunal tube), the court was asked to make declarations as to the lawfulness of the actions of the Trust. The declarations were made and are helpfully set out at Annexe B to the judgment. 4 See Form C66: Application for inherent jurisdiction order in relation to children: see bit.ly/ FormC66. 5 Re JM (a child) [2015] EWHC 2832 at paras 24 and 27. There may be reasons for bringing a case under the inherent jurisdiction even where the child is considered to lack capacity, since this route avoids the need to determine capacity; whilst it should not be used as a short cut, this may be appropriate where the determination of capacity is itself contrary to the child’s best interests: Cambridge University Hospitals NHS Foundation Trust v GW [2021] EWHC 2105 (Fam). See Chapter 4: Deciding for Others – Children, para 4.10. 6 See St Helens BC v PE and Manchester PCT [2006] EWHC 3460 (Fam) considering relief in the context of medical treatment of adults. 7 See Chapter 4: Deciding for Others – Children, paras 4.21ff.

C ADULTS Capacitous adults – general rule 13.16 As in any other sphere of medical activity, the general rule is that a capacitous adult has the absolute right to refuse any form of treatment. Capacitous adults are fully entitled to refuse to take food or drink for any reason or for no reason at all. The starting point therefore is that every citizen who is of age and of sound mind has the right to harm or – since the Suicide Act 1961 – to kill themselves, and is entitled to make decisions about their treatment, even if those decisions bring about their death. As Lord Goff observed in Airedale NHS Trust v Bland: ‘… the principle of self-determination requires that respect must be given to the wishes of the patient, so that if an adult patient of sound mind refuses, however unreasonably, to consent to treatment or care by which his life would or might be prolonged, the doctors responsible for his care must give effect to his wishes, even though they do not consider it to be in his best interests to do so.’1 Additionally, a capacitous adult prisoner who chooses to go on hunger strike and to refuse any form of life-saving care must, therefore, usually be allowed to do so.2 As stated by Thorpe J in Robb: ‘The right of the [capacitous] defendant to determine his future is plain. That right is not diminished by his status as a detained prisoner … against the specific right of self-determination held by the defendant throughout his

492

Feeding 13.17 sentence there seems to me in this case to be no countervailing state interest to be set in the balance.’3 Hoffmann LJ in B v Croydon Health Authority stated: ‘Even if the refusal to eat is tantamount to suicide, as in the case of a hunger strike, he cannot be compelled to eat or be forcibly fed.’4 In the authors’ experience this principle has been upheld in a number of unreported cases where the conscious decision of a prisoner to starve themselves to death has not been interfered with by the court.5 It is difficult to understand the significance of this question without an awareness of the history of hunger strikes by prisoners, the challenge they present to state authorities and the leading role they have played in developing medico-ethical and legal views about consent to treatment. Prominent examples include the force-feeding of suffragettes in the five years prior to World War I,6 the hunger strikes of 1980/81 resulting in the death of ten Irish Republican prisoners and the reported use of force-feeding at Guantanamo Bay in the 2000s. 1 2

[1993] AC 789 at para 864. Secretary of State for the Home Department v Robb [1995] Fam 127 (discussed in Chapter 15: Withdrawing and Withholding of Treatment, para 15.58; Chapter 17: Treating Suicidal Patients at paras 17.7ff). 3 Robb (n2 above) per Thorpe J at 132D. 4 [1995] Fam 133 at 137 per Hoffman LJ: for a patient to allow themselves to die by declining food has been said not to amount to suicide: see Robb (n2 above). 5 And see Brightwater Care Group v Rossiter [2009] WASC 229 (20 August 2009) discussed in Chapter 17: Treating Suicidal Patients at para 17.12. 6 Reflected in Leigh v Gladstone [1909] 26 TLR 139, which held that prison officials had a duty to preserve the health of prisoners and it was for a jury to decide if the means adopted were necessary for that purpose (clearly not a statement of the law now). The problem resulted in the ‘Cat and Mouse Act’ aka Prisoners (Temporary Discharge for Ill Health) Act 1913, which provided for temporary release of hunger striking suffragettes until they were fit enough to be re-arrested.

Capacitous adults detained under the Mental Health Act 1983 13.17 Adults will often retain their legal capacity to consent to or refuse medical treatment despite being lawfully detained under the MHA. However, s 63 of the MHA provides for treatment without such consent: ‘The consent of a patient shall not be required for any medical treatment given to him for the mental disorder from which he is suffering [, not being a form of treatment to which section 57, 58 or 58A above applies,]1 if the treatment is given by or under the direction of the [approved clinician in charge of the treatment].2’ Thus, involuntary feeding under s 63 of the MHA will be lawful, in spite of the patient’s capacitous refusal of treatment, if: ●● ●●

the steps to be taken are properly described as ‘medical treatment’ (for example, naso-gastric feeding can be ‘medical treatment’);3 the treatment is for the mental disorder for which the patient is being detained.

493

13.17  Feeding Section 145 of the MHA (as amended) states that ‘medical treatment’ includes ‘nursing, psychological intervention and specialist mental health habilitation, rehabilitation and care’ and s 145(4) states: ‘Any reference in this Act to medical treatment, in relation to mental disorder, shall be construed as a reference to medical treatment the purpose of which is to alleviate, or prevent a worsening of, the disorder or one or more of its symptoms or manifestations.’ While it may seem surprising that a patient who is compelled by a mental disorder to deprive themselves of food to the point of death might have the mental capacity to refuse treatment designed to alleviate the consequences, there is no necessary connection between such a disorder and incapacity. In B v Croydon Health Authority4 a woman who had a borderline personality disorder as a result of which she had starved herself to a near lethal extent, and who was refusing food, was found to have the mental capacity to entitle her at common law to refuse both food and the treatment designed to save her life. Had she not been detained under the MHA, there would have been no means of requiring her to have treatment. Careful consideration of the facts, however, will be required in every case to establish whether the patient does have the relevant capacity, as there may sometimes be more than one possible view. It was said by Hoffman LJ on an appeal in B v Croydon Health Authority: ‘I am bound to say that I have some difficulty with the judge’s conclusion … I am as impressed as the judge was by her intelligence and self-awareness. It is, however, this very self-awareness and acute self-analysis which leads me to doubt whether at the critical time, she could be said to have made a true choice in refusing to eat … I find it hard to accept that someone who acknowledges that in refusing food at the critical time she did not appreciate the extent to which she was hazarding her life, was crying inside for help but unable to break out of the routine of punishing herself, could be said to be capable of making a true choice as to whether or not to eat.’5 Treatment of B by naso-gastric feeding was held to be permitted under s 63 of the MHA. The difficulty in reaching that conclusion was that the link between the treatment and the disorder was less apparent in the case of personality disorder than anorexia. Indeed the only treatment for the personality disorder was said to be psychotherapy. The court in B v Croydon Health Authority found that involuntary feeding was a form of treatment because treatment must be defined widely and include ancillary acts: ‘It does not however follow that every act which forms part of that treatment within the wide definition in s 145(1) must in itself be likely to alleviate or prevent a deterioration of that disorder. Nursing and care concurrent with the core treatment or as a necessary prerequisite to such treatment or to prevent the patient from causing harm to himself or to alleviate the consequences of the disorder are, in my view, all capable of being ancillary to a treatment calculated to alleviate or prevent a deterioration of the psychopathic disorder. It would seem to me strange if a hospital could, without the patient’s consent, give him treatment directed to alleviating a psychopathic disorder showing itself in suicidal tendencies, but not without such consent be able to treat the consequences of a suicide attempt. In my judgment the term ‘medical treatment … for the mental disorder’ in s 63 includes such ancillary acts.’6 494

Feeding 13.17 The Court of Appeal thus in reviewing the versions of ss 63 and 145 of the MHA7 then in force concluded that medical treatment included a significant range of acts ancillary to core treatment, including nursing and care: ●● ●● ●● ●●

concurrent with the core treatment; or as a necessary prerequisite to such treatment; or to prevent the patient from causing harm to himself; or to alleviate the consequences of the mental disorder.

As Ms B’s self-harming behaviour and therefore her refusal to eat were products of her mental disorder, the proposed medical treatment, namely nasogastric tube feeding, was treatment within s 63 and could be performed without the patient’s consent. The B decision was followed by Re VS (Adult: Mental Disorder).8 The patient had a history of trying to harm herself. She was formally admitted under s 3 of the MHA. She refused liquid or food and there was a real risk that she could die from renal damage. The Trust sought a declaration that forced tube feeding and/or intravenous hydration would be lawful. The court held that such treatment would be lawful: it was clear that she was suffering from a major depressive illness and her refusal to eat or drink was a product of this disorder; thus, by virtue of s 63 of the MHA it would be permissible for the hospital to hydrate or feed the patient artificially. As stated by Peter Bartlett, while s 63: ‘applies only to “treatment … for mental disorder”, the courts have been expansive as to the meaning of this phrase, interpreting it in some circumstances to include enforced feeding,9 Caesarean section operations,10 and “milieu therapy”.11’12 1

Note when reviewing cases from before November 2008 the words in brackets were substituted by the Mental Health Act 2007. Section 63 originally stated: ‘The consent of a patient shall not be required for any medical treatment given to him for the mental disorder from which he is suffering, not being treatment falling within section 57 or 58 above, if the treatment is given by or under the direction of the responsible medical officer.’ Sections 57, 58 and 58A relate to surgery which can destroy brain tissue, medication prescribed for longer than three months and electro-convulsive therapy respectively. 2 Ibid. 3 Airedale NHS Trust v Bland [1993] AC 789. 4 B v Croydon Health Authority [1995] Fam 133; see Chapter 5: Restraint and Deprivation of Liberty, para 5.5; Chapter 17: Treating Suicidal Patients at paras 17.38–17.39. 5 Ibid, at 140–141. 6 Ibid, at 138–139 per Hoffmann LJ. And see Chapter 3: Deciding for Others – Adults, paras 3.4–3.8. 7 The versions of ss 63 and 145 of the MHA in force at the time of B v Croydon was noted to give ‘a wide definition to the term “medical treatment.” It includes “nursing, care, habilitation and rehabilitation under medical supervision."’ (B v Croydon at 138). 8 [1995] 3 Med L Rev 292. 9 Citing B v Croydon and Brady (see para 13.18 below). 10 Citing Tameside and Glossop Acute Services Trust v CH [1996] 1 FLR 762 (Fam). 11 Citing MD v Nottinghamshire Healthcare NHS Trust [2010] UKUT 59 (AAC); Reid v Secretary of State for Scotland [1999] 1 All ER 481 (PC) and noting ‘"Milieu therapy” occurs when the structured environment of the ward results in a reduction in the manifestations of an individual’s disorder.’ (see n10 above). 12 Bartlett, “The Necessity Must Be Convincingly Shown To Exist”: Standards For Compulsory Treatment For Mental Disorder Under The Mental Health Act 1983 (2011) 19 Medical Law Review 514–547 at 521.

495

13.18  Feeding 13.18 In R v Collins and Ashworth Hospital Authority, ex p Brady,1 a detained patient had commenced a hunger strike in protest at being moved between wards and subsequently expressed the view that he wished to die since there was nothing for him to live for, as he accepted that he would die in custody. The hospital commenced enforced naso-gastric tube feeding which he challenged. Understanding the intentions and motivations of the patient caused the expert psychiatrists and the judge some difficulty: ‘It is not possible for me to arrive at a certain conclusion as to what the Applicant’s present intention is. That is one of the consequences of trying to assess the workings of such a disordered personality and mind … In my judgment, this is probably correct and the likelihood (but not the certainty) is that the Applicant is playing the system … there is at least a reasonable possibility that the present intention of the Applicant is to protest and/or to win a power struggle but not to die.’2 Having found that he was ‘playing the system’ and engaging in a battle of wills with his clinical team rather than wishing to die, the court found that the decision to continue the hunger strike was a manifestation of the personality disorder from which the prisoner suffered. Further, on the balance of probabilities, this battle of wills and his personality meant that he was not properly able to make a decision as to the risks involved in refusing food and so was incapacitated in relation to that issue. As the feeding amounted to treatment for his personality disorder, it could be given without his consent under s 63 of the MHA. 1 2

[2000] 1 MHLR 17 and see Chapter 17: Treating Suicidal Patients at paras 17.22–17.23. [2000] 1 MHLR 17 at 25, para 51.

13.19 In A Local Health Board v JK,1 Lieven J was required to determine whether the proposed treatment of a Local Health Board in Wales fell within the scope of s 63 of the MHA. JK was a prisoner on remand for the alleged murder of a family member and was a restricted patient under s 48 of the MHA who was refusing to eat and wished to die. The court determined that JK had capacity to make the decision to refuse food and medical treatment, but that the proposed treatment (which included force-feeding by way of nasogastric tube) was treatment within the scope of s 63. The court reached this conclusion as JK’s refusal to eat was held to be a manifestation or symptom of his autistic spectrum disorder. Lieven J stated: ‘I do accept that with a condition such as autism which is a fundamental part of JK’s personality, it is exceptionally difficult to see how any decision making is not a manifestation of that disorder. I also accept that it is possible that many people faced with JK’s situation would feel despair and potentially be suicidal. However, I do not think the task for me is to try to compare JK’s response to his situation with that of a hypothetical person without autism. It is rather, to try to analyse the degree to which JK’s own response relates to his condition, and the way his mind works because of that condition.’2 Lieven J concluded that the proposed involuntary feeding was ‘certainly capable’ of being treatment for the manifestation of JK’s mental disorder, but clearly stated that her decision: ‘… does not mean that I by any means accept that force feeding JK would be in his best interests, or critically would be “treatment” that falls within the definition in s.145(4) of the MHA, as being “to alleviate or prevent a worsening of the disorder …”. It is apparent that force feeding is a highly 496

Feeding 13.21 intrusive process, which involves sedating the patient whilst the nasogastric tube is inserted and potentially having to restrain the patient for fairly prolonged periods. This process would be extremely upsetting for any patient, but for JK with his ASD and his aversion to eating in front of other people, the process would be even more traumatic. JK said in oral evidence that he viewed the possibility as abhorrent, and it was clear from that response how incredibly upsetting for all concerned having to go through that process would be. If it came to that stage close consideration would necessarily have to be given to the terms of article 3 ECHR and the caselaw such as Herczegfalvy v Austria3 and the test of medical necessity.’4 On the facts of that case, the clinicians agreed that further discussions were required regarding the terms of the treatment plan and, if there was any dispute regarding its implementation, that the matter should be restored to court – not on a best interests basis, but for a full merits review that involuntary feeding fell within s 145(4) at the relevant time. 1 2 3 4

[2019] EWHC 67 (Fam). See the end of the judgment for the order that was made. Ibid, para 72. [1993] 15 EHRR 437. Ibid, para 74.

13.20 It is of course the case that feeding is not always treatment for an underlying mental disorder. In NHS Trust v Dr A1 the patient (who lacked capacity) was on hunger strike following a dispute with the UK Border Agency about his passport. He was ultimately detained under the MHA but the evidence of the treating psychiatrist was that feeding was not considered to be treatment for his delusional disorder. As set out above,2 Baker J considered that it was undesirable to extend the provisions of s 63 too far, and it was held that in borderline cases an application should be made to the Court to approve treatment. 1

[2013] EWHC 2442 (COP), [2014] Fam 161, [2014] 2 WLR 607, [2013] Med LR 561, (2014) 136 BMLR 115. 2 See para 13.23 below. See also Chapter 3: Deciding for Others –Adults, paras 3.4–3.8.

Adults lacking the capacity to consent Treatment under the MHA 13.21 In practice, if a patient suffers with anorexia nervosa they are likely to lack the capacity to decide whether or not to eat, due to fixed, distorted beliefs about eating. Anorexics are, however, often treated under s 63 of the MHA, which permits treatment for mental disorder to be given without consent (to patients both capable and incapable of giving consent).1 So far as anorexia is concerned, it has been held that nasogastric feeding is treatment for the mental disorder for the following reasons: ‘… it is pointed out that the mental disorder from which she is suffering is anorexia nervosa which is an eating disorder and relieving symptoms is just as much a part of treatment as relieving the underlying cause. If the symptoms are exacerbated by the patient’s refusal to eat and drink, the mental disorder becomes progressively more and more difficult to treat and so the treatment by naso-gastric tube is an integral part of the treatment of

497

13.21  Feeding the mental disorder itself. It is also said that the treatment is necessary in order to make psychiatric treatment possible at all. ‘This argument, in my judgment, is correct and makes it clear that feeding by naso-gastric tube in the circumstances of this type of case is treatment envisaged under s 63 and does not require the consent of the patient.’2 Thus, if the patient is lawfully detained under the MHA for treatment for an eating disorder, it will be possible, under s 63 of the MHA, to impose the physical treatment of naso-gastric tube feeding on the patient. It will be a matter of medical judgment whether this is appropriate or not.3 1 ‘The consent of a patient shall not be required for any medical treatment given to him for the mental disorder from which he is suffering, not being a form of treatment to which section 57, 58 or 58A above applies, if the treatment is given by or under the direction of the approved clinician in charge of the treatment’ (as amended by Mental Health Act 2007). See Chapter 3: Deciding for Others – Adults, paras 3.4–3.8. To be read in conjunction with s 145(4) of the MHA which provides that ‘[a]ny reference in this Act to medical treatment, in relation to mental disorder, shall be construed as a reference to medical treatment the purpose of which is to alleviate, or prevent a worsening of, the disorder or one or more of its symptoms or manifestations.’ 2 South West Hertfordshire Health Authority v KB [1994] 2 FCR 1051 at 1053 per Ewbank J. 3 In A Local Health Board v JK [2019] EWHC 67 (Fam) at para 75, Lieven J stated that a review of a clinical decision to treat under s 63 of the MHA could be done by way of a judicial review (ie, to review the decision that involuntary feeding is treatment which falls within s 145(4) of the MHA). If the matter is already before the court, Lieven J held that ‘the most straightforward route is to give JK liberty to apply to bring the matter back before me sitting in the Family Division, if needed. There is no benefit, and potentially additional cost and complication, by requiring a judicial review action to be commenced.’

Where treatment cannot be provided under the MHA 13.22 While there have been a number of cases in which declarations have been sought from the court to sanction treatment of adults lacking capacity who are not detained under the MHA,1 this is not a category of case where court proceedings are always necessary. Where an incapacitous adult suffering from an eating disorder cannot be treated under the MHA, can treatment be given under s 5 of the MCA? Involuntary feeding often lasts for a significant period and may involve force and deprivation of liberty. For a patient who objects but is too weak to resist, it is a serious invasion of autonomy. For those reasons it will often be the case that s 5 of the MCA is not a secure basis to embark on – or to continue – a treatment programme for someone with an eating disorder. It is suggested that an application to court will be required where there is likely to be controversy (with the patient, family or friends), or where providing treatment will require restraint, especially over a period of time, or where the arrangements will be so restrictive as to entail depriving the patient of their liberty. 1

F v Riverside Mental Health NHS Trust [1994] 2 FCR 577; South West Hertfordshire Health Authority v KB [1994] 2 FCR 1051; B v Croydon Health Authority [1995] Fam 133.

Under the High Court’s inherent jurisdiction – Re Dr A 13.23 There are also legal difficulties arising from the interplay of the MHA and the MCA. The facts of A NHS Trust v Dr A1 provide an example of a case 498

Feeding 13.23 where involuntary feeding could not be provided under the MHA. Dr A was an Iranian asylum seeker who went on hunger strike when the UK Border Agency refused to return his passport to him. Although he had previously been detained under the MHA for involuntary feeding, his detention had been discharged at the point the application was made to the Court of Protection, and interim declarations were made under the provisions of the MCA. At the time of the final hearing, he had been detained again under s 3 but, critically, not for a disorder treated by feeding. His psychiatrist’s evidence explained the difference: ‘The purpose of the section 3 admission is so we can administer appropriate psychotropic drugs via the nasogastric tube. We do not see food as treatment for his mental illness. The administration of food via the nasogastric tube has not made a difference to his underlying mental state and indeed his mood has deteriorated. The food is administered to prevent him from dying … In my view, it is extremely difficult to disentangle how much of his hunger strike is due to underlying depression or possible delusional disorder. It is important to note that, when he was previously treated with antipsychotics and there was a marked improvement in his mental state, there was still no change in his views regarding continuing with the hunger strike. At the moment it is helpful to separate out what we see as treatment for any possible mental health disorder (i.e. psychotropic medication) from medical treatment required to keep him alive.’2 Baker J recognised the distinction between Dr A’s case and that of someone suffering an eating disorder, saying that: ‘In this case, therefore, the clinicians treating Dr. A. feel strongly that artificial nutrition and hydration and ancillary treatment are, on the facts of the case, treatment for a physical disorder, starvation and dehydration, and not for the underlying mental disorder. Dr. A. is not suffering from an eating disorder. Whilst feeding him may make him feel better, it is not treating him for a mental disorder as it would be were he suffering from anorexia nervosa.’3 He declined to direct that treatment by way of involuntary feeding could be provided under the MHA, saying that where the applicability of the MHA was uncertain an application should be made to court: ‘On this point I have found the views articulated by the treating clinicians, and in particular Dr. WJ, persuasive. She does not consider that the administration of artificial nutrition and hydration to Dr. A. in the circumstances of this case to be a medical treatment for his mental disorder, but rather for a physical disorder that arises from his decision to refuse food. That decision is, of course, flawed in part because his mental disorder deprives him of the capacity to use and weigh information relevant to the decision. The physical disorder is thus in part a consequence of his mental disorder, but, in my judgement, it is not obviously either a manifestation or a symptom of the mental disorder. This case is thus distinguishable from both the Croydon case and Brady. ‘I also accept … that it is generally undesirable to extend the meaning of medical treatment under the MHA too far so as to bring about deprivation of liberty in respect of sectioned or sectionable patients beyond what is properly within the ambit of the MHA. I recognise the need for identifying, where 499

13.23  Feeding possible, a clear dividing line between what is and what is not treatment for a mental disorder within the meaning of the MHA; but I venture to suggest that in medicine, as in the law, it is not always possible to discern clear dividing lines. In case of uncertainty, where there is doubt as to whether the treatment falls within section 145 and section 63, the appropriate course is for an application to be made to the court to approve the treatment. That approach ensures that the treatment given under section 63 of the MHA will be confined to that which is properly within the definition of section 145 as amended. It would help to ensure that patients with mental disorders are, so far as possible, treated informally rather than under section. Finally, it ensures compliance with Article 8 and provides the patient with a more effective remedy than would otherwise be available, namely a forensic process to determine whether the treatment is in his best interests.’4 Dr A was suffering from a delusional disorder and lacked capacity to make the decision to accept or refuse food and water. Treatment by way of involuntary feeding was considered to be in his best interests. On the particular facts of the case, Dr A’s s 3 detention at the same place where the involuntary feeding was also to be carried out rendered him ineligible to be deprived of his liberty by virtue of MCA Sch 1A and s 16A(1). Baker J therefore authorised the treatment and ensuing deprivation of liberty under the alternative route of the inherent jurisdiction. In other cases where involuntary feeding is considered to be outside the scope of s 63 but the patient lacks capacity to make the decision to eat and drink, it may well be possible to authorise treatment and any deprivation of liberty directly under the MCA. However, where the patient objects to the treatment (as did Dr A), an application to the court should be made. 1 2 3 4

[2013] EWCOP 2442. Ibid, para 74. Ibid, para 75. Ibid, paras 79–80.

Under the MCA 13.24 In Avon and Wiltshire Mental Health Partnership v WA, Hayden J was asked to determine whether a young Palestinian man, WA, had the capacity to make decisions about his nutrition and hydration and – if he lacked capacity – what would be in his best interests.1 WA had litigation capacity and had instructed his own solicitor. The factual matrix, including his reasons for wanting to die (which related to a dispute with the Home Office regarding his age) and the decision regarding subject matter capacity were exceptionally complex. The court concluded, in what was described as a ‘challenging exercise’, that WA lacked capacity to make decisions about his nutrition and hydration, but that it was not in his best interests for forced naso-gastric feeding to be carried out without his agreement due (in particular) to his past history of abuse and torture. Hayden J referred to the language used within the evidence to effect WA’s compliance with the treatment plan (‘gentle persuasion’; ‘tacitly compliant’; ‘passive acceptance’; ‘tacit cooperation’ and ‘acquiescence’)2 and stated: ‘Set out in this way they illustrate the complexity of the challenge to the treating clinicians and nurses, particularly to having regard to WA’s 500

Feeding 13.26 background. Moreover, looked at collectively, the phrases reveal themselves to be that which they are i.e. euphemisms for force feeding. A plan which stated specifically that WA will be force fed unless he actively resists would, I suspect, cause most people to recoil from it. It does not become any less disagreeable when dressed in softer language.’3 Hayden J concluded by stating that following his ruling, the decisions will ultimately be taken by WA with the advice and encouragement of his family and the clinicians, ‘but no more than that’. Consequently, in this particular case, the wishes and feelings of WA were determinative in the court’s best interests decision. 1 2 3

[2020] EWCOP 37. Ibid, para 95. Ibid, para 95.

13.25 Distinct from the above example in WA, true eating disorder cases may also come to court under the MCA. Local Authority v E is an example of a case where the MHA had previously been used but where the actual case was brought and considered under the provisions of the MCA.1 E was 32 and had been binge eating and using alcohol since the age of 12. At age 15 she was first admitted to a specialist clinic on account of anorexia. She was receiving palliative care when the case was referred to court and Peter Jackson J described it as the first case he had seen of life-sustaining care possibly not being in the best interests of someone fully aware of their situation. The only alternative was admission for at least a year to a specialist unit which would use force or sedation to feed E by way of naso-gastric tube, which had a 20–30% chance of successful treatment. After anxious consideration, the judge determined that, on balance, the violation of E’s Arts 3 and 8 rights was proportionate and necessary to protect her Art 2 rights, despite the apparent acceptance of death by E and her family.2 1 [2012] EWHC 1639, 127 BMLR 133, [2012] HRLR 29. Compare this care plan with the conclusion in Miss W that being ‘rendered unconscious for up to 6 months and fed by tube’ was unprecedented and subject to numerous ethical objections (Betsi Cadwaladr University Local Health Board v Miss W [2016] EWCOP 13). 2 The case is often contrasted with that of Re L [2012] EWHC 2741 (COP), where the patient’s detention under s 3 of the MHA had been rescinded after the eating disorder team concluded that all treatments had been exhausted and compulsory treatment had been shown only to reinforce her eating disorder and increase her disability. Again, the matter fell to be considered under the MCA, but on the facts of the case it was concluded that further treatment was not in her best interests.

13.26 This can be contrasted with A NHS Foundation Trust v Ms X1 where the chance of successful treatment was put at no more than 5%. Ms X was a young woman with a 14-year history of anorexia nervosa and alcohol dependency. During that time she had been repeatedly and compulsorily detained so that she could be provided with nutrition and hydration. Once she returned to an acceptable weight she was discharged into the community where psychiatric and support services were provided in order to address the underlying disorder. Over the course of her treatment she had become alcohol-dependent and by the time of trial she had advanced liver disease. The Trust sought declarations that it was not in Ms X’s best interests to be subject to further compulsory detention and force-feeding and that it would be lawful not to provide her with nutrition and hydration with which she was non-compliant.

501

13.26  Feeding The inevitable consequence of granting the Trust’s application was that, unless Ms X changed her mind and started to eat appropriately, then she would die. The judge acknowledged that the highest priority should be attached to the preservation and sanctity of life. Ms X had capacity to make decisions in respect of alcohol and treatment for alcohol-related illness but not in respect of nutrition. The fact that further involuntary feeding would exacerbate her alcohol abuse was a significant factor. The judge stated: ‘The purpose of re-feeding an anorexic patient is to keep that patient alive whilst psychotherapy, talking therapies, can be facilitated in an endeavour to investigate and treat the underlying anorexia; this has been shown over many years not to work for Ms X. So it is that the medical professionals firmly believe that not only would in-patient treatment once again involve painful, invasive and wholly unwelcome procedures for Ms X, but it would be pointless in terms of achieving long-term treatment, and would be likely in their view to intensify her consumption of alcohol on discharge from hospital, thereby actually increasing her mortality, and accelerating her demise. As it is, the doctors opine that her life expectancy is measured in months.’2 Importantly, he added: ‘Medical treatment is invariably designed to achieve the protection and preservation of life. But there is a paradox in this case: that if I were to compel treatment, I may (and the doctors argue strongly that I would) be doing no more than facilitating or accelerating the termination of her life. I have no jurisdiction to make ‘best interests’ decisions about Ms X’s drinking; that remains wholly within her power. Any treatment for her anorexia (particularly if that is in-patient and compelled) is likely – on past experience – to provoke subsequent increased, sustained and dangerous alcohol consumption which will (in the medical view) hasten Ms X’s death.’3 On the facts of the case and according appropriate weight to Ms X’s wishes (as set out in a letter from Ms X provided on the eve of his decision), the judge agreed that compulsory feeding was not in her best interests and granted the Trust’s application. The court has reached a similar conclusion in a number of other cases (reported4 and unreported) in circumstances where there is evidence of a long history of in-patient and community treatment plans having been attempted without success. Second opinion evidence or expert evidence is crucial in such cases, as the almost inevitable endorsement of the proposed treatment plan by the court (which in effect, provides no ‘active’ treatment) is the patient’s death. 1 2 3 4

[2014] EWCOP 35, [2015] 2 FCR 418, [2015] COPLR 11, (2014) 140 BMLR 41. Ibid, para 4. Ibid, para 42. See eg Cheshire & Wirral Partnership NHS Foundation Trust v Z [2016] EWCOP 56.

13.27 A more recent example involving a true eating disorder case is Northampton Healthcare NHS Foundation Trust v AB where Roberts J was required to consider whether a patient with a severe and enduring eating disorder in the form of anorexia nervosa lacked the capacity to decide whether she should be tube-fed.1 The case is interesting as AB (just like WA2) had capacity to litigate, and (as in Ms X’s case3) no party was seeking a decision 502

Feeding 13.29 that it was in her best interests to undergo further tube-feeding. Irrespective of the capacity finding, the decision of Roberts J (and the decision of Hayden J in WA) was that any form of involuntary feeding would be inappropriate. As regards capacity to make decisions regarding food intake, Roberts J held that: ‘… given the chronic nature of AB’s illness and its current clinical presentation, her decisions in connection with food, calorific intake and consequent weight gain are so infected and influenced by her fixated need to avoid weight gain at all costs that true logical reasoning in relation to these specific matters is beyond her capacity or ability. Whether one calls this an “overvalued idea” or the fundamental manifestation of an illness which renders a sufferer powerless to resist a compulsion which, in this case, has proved incompatible with a normal life expectancy seems to me to matter not. It is the effect on AB which this illness has had which lies at the heart of the decision I have to make in relation to capacity. She plainly has the ability to use and weigh information about many aspects of the life she currently experiences. She has very sound and straightforward reasons for not wishing to experience the trauma and pain of further admissions to hospital for the purposes of tube feeding with all that it will entail. Those reasons are based solidly on her lived experience of previous episodes and the anticipation of being forced to undergo similar trauma on a future occasion. It seems to me that is different from her ability to respond rationally to the advice which she is being, and has been, given about the overriding imperative to gain weight if her death through starvation or some related cause is to be avoided. Her judgement in relation to this is critically impaired by an intense and irrational fear of weight gain. She may objectively appreciate that she will only avoid death in the weeks or months ahead if she finds the ability to overcome this illogical fear but she appears powerless to reach any other decision which will preserve her life. In my judgment, the fact that she does not want to die and sees many reasons to continue living are, in themselves, the clearest manifestation of the extent to which her judgment is impaired in relation to this narrow field of decision making.’4 1 2 3 4

[2020] EWCOP 40. [2020] EWCOP 37, see para 13.24 above. [2014] EWCOP 35, see para 13.26 above. [2020] EWCOP 40, para 64.

13.28 Finally, the case of A Mental Health Trust v ER involved the withholding of life sustaining medical treatment in the form of clinically assisted nutrition and hydration to a patient who had a long standing diagnosis of anorexia nervosa.1 The case has a helpful summary of the authorities2 and also emphasises the importance of the court being the ultimate arbiter of capacity, even where the parties have agreed that the patient lacks capacity to make decisions regarding treatment for their anorexia. 1 2

[2021] EWCOP 32. Ibid, para 29.

Procedure – is an application necessary? 13.29 Where a patient lacks the capacity to consent to or refuse treatment rendered necessary by an eating disorder, it may in certain circumstances be given under s 63 of the MHA or in reliance on s 5 of the MCA, without reference to the court. 503

13.29  Feeding An application to court for a declaration or order should, however, be made where: ●●

●● ●●

There is a dispute either (i) as to the patient’s capacity or (ii) as to what is in the best interests of the patient – such a dispute may be (a) with the patient themselves or (b) others who seek to represent the interests of the patient (such as family members, or an Independent Mental Capacity Advocate (‘IMCA’)) or (c) between medical professionals or other public bodies. Providing the treatment in question will involve more than transient forcible restraint or deprivation of the patient’s liberty.1 The treatment falls within the ambit of the practice guidance issued by the Vice President on 17 January 2020.2 In particular: ‘8.

If, at the conclusion of the medical decision-making process, there remain concerns that the way forward in any case is: (a) finely balanced, or (b) there is a difference of medical opinion, or (c) a lack of agreement as to a proposed course of action from those with an interest in the person’s welfare, or (d) there is a potential conflict of interest on the part of those involved in the decision-making process(not an exhaustive list)



‘Then it is highly probable that an application to the Court of Protection is appropriate. In such an event consideration must always be given as to whether an application to the Court of Protection is required.

‘9.

Where any of the matters at paragraph 8 above arise and the decision relates to the provision of life-sustaining treatment an application to the Court of Protection must be made. This is to be regarded as an inalienable facet of the individual’s rights, guaranteed by the European Convention on Human Rights (‘ECHR’). For the avoidance of any doubt, this specifically includes the withdrawal or withholding of clinically assisted nutrition and hydration ….

‘12. Separately to the matters set out above, an application to court may also be required where the proposed procedure or treatment is to be carried out using a degree of force to restrain the person concerned and the restraint may go beyond the parameters set out in sections 5 and 6 Mental Capacity Act 2005. In such a case, the restraint will amount to a deprivation of the person’s liberty and thus constitute a deprivation of liberty. The authority of the court will be required to make this deprivation of liberty lawful.’3 ●●

Where the consequences of the proposed course of action are serious and irreversible, such as An NHS Foundation Trust v Ms X where a Trust obtained court approval of its decision not to give further treatment which the patient did not want (which is not, of course, the same as withholding any treatment).4

504

Feeding 13.30 ●●

It is thought likely that proceedings will subsequently be taken against those providing or failing to provide the treatment.

1 As was the case in A NHS Trust v Dr A [2013] EWCOP 2442, [2014] Fam 161, discussed at para 13.23 above; and by analogy with the guidance in FG: see Chapter 12: Pregnancy and Childbirth, paras 12.17–12.18; and Chapter 5: Restraint and Deprivation of Liberty, paras 5.61–5.66. 2 [2020] EWCOP 2: Applications relating to medical treatment: Guidance authorised by the Honourable Mr Justice Hayden, the Vice President of the Court of Protection. See bit.ly/VPGuide-Jan-20. 3 Ibid (emphasis in original guidance). 4 [2014] EWCOP 35, [2015] 2 FCR 418, [2015] COPLR 11, (2014) 140 BMLR 41; see para 13.26 above.

Procedure: Mental Health Act/Mental Capacity Act 13.30 Generally an application for an adult lacking capacity will be made to the Court of Protection under the MCA 2005 (forms COP1, COP1B and COP3).1 However, the application should also be made to the High Court if the inherent jurisdiction may need to be invoked. This is relevant where a declaration is sought that it is lawful not to treat under s 63 MHA, or where the patient may be ‘ineligible’ by virtue of Sch 1A to the MCA to be deprived of their liberty under s 16A of the MCA. In that situation it has been held that the Court of Protection cannot authorise the deprivation of the patient’s liberty but that the High Court can do so by the exercise of the inherent jurisdiction: ‘In cases of uncertainty where there is doubt as to whether the treatment falls within section 145 and section 63, the appropriate course is for an application to be made to the court.’2 The application is made by way of a Pt 8 claim. The decision whether or not to detain under the MHA is ultimately a public law decision,3 although the Court of Protection plainly has power to determine the preliminary questions of capacity and validity of any advance decisions.4 Which ‘route’ is ultimately decided upon will be dictated by the facts of the particular case. If it appears likely that both jurisdictions may be required, an application should be made to the High Court.5 1 See Chapter 6: Going to Court. 2 A NHS Trust v Dr A [2013] EWCOP 2442, [2014] Fam 16: see para 13.23 above. See also Cheshire & Wirral Partnership NHS Foundation Trust v Z [2016] EWCOP 56 where Hayden J said that in making a best interests determination under the MCA, he recognised that the responsible clinicians would proceed to discharge Z from detention under the MHA. He therefore did not make any orders under the inherent jurisdiction although he would have had the power to do so. And see A Healthcare and B NHS Trust v CC [2020] EWHC 574 (Fam) (for example) where Lieven J was asked to determine whether CC’s refusal of dialysis was a manifestation of his mental disorder which could be treated under s 63 of the MHA. CC had diagnoses of psychotic depression and a mixed personality disorder and was detained under s 3 of the MHA. CC was also deaf, had type 1 diabetes, and suffered complex physical health issues caused by chronically poor compliance with the required diabetic treatment, including renal failure. The court considered the interplay between the MHA and the MCA and determined that dialysis was treatment within the scope of s 63 of the MHA. 3 See MHA s 13 and compare Nottinghamshire Healthcare NHS Trust v RC [2014] EWCOP 1317 (see Chapter 2: Consent & Capacity – Adults, para 2.37; Chapter 3: Deciding for Others – Adults, para 3.7; Chapter 17: Treating Suicidal Patients, paras 17.12, 17.35 and 17.41).

505

13.30  Feeding 4

Such as those made in both Local Authority v E [2012] EWHC 1639, 127 BMLR 133, [2012] HRLR 29 (see para 13.21 above) and A NHS Foundation Trust v Ms X [2014] EWCOP 35, [2015] 2 FCR 418, [2015] COPLR 11, (2014) 140 BMLR 41 (see para 13.26 above). 5 In Dr A (n2 above) the application was made in the Court of Protection but to a High Court judge, who then used the court’s inherent jurisdiction to authorise treatment and deprivation of liberty after Dr A was found ineligible to be deprived of his liberty under the MCA.

Preparation 13.31 Given the predictability of a refusal of treatment during a crisis, preparatory steps should be taken as long beforehand as possible. These include: ●● ●●

●●

●●

●●

●●

A full discussion with the patient, where this is practicable, to consider the options which will confront the patient and the carers if, and when, there is a crisis. An assessment at as early a stage as possible of the patient’s capacity to consent to or refuse medical treatment. The patient may have capacity to make advance decisions1 about treatment for a crisis before that event occurs, even if capacity is likely to be lost at that time. If possible, patients should be encouraged to decide for themselves, when capable of doing so, what should happen. Full records of any such decision must be made and if possible approved by the patient. If these steps are taken, many legal difficulties will be avoided. However, it should be noted that advance decisions cannot prevent compulsory treatment under the MHA. If the point comes when treatment considered to be necessary to save life is being refused and no prior advance decision is available, an assessment must be made as to the urgency of the case. This should be realistic. False alarms help no-one but, on the other hand, delay should not be allowed where the patient’s life is at risk.2 A decision should be made as to whether the patient is suitable for treatment under the MHA. If this is appropriate, the necessary steps to detain the patient and provide treatment should be undertaken. In general, no court application will then need to be made by those treating the patient.3 If MHA treatment is inappropriate,4 consideration must be given to the patient’s capacity to refuse the proposed treatment. If the patient is found to possess legal capacity, then their wishes must be respected. If there is a substantial dispute about capacity it will be appropriate to make an application to the court for a declaration as to capacity. If the patient lacks capacity, and the proposed treatment does not fall within s 63, consideration will need to be given as to whether the treatment is in the patient’s best interests by application of s 4 of the MCA, with the starting presumption being Art 2 of the ECHR (the right to life). Factors taken into account will include: –– –– –– ––

the wishes and views of the patient expressed during interludes when they had the relevant capacity; the views currently expressed by the patient; the views of close family or partners (or an IMCA, if appointed) on what they perceive the patient would have wanted; the views of the treating clinicians/ professionals; 506

Feeding 13.31 –– ––

●●

●●

●●

●●

●● ●●

the likely effectiveness of the treatment; the availability of alternatives; the risks and benefits of the treatment proposed, including the risks arising from chemical sedation/physical restraint which may be required to effect treatement.5

If treatment is agreed by those responsible for the care of the incapacitated patient, generally no court application will be necessary, but if force is required to administer such treatment it would be prudent to seek the approval of the court6 and if the arrangements for treating will amount to a deprivation of the patient’s liberty, either the authority of the court or a standard or urgent DOLS (‘deprivation of liberty’) authorisation under Sch A1 to the MCA must be obtained if the MHA is not applicable.7 If an application is to be made, however urgent the case, evidence of the need for treatment, the patient’s incapacity and the reasons why the treatment is in the patient’s best interests will be required. Appropriate statements of the relevant evidence should, therefore, be prepared and, if at all possible, a copy of the treatment plan (even if in draft form) provided. If it is decided to make an application to the court, as much notice as possible should be given to the patient and practical assistance given to enable them to obtain legal advice and assistance. The Official Solicitor should be notified and, unless there is an obvious alternative, invited to become the patient’s litigation friend in adult medical cases. Lawyers at the Official Solicitor’s office are available to discuss applications in relation to medical treatment before an application is made. They should be given as much notice as possible of any application. Any enquiries about adult medical and welfare cases should be addressed to a lawyer in the healthcare and welfare team at the Office of the Official Solicitor, telephone 020 3681 2751, email: [email protected]. In urgent cases, a lawyer in the healthcare and welfare team should be contacted by telephone in addition to email.8 The same steps should be taken where the declaration sought is that it is lawful not to provide treatment which is available under the MHA.9 Interim declarations can be granted10 and hearings can be conducted by telephone where appropriate, and at any time of the day or night. During the pandemic, numerous remote hearings on a video platform have taken place.

Local Authority v E [2012] EWHC 1639, 127 BMLR 133 (see para 13.25 above) is a good example of the difficulties of this. E twice sought to make an advance decision refusing the treatment which the court ordered and each was held ineffective in circumstances where E was unwell throughout the period. A ‘full, reasoned and contemporaneous’ assessment of capacity was required. See Chapter 2: Consent & Capacity – Adults, paras 2.32FF for advance decisions generally. 2 See Chapter 3: Deciding for Others – Adults, para 3.45 and in relation to pregnancy see: Chapter 12: Pregnancy and Childbirth, para 12.20. In South West Hertfordshire Health Authority v KB [1994] 2 FCR 1051 (para 13.21 above) KB was estimated to have 14 to 21 days to live. In Local Authority v E (n1) E was on an end-of-life pathway receiving palliative care and the court considered a much earlier application should have been made. 3 See para 13.21 above. 4 There may well be occasions when the view is taken that an adolescent patient should not be stigmatised by an MHA section at such a young age, if treatment can be provided under the MCA. See also Dr A, where it was considered that feeding would not constitute treatment for 1

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13.31  Feeding the mental disorder from which Dr A was suffering: A NHS Trust v Dr A [2013] EWCOP 2442, [2014] Fam 16, see para 13.23 above. 5 See Chapter 3: Deciding for Others – Adults, paras 3.12FF. 6 See Chapter 6: Going to Court. 7 See Chapter 5: Restraint and Deprivation of Liberty. 8 See Practice Note regarding the appointment of the Official Solicitor in welfare proceedings in the Court of Protection (including serious medical treatment cases) (February 2021): see bit. ly/OS-PD-Feb-21. 9 See, for example, A NHS Foundation Trust v X [2014] EWCOP 35: see Chapter 3: Deciding for others – Adults, para 3.25. This is the only reported case where the Court of Protection has specifically made a declaration that treatment under the MHA was not in the best interests of the patient by application of the MCA. There was no legal argument on the point and as the decision whether or not to detain under the MHA is not a best interests decision which the Court of Protection has power to make on behalf of an incapacitated person, but is ultimately a public law decision (by application of s 13 of the MHA), and as the responsibility for making an MHA application rests with the AMHP (under s 13), this decision may be seen to unnecessarily merge two separate statutory regimes. As an AMHP may not lawfully apply for the admission of a patient whose discharge has been ordered by the decision of an MHRT of which the AMHP is aware unless that AMHP has formed a reasonable and bona fide opinion that they have information not known to the tribunal which puts a significantly different complexion on the case as compared with that which was before the tribunal (R (von Brandenburg) v East London and City MH NHS Trust [2003] UKHL 58 applied), consideration should be had (when drafting the terms of the relief sought) to omit reference to the MHA, but to recite that a patient could not be lawfully admitted to hospital for compulsory treatment following the determination of a Court of Protection application unless an AMHP forms a reasonable and bona fide opinion that they had information not known to the Court of Protection which put a significantly different complexion on the case. 10 See Chapter 6: Going to Court: para 6.39.

Procedure by the patient – injunction 13.32 Where the carers intend to proceed with treatment without first applying to the court, the patient may wish to contest that decision either because they do not accept that there is a lack of capacity or that the treatment is necessary or in their best interests. In such circumstances, the patient, or a litigation friend acting on their behalf, may apply to the court for an injunction. The following procedure may be followed:1 ●●

●●

●●

The Court of Protection can grant an interim declaration or interim injunction and in an urgent case will frequently do so, in order to preserve the status quo until the full merits of a case have been able to be considered. Obviously, where there is an urgent need to decide whether or not life-saving treatment should be given, the court will be more likely to make an interim decision preserving life at the first hearing. However, the first step on behalf of a patient should be to commence proceedings and seek an interim injunction restraining the clinicians from proceeding with the proposed treatment. This may be brought before the commencement of an action, but generally a Court of Protection application should be issued if this is possible and, where not possible, any order will include an undertaking to issue forthwith. Evidence in the form of statements verified with a statement of truth should be obtained to support any assertion that the patient has the capacity to refuse treatment and from expert witnesses that it is not in the patient’s interests to have the treatment imposed against their will. Urgent steps should be taken to have the interim application heard as soon as possible.

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Feeding 13.33 ●●

Depending upon the nature of the case, it may not be necessary to proceed to a substantive trial, as the issues will have been sufficiently resolved by the interim hearing. However, given the ongoing nature of food refusal, a substantive hearing with evidence from all parties – and perhaps a jointly instructed independent expert – may be required.

1 See Chapter 6: Going to Court.

D CONCLUSION 13.33 Disorders of eating and consent to treatment are complicated by the prevalence of the disorder amongst teenagers and young adults. This adds to the challenges of ensuring that treatment given is legally justified. It is clear from the procedural requirements outlined above that a medical practitioner is not under an obligation to seek a declaration from the court in every situation. It is, however, essential that legal and medical practitioners constantly refer back to the general obligation to consider the best interests of the patient of whatever age. It must be recognised that in a controversial field such as this, medical and professional practice will be constantly under review, and it should not, therefore, be assumed in any case that involuntary treatment is necessarily the appropriate solution.

For updating material and hyperlinks related to this chapter, see www.serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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Chapter 14

Religious Observance and Objections to Treatment

A Introduction  14.1 B Capacitous Adults  14.2 General principle  14.2 Power to treat under s 63 of the Mental Health Act 1983  14.3 Steps to be taken  14.4 Confirmation that the patient has the mental capacity to make the decision in question  14.5 Ability to understand the information relevant to the decision  14.6 Ability to use or weigh the information as part of the decisionmaking process  14.7 Advice  14.8 Undue influence  14.9 Scope of a decision to refuse treatment  14.10 The role of relatives and close friends  14.11 Recording a decision taken against medical advice  14.12 C Incapacitous Adults  14.13 General principle  14.13 Advance decisions  14.14 Reported oral advance decisions  14.15 The effect of uncertainty  14.16 Written declarations  14.17 Religious observance in incapacitous patients  14.18 Religious Ps – assumptions should not be made as to beliefs  14.19 D Children  14.20 General principle  14.20 Best interests  14.21 Religious objections to withdrawal of treatment from a child  14.22 Raqeeb  14.23 Fixsler  14.24 High Court proceedings  14.25 Court of Appeal and ECHR  14.27 Where should life support be withdrawn?  14.28 Conclusion on Fixsler  14.29

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14.1  Religious Observance and Objections to Treatment Ceiling of care cases  14.30 The ‘Gillick competent’ child  14.31 Re X (No 2) – Rolling orders  14.32 E Procedural Issues  14.33 Anticipation  14.33 Notice and consultation  14.34 Evidence  14.35 Change of circumstance  14.36 F Conclusion  14.37

A  INTRODUCTION 14.1 On occasion, patients will object to proposed medical treatment on religious grounds. The circumstance in which this has arisen most frequently has been in relation to the administration of blood transfusions. The most commonly encountered religious objectors to the use of blood in treatment are Jehovah’s Witnesses, whose interpretation of Christian scripture is such that they believe that the use of blood and some blood products is prohibited by laws laid down in the Bible, such as: ‘You shall not partake of the blood of any flesh, for the life of all flesh is its blood. Anyone who partakes of it shall be cut off.’1 Where the refusal of treatment involves – in the view of the medical attendants – the inevitability of death, very difficult choices and decisions face all concerned, whether the patient is a young child whose parents are seeking to limit medical treatment or a capacitous adult with a settled and principled view. This chapter seeks to set out the considerations which will apply when treatment is refused on religious grounds. It is essential in any well-run medical institution, where treatment which might be objected to on religious grounds is offered, that doctors and management alike have considered the problem in advance, ensured that staff are informed of the issues, and developed a general policy for the handling of such cases.2 Often problems in this field can be foreseen and managed with sensitive counselling, discussion and consideration of alternative approaches to treatment. Nothing can be more destructive of the necessary confidence between doctor and patient than a hurried decision to impose treatment on a patient against their will or against the wishes of the parents of a child. Similarly, religious observance and practices may also influence a patient’s decisions about medical treatment, and impact upon their health and wellbeing, and so present a clinical challenge to those offering treatment to them. For example, an objection by a Muslim patient who wishes to fast during Ramadan may not represent an objection to treatment per se, but the observance of such religious practices may interfere with or compromise their medical treatment.3

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Religious Observance and Objections to Treatment 14.1 There is a complex interplay of how our secular law deals with religion whilst respecting the basic human right to follow any faith. As Munby LJ put it in Re G (Education: Religious Upbringing):4 ‘Religion – whatever the particular believer’s faith – is not the business of government or of the secular courts, though the courts will, of course, pay every respect to the individual’s or family’s religious principles. Article 9 of the European Convention for the Protection of Human Rights and Fundamental Freedoms 1950 (the European Convention), after all, demands no less. The starting point of the common law is thus respect for an individual’s religious principles, coupled with an essentially neutral view of religious beliefs and a benevolent tolerance of cultural and religious diversity. ‘It is not for a judge to weigh one religion against another. The court recognises no religious distinctions and generally speaking passes no judgment on religious beliefs or on the tenets, doctrines or rules of any particular section of society. All are entitled to equal respect, so long as they are “legally and socially acceptable”[5] and not “immoral or socially obnoxious”[6] or “pernicious”[7].’ 1 Leviticus 17:14. This is not the place for study of the grounds for this belief or the controversy that surrounds it. It is suggested that practitioners who may have to confront the very real problems thrown up by it need to acquaint themselves with the arguments for and against it. It should not be assumed that all Jehovah’s Witnesses adhere to the same beliefs. For the view of JW.org see //bit.ly/2a2CQFW. See bit.ly/2adt1XS for a Wikipedia overview; see bit.ly/2aeRlp7 for an interesting report on How Jehovah’s Witnesses are changing medicine’ by Schaffer, New Yorker, 12 August 2015. See bit.ly/2KQzHNM for the Evening Standard story Jehovah’s Witness new mother dies after she refuses to be given blood, 10 November 2014. See bit.ly/2adub5J for The Sydney Morning Herald story, Pregnant Jehovah’s Witness’ decision to refuse treatment “harrowing” for hospital staff after mother and baby die, 6 April 2015. See bit.ly/39xCPIT for the CBC story on Refusal of blood transfusions key to deaths of 2 Jehovah’s Witnesses, coroner finds. See also Munby LJ in Re G (Children) [2012] EWCA Civ 1233 at [81]: ‘A poignant example is provided by the aftermath of Re E (A Minor) (Wardship: Medical Treatment) [1993] 1 FLR 386, where Ward J had required a 15¾ year old Jehovah’s Witness to have a blood transfusion despite his, and his parents’, vehemently expressed religious objections. A few years later, not long after he had attained his majority, E’s leukaemia returned. He refused a blood transfusion, going bravely to his death steadfast in his religious faith.’ More recently the clear view of the treating team in A Teaching Hospital NHS Trust v DV (a child) [2021] EWHC 1037 (Fam) was that to give any blood products to the 17-year-old DV, a practicing Jehovah’s Witness, would be damaging to his welfare and counterproductive. The Trust were granted a declaration that the doctors might conduct surgery without recourse to blood products under any circumstances, even if the need arose to save life. 2 Many NHS Trusts will have established policies for managing blood product refusal and offering alternatives that may be acceptable to Jehovah’s Witnesses, such as intra-operative cell salvage, using derivatives of primary blood products or the use of synthetic collids etc. See also Royal College of Surgeons (2016) Caring for patients who refuse blood: a guide to good practice for surgical management of Jehovah’s Witness and other patients who decline transfusion; see bit.ly/RCSE-Blood. 3 R (Imran Bashir) v The Independent Adjudicator, HMP Ryehill and the Secretary of State for Justice [2011] EWHC 1108 concerned a failure to provide a urine sample on religious grounds. It highlights that, if an issue of religious belief or practice arises in any decisionmaking process, the Art 9 rights of the person involved must be considered. If it can be demonstrated that there were good reasons in a particular case why a drugs test had to be given, this could make an interference with religious freedom proportionate. 4 [2012] EWCA Civ 1233, [2013] 1 FLR 677, paras 35–36. 5 Purchas LJ in Re R (A Minor) (Residence: Religion) [1993] 2 FLR 163 at 171. 6 Scarman LJ in Re T (Minors) (Custody: Religious Upbringing) (1981) 2 FLR 239 at 244. 7 Latey J in Re B and G (Minors) (Custody) [1985] FLR 134 at 157, referring to scientology.

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14.2  Religious Observance and Objections to Treatment

B  CAPACITOUS ADULTS General principle 14.2 As considered in detail elsewhere,1 the capacitous adult has the absolute right to refuse treatment, for any reason, good or bad, or for no reason at all, even where that refusal may be seen as ‘unwise’ as it may lead to serious injury, deterioration in health or death. A capacitous refusal based on religious grounds must be respected, however much others may disagree with it.2 The Art 8 ECHR right to privacy and physical inviolability and the Art 9 ECHR right to freedom of religious belief3 are fundamental human rights. As stated by the European Court of Human Rights: ‘Freedom of thought, conscience and religion is one of the foundations of a “democratic society” within the meaning of the Convention. It is, in its religious dimension, one of the most vital elements that go to make up the identity of believers and their conception of life, but it is also a precious asset for atheists, agnostics, sceptics and the unconcerned. The pluralism indissociable from a democratic society … depends upon it.’4 Religion is also specifically mentioned in the preamble to the UN Convention on the Rights of Persons with Disabilities (2006) in respect of persons with disabilities who may also be subject to discrimination on the basis of religion. Article 4 of the Convention states that it is intended to ensure that persons with disabilities are entitled to enjoy ‘all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability.’ The imposition of invasive treatment on a capacitous adult patient without their consent will render those giving that treatment liable to civil and criminal proceedings for assault and trespass to the person.5 As stated in Jehovah’s Witnesses of Moscow v Russia: ‘The freedom to accept or refuse specific medical treatment, or to select an alternative form of treatment, is vital to the principles of selfdetermination and personal autonomy. A competent adult patient is free to decide, for instance, whether or not to undergo surgery or treatment, or, by the same token, to have a blood transfusion. However, for this freedom to be meaningful, patients must have the right to make choices that accord with their own views and values, regardless of how irrational, unwise or imprudent such choices may appear to others.’6 In the Canadian case of Malette v Shulman, a Jehovah’s Witness who was brought into hospital unconscious, bearing a card stating ‘NO BLOOD TRANSFUSION!’, and who was given transfusions to save her life, received damages. Robins JA said in the Ontario Court of Appeal: ‘The right to determine what shall be done with one’s own body is a fundamental right in our society. The concepts inherent in this right are the bedrock upon which the principles of self-determination and individual autonomy are based. Free individual choice in matters affecting this right should, in my opinion, be accorded very high priority.’

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Religious Observance and Objections to Treatment 14.2 And: ‘A doctor is not free to disregard a patient’s advance instructions any more than he would be free to disregard instructions given at the time of the emergency. The law does not prohibit a patient from withholding consent to emergency treatment, nor does it prohibit a doctor from following his patient’s instructions. While the law may disregard the absence of consent in limited emergency circumstances, it otherwise supports the right of competent adults to make decisions concerning their own health.’7 As stated by Hazel Briggs, this decision clearly demonstrated ‘the tension that often exists between established, and well intentioned, medical practice, and the kind of provisions contained within advance directives.’8 Penelope Weller commented that, whilst it was recognised by the Ontario Court of Appeal that the right to personal control may be displaced by state interests in some circumstances: ‘Nevertheless, the high social value attributed to bodily integrity places it above the state’s interest in the preservation of life and health of the person, and above the interest of the state in preserving the integrity of the medical profession.’9 1 2 3

4 5

6 7

See Chapter 2: Consent & Capacity – Adults, para 2.27. The authors are aware of a recent (unreported) obstetric case where P refused blood tests or blood products on religious grounds, which was hastily withdrawn after an assessment confirmed the individual had capacity to make those decisions. European Convention on Human Rights: Article 8 – Right to respect for private and family life: ‘(1) Everyone has the right to respect for his private and family life, his home and his correspondence. ‘(2) There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.’ Article 9 – Freedom of thought, conscience and religion: ‘(1) Everyone has the right to freedom of thought, conscience and religion; this right includes freedom to change his religion or belief and freedom, either alone or in community with others and in public or private, to manifest his religion or belief, in worship, teaching, practice and observance. ‘(2) Freedom to manifest one’s religion or beliefs shall be subject only to such limitations as are prescribed by law and are necessary in a democratic society in the interests of public safety, for the protection of public order, health or morals, or for the protection of the rights and freedoms of others.’ And see Art 18 of the Universal Declaration of Human Rights and Art 10 of the EU Charter of Fundamental Rights. Kokkinakis v Greece [1993] ECHR 20, (1994) 17 EHRR 397 para 31 quoted in the interesting article by Wicks, Religion, Law and Medicine: Legislating on Birth and Death in a Christian State (2009) 17 Med L Rev 410 at 411. Malette v Shulman 67 DLR 321 at 336 (1990), [1991] 2 Med LR 162. See Chapter 2: Consent & Capacity – Adults, para 2.40. See Wooley, Jehovah’s Witnesses in the emergency department: what are their rights?’, BMJ Emerg Med J 2005; 22:869–871 at bit.ly/29PvtiH (21 February 2005). [2011] 53 EHRR 4 at 136. For the UK government’s ‘statement on the situation of Jehovah’s Witnesses in the Russian Federation’ (12 March 2020), see bit.ly/3qki35u. 67 DLR 321 at 336 (1990), [1991] 2 Med LR 162. Note the comment of Butler Sloss LJ made before the advent of the Human Rights Act in Re T (Adult: Refusal of Treatment) [1992] 3 WLR 782 at 800: ‘I do not believe an English court would give damages in those particular

515

14.2  Religious Observance and Objections to Treatment

8 9

circumstances’, and see also Staughton LJ at 805. Now under the HRA, a claim for damages under Arts 8 and 9 would lie. In Malette v Shulman: The Requirement of Consent in Medical Emergencies [34 McGill Law Journal 1080] (1989) Norman Siebrasse noted that Can$20,000 (about Can$34,600 or £19,800) was awarded in effect ‘for saving the life of the plaintiff.’ Contending that the decision was ‘open to serious objections,’ Siebrasse argued that ‘As a matter of policy, we do not want doctors hesitating in the emergency room through fear of the law, and as a matter of justice, we must not punish someone for making a difficult and honest choice, especially when the “error” was to save a life.’ Janet O’Sullivan considers that such a claim for damages in a case such as Malette could only be made in trespass, and not negligence: The Meaning of ‘Damage’ in Pure Financial Loss Cases: Contract and Tort Collide (2012) Journal of Professional Negligence, 28(4), 248–265: ‘So the Jehovah’s Witness whose life is saved by an unwanted blood transfusion can sue in trespass but not negligence.’ Euthanasia, Death with Dignity and the Law (2001). New Law and Ethics in Mental Health Advance Directives: The Convention on the Rights of Persons with Disabilities and the Right to Choose (Explorations in Mental Health) (2012). See also in relation to Malette: Chapter 2: Consent & Capacity – Adults, para 2.40 and Chapter 17: Treatment of Suicidal Patients, para 17.46.

Power to treat under s 63 of the Mental Health Act 1983 14.3 There is a statutory power in the case of a detained patient to impose treatment without consent under s 63 of the Mental Health Act 1983 (‘MHA’), even if the patient has capacity to refuse that particular treatment.1 Treatment of a detained patient without consent is permitted only if the treatment is to alleviate or prevent a worsening of the patient’s mental disorder or one or more of its symptoms or manifestations.2 However, a decision taken under s 63 of the MHA to override a detained person’s religious wishes must be taken with the greatest of care and with significant hesitation and full consideration of the issues.3 In Nottinghamshire Healthcare NHS Trust v RC,4 after hearing detailed psychiatric testimony, Mostyn J ruled that a detained patient had the capacity to refuse the administration of blood products and that he had made a valid advance decision to refuse these. As the need for blood arose because of self-harm related to the patient’s mental disorder, there was a power under s 63 of the MHA to impose transfusion against the patient’s capacitous wishes, but the judge found there was no duty to do so. The judge held that it would be an abuse of the power for a responsible clinician to impose a blood transfusion on this detained patient with capacity who was refusing it on religious grounds. Mostyn J stated: ‘To impose a blood transfusion would be a denial of a most basic freedom. I therefore declare that … it is lawful for those responsible for the medical care of RC to withhold all and any treatment which is transfusion into him of blood or primary blood components (red cells, white cells, plasma or platelets) notwithstanding the existence of powers under section 63 MHA.’5 More recent consideration has been given to s 63 by Lieven J in JK v A Local Mental Health Board6 and A Healthcare and B NHS Trust v CC.7 She confirmed that the power to compulsorily treat a patient under s 63 of the MHA is conferred on the Responsible Clinician, and that ‘medical treatment’ for a mental disorder is defined by s 145(4) as treatment, ‘the purpose of which is to alleviate, or prevent a worsening of, the disorder or one or more of its symptoms or manifestations.’ She considered that whilst force feeding could

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Religious Observance and Objections to Treatment 14.4 be treatment within s 63, haemodialysis would not usually fall within its scope. Unusually, however, it did in A Healthcare and B NHS Trust v CC.8 In that case, it was argued that for s 63 to apply, the primary purpose of the treatment must be to treat the mental disorder. The court held that it was sufficient that a purpose of the proposed treatment was to alleviate a manifestation of the mental disorder. The dialysis in question fell within ss 63 and 145(4) as it was treating a manifestation of CC’s personality disorder: the need for the dialysis stemmed from his self-neglect, which was a consequence of his mental disorder. The fact that he would agree to dialysis when well further supported the notion that this refusal was a manifestation of his mental disorder. 1

2

3

4 5

6 7 8

See also Chapter 3: Deciding for Others – Adults, paras 3.4–3.8. In Nottinghamshire Healthcare NHS Trust v RC [2014] EWCOP 1317, [2014] Med LR 260 Mostyn J stated: ‘At first blush section 63 strikes one as an illiberal provision, given that it applies to all detained mentally ill patients who may well not lack capacity (as here). However, it can be well justified when one reflects that the treatment in question may be needed not merely for the protection of the patient but also for the prevention of harm to others, given the violent eruptions to which mental illness can give rise’ [14]. In B v Croydon HA [1995] PIQR P145, [1995] Fam 133, [1995] 2 WLR 294, the Court of Appeal determined that ‘force feeding’ by tube was ‘medical treatment’ within s 63 of the MHA and hence it was lawful for it to be undertaken on a detained patient who was suffering from a psychopathic disorder and was compulsorily detained under the Act. This was despite the fact that the first instance judge had held that the patient had capacity to reject such feeding. It should be noted that Hoffmann LJ, upon reviewing the evidence given at first instance, commented obiter that he found ‘it hard to accept that someone who acknowledges that in refusing food at the critical time she did not appreciate the extent to which she was hazarding her life, was crying inside for help but unable to break out of the routine of punishing herself, could be said to be capable of making a true choice as to whether or not to eat.’ [at P150]. See also An NHS Trust v A [2013] EWHC 2442 (COP), [2014] Fam 161. See also Avon and Wiltshire Mental Health Partnership v WA [2020] EWCOP 37. See also Chapter 13: Feeding, paras 13.17–13.20. See the interlocutory ruling in Nottinghamshire Healthcare NHS Trust [2014] EWHC 1136 (COP) in which Holman J refused to grant an interlocutory declaration without hearing representations when a psychiatrist was in a dilemma about whether to treat a detained person who refused treatment on religious grounds. [2014] EWCOP 1317, [2014] Med LR 260. Ibid, at para 42. Notably in that case the responsible clinician’s position was that she did not wish to enforce a blood transfusion against the patient’s wishes. The Trust sought a declaration under the inherent jurisdiction of the High Court that although there was arguably a power to enforce a blood transfusion under s 63 of the MHA even in the face of a capable refusal, there was no duty to do so. The responsible clinician was seeking the court’s view as to whether she had correctly struck the balance between the Art 9 right to freedom of religion and the Art 2 right to life of this detained patient (see also the earlier without notice application in this case at [2014] EWCOP 1136). [2019] EWHC 67 (Fam). [2020] EWHC 574 (Fam). Note that neither of these cases involved refusal on religious grounds, and see Chapter 3: Deciding for Others – Adults at para 3.8 for further discussion of s 63 of the MHA. Ibid.

Steps to be taken 14.4 It follows that in general the will of the capacitous adult patient refusing a blood transfusion must be respected, even where the result is likely to be fatal. However, the following steps need to be taken in the interests of both the patient and those providing medical care.

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14.5  Religious Observance and Objections to Treatment

Confirmation that the patient has the mental capacity to make the decision in question 14.5 The treating clinicians must consider whether the patient has capacity to make the decision at issue,1 which may be the very serious decision of refusing life-saving medical treatment, by reference to the principles set out in s 1 of the Mental Capacity Act 2005 (‘MCA’) and the test for incapacity set out in s 3.2 In the context of a refusal of treatment for religious reasons, various points require emphasis as set out below. 1 2

Or, earlier, had the capacity to make a valid advanced decision to refuse treatment – see Nottinghamshire Healthcare NHS Trust v RC [2014] EWCOP 1136. See Chapter 2: Consent & Capacity – Adults.

Ability to understand the information relevant to the decision 14.6 In order to assess whether the patient can ‘understand’ treatment information, it is necessary to ensure that the patient has been given all of the relevant information. It will first be necessary to identify and record what the assessor considers to be the information relevant to the decision which has to be taken. For example, the patient may believe that there are other equally effective forms of treatment to those being proposed. In those circumstances, it will be necessary to ensure that the patient is able to understand information on the effectiveness of alternatives as well as of the treatment being suggested by the clinician (usually, a blood transfusion).

Ability to use or weigh the information as part of the decision-making process 14.7 The patient needs only to be able to use or weigh the relevant information, not actually do so. As such, a total refusal of a patient to contemplate (or even receive information about) any other treatment alternative that does not accord with their religious beliefs should not be taken as evidence of a lack of capacity. Those who are able to do something may choose not to do it. It might be argued that a patient who firmly believes that they will die spiritually if they submit to the proposed treatment is incapable of using or weighing the information that it will save their life. However the temptation to do so should be resisted. A patient can be quite capable of understanding the medical opinion that the treatment proposed is life-saving and necessary, whilst disagreeing that submitting to that treatment would be in their own wider interests, given their religious beliefs. A fundamental religious belief may be so important that a person, by refusing to deviate from it, will also choose not to ‘weigh’ up relevant information about alternatives, but as Mostyn J noted in RC:1 ‘it would be an extreme example of the application of the law of unintended consequences were an iron tenet of an accepted religion to give rise to questions of capacity under the MCA.’2

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Religious Observance and Objections to Treatment 14.9 It follows that doctors must be slow to hold that a religious view held to the extent that a patient does not genuinely ‘weigh’ alternate treatment options means that that patient lacks the capacity to decide. 1 Nottinghamshire Healthcare NHS Trust v RC [2014] EWCOP 1317, [2014] Med LR 260 per Mostyn J at paras 33–35: ‘the only possible question relates to whether [the patient] is able to weigh information in the balance. … This aspect of the test of capacity must be applied very cautiously and carefully when religious beliefs are in play. In his essay John Stuart Mill speaks of the prohibition in Islam on the eating of pork. He describes how Muslims regard the practice with “unaffected disgust”; it is “an instinctive antipathy”. There can be no circumstances where a Muslim could “weigh” the merit of eating pork. It is simply beyond the pale. So too, it would appear, when it comes to Jehovah’s Witnesses and blood transfusions.’ 2 Ibid, para 34.

Advice 14.8 There is an obvious need both in the interests of the patient and those offering treatment that the options and their risks are clearly and calmly laid out for the patient to enable a balanced and informed judgment to be made, if that is the patient’s wish. This requires anticipation of the particular problems likely to be thrown up by the patient’s condition and the proposed treatment in the light of their known beliefs and discussion of these by all concerned. A doctor or other carer is clearly entitled, where appropriate, to give advice in strong and clear terms, but should not act in a way which might be interpreted as bringing undue influence to bear on the patient. Any decision taken by a patient whose will has been dominated by a doctor will be as invalid as if the undue influence had been exerted by a relative or friend. It is always important to ensure that the decision is a product of an exercise of the patient’s own free will.

Undue influence 14.9 Religious beliefs are held with differing strengths of conviction by different people. Some, faced with the prospect of death, will retreat from the apparent consequences of adhering to the tenets of their faith and change their views; others will find their stand strengthened.1 Whatever the position is in an individual case, it is important that those caring for the patient are satisfied that the patient’s own views and wishes are being communicated, and not those of relatives or other interested individuals or groups such as religious or community leaders or faith representatives. A patient’s decision arrived at under duress or undue influence is not a valid decision, and need not be followed by the attending doctors: ‘A special problem may arise if at the time the decision is made the patient has been subjected to the influence of some third party. This is by no means to say that the patient is not entitled to receive and indeed invite advice and assistance from others in reaching a decision, particularly members of the family. But the doctors have to consider whether the decision is really that of the patient. It is wholly acceptable that the patient should have been persuaded by others of the merits of such a decision and have decided accordingly. It matters not how strong the persuasion was, so long as it did not overbear the independence of the patient’s decision. The real question in each such case is “Does the patient really mean what he says or is he merely 519

14.9  Religious Observance and Objections to Treatment saying it for a quiet life, to satisfy someone else or because the advice and persuasion to which he has been subjected is such that he can no longer think and decide for himself?” In other words, “Is it a decision expressed in form only, not in reality?” ‘When considering the effect of outside influences, two aspects can be of crucial importance. First, the strength of will of the patient: one who is very tired, in pain, or depressed will be much less able to resist having his will overborne than one who is rested, free from pain, and cheerful. Second, the relationship of the “persuader” to the patient may be of crucial importance. The influence of parents on their children or of one spouse on the other can be, but is by no means necessarily, much stronger than would be the case in other relationships. Persuasion based upon religious belief can also be much more compelling and the fact that some arguments based upon religious beliefs are being deployed by someone in a very close relationship with the patient will give them added force and should alert the doctors to the possibility – no more – that the patient’s capacity or will to decide has been overborne. In other words the patient should really mean what he says.’2 It will be seen from the above passage that the clinicians must ask themselves the following questions: ●● ●●

●●

Has the patient’s expressed decision been influenced by some third party or parties? If so, who are these parties and what form did their influence take? Whatever the nature of the influence, did it overbear the independence of the patient or their own will? Factors to take into account in deciding this will include, but not be limited to, the nature of the relationship, that is, whether the relationship was one in which the third party might be expected to be dominant, such as parent and child, or priest and church member, and the physical and mental fitness of the patient to withstand pressure. Does the patient really mean what they are saying?

These are unlikely to be easy matters to consider, particularly in the case of urgently needed treatment where there may be little time in which to undertake a detailed social inquiry. The issue requires difficult value judgments to be made about the nature of relationships, the effect of behaviour which may not have been witnessed, or be part of a background history of which the carers have little or no knowledge. It is impossible to give more than general guidance about what to do without considering the facts of an individual case. Inevitably, there will be many cases where more than one view of the facts could reasonably be taken.3 Where there is evidence that the patient’s refusal has been influenced unduly by others, it would generally be prudent to seek the sanction of the court before accepting that refusal wherever that is possible.4 If a patient’s life may be lost even in the time it might take to make an urgent court application, and the treating clinicians are of the view, after whatever inquiry is possible, that the patient’s will has been overborne by undue influence, then the doctors will be in a difficult position. If they give the treatment in question, the patient may later complain that this was contrary to their capacitous refusal which had not, in fact, been vitiated 520

Religious Observance and Objections to Treatment 14.10 by undue influence. In this situation, doctors will be protected under s 5 of the MCA if they can show they took reasonable steps to establish whether the patient had capacity, reasonably believed they lacked the relevant capacity and reasonably believed the treatment was in the patient’s best interests. If this is not the case, it is unlikely that they would be able to rely on the doctrine of necessity.5 There is no parallel statutory provision allowing for reasonable belief that the patient is the subject of undue influence. Alternatively, a decision not to treat on the basis of a lack of consent may be criticised if the patient dies or suffers harm as a result, and it is established that the refusal to consent was invalid by reason of lack of capacity or undue influence. In a case of a conscious patient who has capacity but whose refusal to consent appears to be vitiated by undue influence, doctors may consider it preferable to give whatever treatment they consider necessary to save the patient’s life. In such cases doctors are advised to carefully record the evidential basis for believing there has been undue influence before proceeding with the treatment: the record should not be perceived as simply a post-hoc rationale. 1

2 3 4

5

The Journal of the American Medical Association reported a significantly higher death rate than a control population in those who graduated from Principia College in Elsah, III, a liberal arts college for Christian Scientists: Comparative longevity in a college cohort of Christian Scientists, 262 (12) Journal of the American Medical Association 1657–1658, bit.ly/ 3qjZVbZ. Re T (Adult: Refusal of Treatment) [1993] Fam 95 at 113 per Lord Donaldson of Lymington MR and see Chapter 1: Consent – General, para 1.32; Chapter 3: Deciding for Others – Adults, para 3.42. For example, Re T (Adult: Refusal of Treatment) [1993] Fam 95, where the Court of Appeal took a different view to the first-instance judge on whether there had been a vitiating influence. An application in respect of a capacitous patient who is unable to exercise capacity because of undue influence or other circumstances is made under the inherent jurisdiction of the High Court; see Chapter 3: Deciding for Others – Adults, paras 3.42–3.44 and Chapter 6: Going to Court, para 6.88. See Chapter 3: Deciding for Others – Adults, paras 3.10–3.11.

Scope of a decision to refuse treatment 14.10 The treating clinicians will have to decide precisely what circumstances the refusal of treatment such as a blood transfusion is intended by the patient to cover. Where the patient is still conscious and apparently capacitous, the matter can obviously be discussed with them. Where the patient has become unconscious when the need for treatment actually arises, the position is more difficult. The Jehovah’s Witness of many years’ standing who has calmly and carefully listened to the potential consequences of refusing this treatment and has maintained a refusal to contemplate a blood transfusion in any circumstances will be entitled to have their refusal respected.1 A doctor is not entitled to assume that once a particular need for a transfusion is perceived that the patient would not have maintained a refusal in those particular circumstances, if the advance refusal was clear and universal.2 On the other hand, a refusal reported to the doctor by members of the family, apparently based on some unspecified will of God, might more easily be interpreted as not necessarily covering the situation actually facing the doctor. Where doctors are uncertain as to whether an advance decision to refuse treatment is valid and applicable an application, 521

14.10  Religious Observance and Objections to Treatment should be made to the court to determine the issue.3 In the meantime, doctors will be able to provide treatment where it is necessary to preserve life or prevent a serious deterioration.4 1 2 3

4

See Chapters 2–4, and, for example, Newcastle upon Tyne Hospitals NHS Foundation Trust v LM [2014] EWHC 454 (COP) per Peter Jackson J at para 23. See Chapter 17: Treating of Suicidal Patients, paras 17.21 and 17.42. Re T (adult: refusal of treatment) [1993] Fam 95 at 114 per Lord Donaldson of Lymington MR; see para 14.14 below and see Chapter 2: Consent & Capacity – Adults: para 2.32–2.42. See Chapter 2: Consent & Capacity – Adults, paras 2.32–2.38. Such applications can be heard by the court on a very urgent basis (if necessary out of hours and without notice) see for example Nottinghamshire Healthcare NHS Trust v RC [2014] EWCOP 1136 and Re PW Jehovah’s Witness: Validity of Advance Decision [2021] EWCOP 52. MCA, s 26(5).

The role of relatives and close friends 14.11 Family members, spouses and friends have no power to authorise or veto treatment on behalf of an adult patient who has been rendered incapacitous of making their own decision.1 Nonetheless, anyone who has knowledge of the patient and their beliefs and wishes may have a role to play in providing information to the patient’s clinicians and carers and in assisting them in coming to an informed decision. Where a patient is suspected to have been subjected to undue influence, or where the intended scope of the decision under debate is uncertain, those with personal knowledge of the patient may be able to give information which will clarify the position. Doctors and others are then faced with the invidious task of assessing the reliability of the information they are given. They will face the challenge of deciding the extent to which their informant’s views have been coloured by their own personal convictions, rather than those of the patient, while ensuring that their own strong desire to provide life-saving treatment does not interfere with their own objective assessment of the situation. These are difficulties which few doctors have been trained to deal with. Therefore, in cases likely to provoke dispute, it is sensible to seek early legal advice. 1

In the absence of a lasting power of attorney (‘LPA’) or, less likely, a deputyship for welfare which gives power to do the same. See Chapter 3: Deciding for Others – Adults, para 3.9 and MCA, s 4(6) and (7), Appendix 1: Mental Capacity Act 2005.

Recording a decision taken against medical advice 14.12 The validity of a patient’s decision will not depend as a matter of law on whether or not it is recorded in writing unless it is an advance decision in relation to life-sustaining treatment.1 However, it is always sensible for any decision of a patient not to accept treatment advised by doctors to prevent death or a serious deterioration in health to be entered into the patient’s medical records, together with a statement, preferably signed by the patient, acknowledging that their decision is being made against medical advice received and may be prejudicial to health. If the patient refuses

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Religious Observance and Objections to Treatment 14.13 to sign such a statement, the refusal to accept the recommended treatment and a record of the potential consequences should be confirmed in writing by the responsible doctor and by some other professional, such as the ward manager, who has witnessed or participated in the advice given. In the past, some forms used by hospitals contained a disclaimer of liability. It may be thought that it is inappropriate to seek a patient’s agreement to a legal position at what is likely to be a stressful time in any event, and when they will probably not have access to legal or independent medical advice. If the patient has been advised and treated in accordance with good medical practice, and their refusal to accept advice is properly recorded, it is unlikely that any liability will arise,2 whether or not a disclaimer has been signed. If a disclaimer is to be asked for, it should be visibly separated: ‘from what really matters namely the declaration by the patient of his decision with a full appreciation of the possible consequences, the latter being expressed in the simplest possible terms and emphasised by a different and larger type face, by underlining, the employment of coloured print or otherwise.’3 Where a patient is refusing treatment on religious grounds and there is a chance that they may subsequently lose capacity if their condition deteriorates, it is advisable that an advance decision form is offered to the patient to complete so that the decision to refuse treatment can be recorded in a clear and binding way.4 1 2

3 4

MCA, s 24(5) and (6); see Appendix 1: Mental Capacity Act 2005. See Chapter 2: Consent & Capacity – Adults: paras 2.32–2.42. For advance decisions made before 1 October 2007, Mental Capacity Act 2005 (Transitional and Consequential Provisions) Order 2007, art 3. However, it is important those treating recalibrate their medical decision-making to take into account the fact that they have a patient who has refused, or who will go on to refuse, one aspect of their armoury of treatment. In Maher v Pennine Acute Hospitals NHS Trust [2012] JPI Law 25, [2011] 6 WLUK 562 it was held in the county court that the deceased’s refusal of a blood transfusion on the grounds of her religious belief was not unreasonable, so that the defendant NHS Trust, whose staff knew that she would not accept blood products, was liable for her death when it failed to operate in time to stop ongoing bleeding. Her death was therefore within the scope of the hospital’s liability for negligence. Per Lord Donaldson of Lymington MR in Re T (Adult: Refusal of Treatment) [1993] Fam 95 at 115. Note also the Unfair Contract Terms Act 1977, s 2(1) (liability for negligence occasioning death or personal injury cannot be excluded). Newcastle upon Tyne Hospitals NHS Foundation Trust v LM [2014] EWHC 454 (COP) at 12. See Chapter 2: Consent & Capacity– Adults, para 2.38.

C  INCAPACITOUS ADULTS General principle 14.13 If treatment is required by an adult who currently lacks the capacity to consent to or refuse it, the treatment may still be administered if the treatment is in the patient’s best interests.1 However, it may sometimes be easier to determine the patient’s lack of capacity than to decide where their best interests lie.2 Religious beliefs may be of great importance to an individual even where they are not associated with an established religion, and it cannot be assumed

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14.13  Religious Observance and Objections to Treatment that religious views borne of mental disorder will necessarily be accorded less weight than those that are not.3 The doctrinal basis for any religious objection need not be established to satisfy the court that the objection is a valid one. As Hayden J stated in NHS v VT and A: ‘in an increasingly secular society, where moral and religious relativism often prevail, it takes great courage to assert strong religious belief. Some time, but not a great deal, has been spent considering the roots of these views in the Islamic faith. Passages of the Quran have been cited in justification of them and reference has been made to a fatwa on the point. On the facts of this case, I believe these to be unnecessary. The views expressed and forcefully articulated by the family here, communicating a strong belief in the inviolability of life itself, have well known parallels in the JudeoChristian tradition, theologians will find support for them in both the Torah, as well as in the New Testament.’4 1 2

3

4

MCA, s 5(1), Appendix 1: Mental Capacity Act 2005 and see Chapter 3: Deciding for Others – Adults, para 3.13. In some cases what is at issue is whether to continue or to escalate life-preserving treatment, when the patient’s religious views may be relevant to the decision as to whether continuance or escalation will be in their best interests; see, for example, An NHS Trust v X [2005] EWCA Civ 1145 and [2006] Lloyd’s Rep Med 29, re the Islamic faith: NHS v VT and A [2013] EWHC B26 (Fam) [2013] 11 WLUK 326; re relevance of adherence to Sunni Muslim faith see St George’s Healthcare NHS Trust v P and Q [2015] EWCOP 42; re relevance of adherence to tenets of Catholic religion see University Hospital Plymouth NHS Trust v RS and Z [2020] EWCOP 70 and on appeal at Z v University Hospital Plymouth NHS Trust [2020] EWCA Civ 1772. See Wye Valley NHS Trust v Mr B [2015] EWCOP 60, [2015] 9 WLUK 521 in which Peter Jackson J declined to authorise a potentially life-saving amputation for a man with longstanding schizophrenia and auditory hallucinations of a religious nature that influenced his decision to refuse treatment. [2013] EWHC B26 (Fam), [2013] 11 WLUK 326 at para 21.

Advance decisions 14.14 A clinician faced with a suggestion by a relative or friend that an incapacitated patient in a life-threatening condition has previously expressed a capacitous determination not to have the one form of treatment they believe can save their life is in an extremely difficult position. If they disregard the suggestion and proceed to save the life of the patient, they may find they have condemned them to spiritual exile or even damnation and a fate far worse, in the patient’s eyes, than physical death. On the other hand, if they comply with a purported advance refusal of treatment and allow the patient to die, subsequent information may indicate that the suggestion was incorrect or that the patient’s decision had been the result of undue pressure from others. Inevitably, decisions about the validity of advance treatment decisions will arise in cases thought to require urgent treatment when there is little or no time for leisurely and thorough enquiries into the history of the decision that has been communicated. Whilst it has been suggested that doctors who have made honest mistakes in this field will be liable to actions for damages,1 in reality a court is unlikely to find against a doctor who has acted honestly and in accordance with good medical practice or if it does, liability will be for nominal

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Religious Observance and Objections to Treatment 14.15 damages only. Nonetheless, wherever possible, the most careful consideration needs to be given to the question of whether a patient has actually made an advance statement binding on clinicians and carers.2 1 2

Per Staughton LJ in Re T (Adult: Refusal of Treatment) [1993] Fam 95 at 122. See Chapter 2: Consent & Capacity – Adults: paras 2.32–2.42. Note that where an advance decision is invalid as a result of non-compliance with the statutory requirements, it should still be considered as an important factor in determining where the best interests of the patient lies. See Barnsley Hospital NHS Foundation Trust v MSP 2 [2020] EWCOP 26 and Chapter 3: Deciding for Others – Adults: para 3.21.

Reported oral advance decisions 14.15 It must be recognised that a patient who is an established member of a religion which is known to oppose certain forms of treatment, such as blood transfusions, may, but will not necessarily, have expressed an advance decision about that form of treatment. It would be erroneous without further enquiry to conclude from a simple report of a person belonging to a particular religion that they would adhere to all the tenets of that religion as expressed by the informant. After all, there is fierce debate within most religions about matters of doctrine and many give considerable scope for personal variations.1 In assessing the available evidence, the following points should be borne in mind: ●●

●●

●●

●●

1 2

Careful enquiry into the views expressed by the patient must be undertaken, where this is possible. An advance refusal to accept a transfusion should not be rejected merely because it is not evidenced in writing, unless the transfusion is necessary to sustain life (in which case formal validity requires the decision to be in writing), but it may be difficult to determine the extent to which the patient merely expressed a general view, or made a statement intended to be complied with in the future.2 Reliable evidence should be required of a firm and clearly expressed intention to decline the proposed type of treatment in the type of circumstances now prevailing. A general reluctance would not be sufficient.3 There should be evidence of an understanding of the potential consequences of declining the treatment in question before it is accepted that the patient had expressed a binding advance refusal of treatment. The doctors may need to be aware of the general teachings of a particular religion about the efficacy of alternative methods of treatment. Such beliefs cannot be disregarded by doctors merely because they believe them to be wrong. Doctors should consider whether the patient made the advance statement in the knowledge that the medical profession might disagree with the church’s view.4 Those making the assessment on this issue should also seek assurances that at the time the statement relied on was made, the patient had the capacity to make it and was not subjected to undue influence. For example, Christian Scientists, although advocating prayer rather than medical treatment as a means of curing illness, do not condemn members who choose medical treatment. Even where not evidenced in writing, and so not binding, any oral advance statements about life-sustaining treatment are still very relevant considerations in determining where the patient’s best interests lie under s 4 of the MCA. See Chapter 2: Consent & Capacity – Adults at paras 2.32–2.38.

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14.15  Religious Observance and Objections to Treatment 3 4

In cases in which there is uncertainty as to what was said or meant by the patient, the matter should be referred to the Court of Protection for a best interests decision, as even unclear statements may be evidence of the patient’s wishes and feelings on the issue. Jehovah’s Witnesses advocate a range of alternative therapies in the place of blood transfusions. In an appropriate case, the treating clinicians might wish to consider whether the patient had access to knowledge of the relative risks of the various treatments advocated.

The effect of uncertainty 14.16 What does the doctor do if left uncertain about any of these matters or if they simply have no information at all? If there is no evidence that a statement in advance or formal advance decision has been made, then the doctor should proceed as if there had been none. No liability will be incurred for carrying out treatment unless, at the time, the doctor is, or clearly ought to have been, aware that an advance decision exists which is valid and applicable to the treatment. If there are reasonable grounds to believe that an advance decision may exist then doctors should, if possible, make reasonable efforts to find out what that decision was.1 If, on the other hand, it is clear that such a statement was made, non-compliance with it cannot be excused on the ground that there is no information one way or the other about the existence of undue influence. To assume that there had been such a vitiating factor in the absence of evidence to the contrary would potentially open the practitioner to the charge of discriminating against an individual on the grounds of their religion. Before being entitled to rely on undue influence as a vitiating factor, the practitioner would have to be able to show evidence that it existed. Such evidence might exist where, for example, the statement was reported to the doctor by a parent or spouse who was a devout adherent of the religion in question after a long and private meeting with a patient in a weak condition.2 1 2

MCA Code of Practice, para 9.49. For example the facts of Re T (Adult: Refusal of Treatment) [1993] Fam 95, where it was remarked (at 111): ‘(g) The matrimonial history … suggests that Miss T’s mother is a deeply committed Jehovah’s Witness, who would regard her daughter’s eternal salvation as more important and more in her daughter’s best interests, than lengthening her terrestrial life span. (h) We do not know what the mother said to Miss T, because she has not chosen to tell the court, but it appears to be the fact that on the two occasions when Miss T raised the issue of blood transfusions, she did so suddenly and “out of the blue” without inquiry from the hospital staff and immediately following occasions when she had been alone with her mother.’

Written declarations 14.17 These issues may be easier to resolve if the patient has made a written declaration. The focus of the investigation can then be on the circumstances in which that statement came to be made. The same questions which are relevant in the case of an alleged oral advance decision are to be considered.1 Ideally, the document will have been made after the patient has participated in a full discussion of the issues with the attending doctors so that the clinicians are fully aware of the patient’s wishes, and have had the opportunity to give the patient the benefit of their advice.2 If a written declaration is produced by someone other than the patient, the doctors will need to be satisfied of its authenticity and that the patient had capacity at the time in which it was made. A copy should be kept in the patient’s 526

Religious Observance and Objections to Treatment 14.18 records. Those who have made advance decisions sometimes complain that the copies given to medical practitioners are frequently not kept in the records and are thus not made accessible to all who might need to know that an advance decision exists.2 Even written decisions are not binding without more and must still comply with all the other statutory requirements of a valid advanced decision under MCA. In Re PW (Jehovah’s Witness: Validity of Advance Decision)3 inquiries made by a doctor at the hospital had revealed the existence of a signed and witnessed advance decision made by the patient 20 years earlier that was held on a register of such decisions made by Jehovah’s Witnesses. That advance decision clearly included a decision to refuse blood or blood products even if the patient’s life was in danger. It had not been revoked and the patient remained a Jehovah’s Witness. However, Poole J determined that it was no longer valid on the grounds that the patient had acted inconsistently with it when she granted to her children – who she knew were hostile to the Jehovah’s Witnesses denomination – authority to make decisions about all medical treatment other than life-sustaining treatment, and did not mention to them any preference or requirement not to receive blood transfusion or blood products. 1 2 3

See para 14.15 above. See also Chapter 2: Consent & Capacity – Adults at paras 2.32–2.38. [2021] EWCOP 52.

Religious observance in incapacitous patients 14.18 In considering the observance of religious practices by an incapacitated person, a best interests analysis should be adopted. Experts on particular religions and doctrines may be required to provide the court with evidence on issues of religious and cultural practices which are not always settled1 or about which those of other religions (or no religion) may make unfounded assumptions. In IH (Observance of Muslim Practice),2 the court considered whether the observance of certain Islamic customs/practice was in P’s best interests whilst he was residing in a supported care home. The court considered whether P should fast during Ramadan and have his axillary and pubic hair trimmed in accordance with Islamic cultural and religious practice. The court held, inter alia, that as P did not have the capacity to understand the tenets of Islam, the benefits of adherence to the rituals did not apply to him. Accordingly, the court could not see the benefit to him and wished to protect him from the risk of additional stresses and/or the risk of harm.3 However, Mr Justice Cobb stated that: ‘Health or social care bodies who make the arrangements for the care for adults who lack capacity owe an obligation, so far as is reasonably practicable and in the interests of the individual, to create a care environment and routine which is supportive of the religion of P, and to facilitate P’s access to, or observance of religious custom and ritual. All forms of liturgy should, where practicable, be accessible to persons with disabilities. This view is consistent with Article 9 of the European Convention on Human Rights, and the right enjoyed by those who lack capacity as for those who have capacity, to freedom of religion and freedom, either alone or in community 527

14.18  Religious Observance and Objections to Treatment with others and in public or private, to manifest his religion or belief, in worship, teaching, practice and observance.’4 1

2 3 4

In IH (Observance of Muslim Practice) [2017] EWCOP 9, Cobb J heard evidence from a lecturer in Arabic and Islamic Studies in respect of the religious and cultural practices in Islam at the centre of the two applications in the case. As adherents of faith can differ on questions of faith, an expert can usefully assist the court in identifying tenets of faith and doctrine. Ibid. Ibid, para 47. Ibid, para 33.

Religious Ps – assumptions should not be made as to beliefs 14.19 There is no automatic presumption that just because a patient belongs to a particular religion or was a practising member of a particular faith that they would hold certain views on the withdrawal of treatment. In the case of Cambridge University Foundation NHS v AH,1 Hayden J was considering withdrawal of treatment from AH – described as ‘the most complex covid patient in the world.’ AH was religious, regularly complied with the Islamic duty of Zakat (that is, charitable giving), had completed Umrah (pilgrimage) and was fond of listening to Islamic prayers and du’as being recited. However, Hayden J considered it did not automatically follow that she would oppose the withdrawal of ventilation when faced with her current predicament, holding that: ‘Whilst I have identified AH’s religious and cultural views as integral to her character and personality, I am not prepared to infer that it would follow that those views would cause her to oppose withdrawal of ventilation in these circumstances. On these difficult end of life issues there are differing views within each of the major faiths, including within Islam. There is recognition that intervention which may have a powerful effect on the body may be antagonistic to the integral well-being of the patient. Once treatment is identified as both burdensome and futile and where death becomes inevitable, the prolongation of death is recognised as disproportionate. Some faiths perceive man as having been created in ‘the image of God’, from which human dignity is perceived to be established. It is therefore reasoned that the protraction of death is inimical to respect for God and thus, inconsistent with belief. The assumption that AH would have taken a particular theological position on her treatment plan solely because she is a Muslim, even an observant one, is not an assumption I am prepared to make. To do so risks subverting rather than protecting AH’s autonomy. I also note that there is a range of opinion, within this Muslim family, as to what is the right course to take.’2 Similarly, in University Hospital Plymouth NHS Trust v RS3 that a Catholic man was ‘religious’ and went to church at least once a month did not mean that he certainly adhered strictly to all aspects of the doctrine of his faith. As Cohen J put it ‘having religious beliefs does not answer the question in this case’ as to whether he would wish to be kept alive in a minimally conscious state. These cases highlight that assumptions cannot be made about a patient’s wishes simply because they are a member of a particular faith which has strong views on the sanctity of life. Differing views exist within particular religions and

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Religious Observance and Objections to Treatment 14.20 the focus must always be on ascertaining the particular patient’s wishes and feelings, in so far as these can be ascertained. 1

2 3

[2021] EWCOP 51. This case was subsequently successfully appealed (see Re AH [2021] EWCA 1768) and the decision set aside on the basis of a procedural shortcoming related to the judge’s having met with AH (see Chapter 6: Going to Court at para 6.28). However, a separate ground of appeal, related to the judge’s appreciation of the importance to AH of her religious and cultural views, was found to be unsustainable. The Court of Appeal unanimously held that the weight to be given to that factor was for the trial judge, and no criticism was made of his analysis of the impact of those views in relation to the withdrawal of medical treatment. Ibid, para 93. [2020] EWCOP 70.

D  CHILDREN General principle 14.20 With medical treatment for children, it is first important to consider the age of the child, and, if under 16, to ascertain whether the child is Gillick competent. If the child is Gillick competent, then that child is able to make their own decision and is able to consent to or refuse medical treatment on their own behalf, subject to the child’s decision being overridden by a court. If a child is not Gillick competent, then generally the consent of one parent (or whoever has parental responsibility) will be sufficient authority for the treatment of that child. However, although consent can be provided by one parent, where there is a fundamental dispute regarding a child’s best interests in a grave decision having profound or enduring consequences for the child (that does not require immediate action), the dispute should be referred to the court before any treatment is performed.1 The courts have frequently been faced with cases of conflict between parents with strong religious convictions against the provision of blood transfusions, and doctors and other carers who wish to give what they regard to be lifesaving treatment.2 The almost invariable outcome has been the authorisation by the court of the treatment as being in the best interests of the child. In effect, the court will do so where there is clear evidence that the child’s condition requires a blood transfusion without which treatment will be unsuccessful and harm will be suffered by the child as a result, whatever the parent’s views might be. As stated in Prince v Massachusetts: ‘Parents may be free to become martyrs themselves, but it does not follow that they are free in identical circumstances to make martyrs of their children before they have reached the age of full and legal discretion when they can make choices for themselves.’3 Consultation with the parents, nevertheless, will be encouraged, as will consideration of reasonable alternatives to blood transfusions.4 In any decision to override the views of one or both parents, adequate account must be taken of their rights to family life and to manifest their religion under Arts 8 and 9 of the European Convention on Human Rights.5 These rights have to be balanced against the welfare of the child and the equivalent rights of the other parent.6 1 See for example the case of proposed circumcision of a male child: Re J (Child’s Religious Upbringing and Circumcision) [2000] 1 FLR 571 at 577. Similarly where children are

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2 3 4 5 6

in Local Authority care the courts have for many years been acutely aware that some decisions, chiefly those related to serious medical treatment, are of such magnitude that it would be wrong for a local authority to use its power under s 33(3)(b) of the Children Act 1989 to override the wishes or views of a parent. See also the court’s refusal of permission to circumcise of a male child for religious reasons, despite both parents agreeing and giving their consent: P (Circumcision: Child in Care) [2021] EWHC 1616 (Fam). See generally Chapter 4: Deciding for Others – Children (generally), and Chapter 6: Going to Court, para 6.11–6.18. Re E (A Minor) [1992] 2 FCR 219; Re O (A Minor) (Medical Treatment) [1993] 2 FLR 149; Re R (A Minor) (Medical Treatment) [1993] 2 FLR 757; Re S (A Minor) (Refusal of Medical Treatment) [1995] 1 FCR 604. 321 US Reports 158 (1944): quoted by Ward J in Re E (A Minor) [1993] 1 FLR 386 at 394, and, as stated by Ward J at 394, the court ‘should be very slow to allow an infant to martyr himself’. See Chapter 4: Deciding for Others – Children, para 4.24. The form of order taken from Re R (A Minor) (Medical Treatment) [1993] 2 FLR 757. See para 14.2 above. See Re J (n1 above).

Best interests 14.21 When presented with an application that a child, whether or not Gillick competent, should undergo medical treatment to which their parent or guardian objects, the paramount consideration of a court is the best interests of that child. It is the role and duty of the court to exercise its own independent and objective judgment in making a best interests decision.1 The guiding principles remain those articulated by Munby LJ in Re G (Children), where he underlined that the ultimate test was the child’s best interests. He considered – in the context of an issue between parents about a child’s religious observance – that: ‘Some manifestations of religious practice may be regulated if contrary to a child’s welfare. Although a parent’s views and wishes as to the child’s religious upbringing are of great importance, and will always be seriously regarded by the court, just as the court will always pay great attention to the wishes of a child old enough to be able to express sensible views on the subject of religion, even if not old enough to take a mature decision, they will be given effect to by the court only if and so far as and in such manner as is in accordance with the child’s best interests. In matters of religion, as in all other aspects of a child’s upbringing, the interests of the child are the paramount consideration.’2 Religion is a factor to be weighed in the best interests assessment – but will not necessarily be determinative in cases concerning children. Doctors faced with the refusal of parents to consent to a blood transfusion to save a child patient’s life should act in the child’s best interests.3 If it is possible to apply to a court for an order approving the treatment, then this should be done. Judges of the family courts have immense experience and far greater powers than doctors to assess and determine the holistic best interests of children. The doctor faced with the immediacy of the need for a course of medical treatment is not always in the best position to obtain, let alone assess, all the relevant information. If, for example, the child might be ostracised by their parents or religious community if given blood, and there might be some chance of recovery with an alternative form of treatment, then a difficult judgment has to be made. Similarly, if only a very poor quality of life is likely to be enjoyed by the child even with the proposed treatment, then there might 530

Religious Observance and Objections to Treatment 14.21 be arguments for withholding it. Parental refusals seen as unreasonable by doctors will not always be rejected by the court.4 Where the treatment could go on to save a child’s life, this factor is likely to outweigh other considerations, including parental objections to treatment on religious grounds. In NHS Trust v A (A Child), the parents objected to treatment taking place on religious grounds.5 Nevertheless, the court still ordered that treatment should take place even though the proposed life-saving treatment was painful and carried only a 50% prospect of effecting a cure. The child’s welfare and best interests will be judged in their widest sense, involving social, emotional and psychological factors, and not just medical interests, such that on occasions the refusal of treatment on religious grounds, even of a minor, may prevail. In A Teaching Hospital NHS Trust v DV (A Child), the court accepted that to give a 17-year-old Jehovah’s Witness any blood products against his wishes would be damaging to his welfare and counterproductive.6 The consequences of overriding the parents’ and, where expressed, the child’s views must be taken into account. Where there is some medical opinion supporting doubts expressed by the parents as to the efficacy or risks of proposed treatment, greater weight may be given to the parental view than where medical opinion is unanimous. It must not be automatically assumed that the medical view is the correct one.7 Furthermore, a lack of involvement of patients and/or their families can itself be an issue of medical ethics. The absence of any prior consultation with – or participation of – family members when treatment decisions are made will generally not be acceptable. There should be guidance or protocols on patient/family participation produced by Trusts. Such guidance is likely to be especially useful in cases where parents are likely to raise religious objections to treatment.8 1

2 3 4 5

6 7

A Hospital NHS Trust v LP [2019] EWHC 2989 (Fam). In this case, the court sanctioned the use of blood products by a medical team for a critically ill 13 year old whose parents were Jehovah’s witnesses and therefore unable to consent to such treatment. In setting out the principles to be applied, the court held that the paramount consideration was P’s best interests, and the starting point was to consider the matter from P’s assumed point of view (para 14). See generally Chapter 4: Deciding for Others – Children. [2012] EWCA Civ 1233 at para 43. See Chapter 4: Deciding for Others – Children and in particular, para 4.21ff. See, in a different treatment context, Re T (A Minor) (Wardship: Medical Treatment) [1997] 1 WLR 242; and Chapter 4: Deciding for Others – Children, para 4.29–4.30. [2007] EWHC 1696 (Fam) in which it was accepted that without treatment the child (‘X’) would die by the age of one. The proposed painful treatment had a 50% chance of effecting a cure such that the child would have a normal life expectancy. The parents expressed a view that God would cure X and they wished to spare her further suffering of the painful treatment to preserve the quality of life she had for as long as possible. Holman J held that ‘a 50 per cent prospect of a full, normal life (even though infertile) when set against the certainty of death before the age of one … does in this case outweigh all other considerations and disadvantages.’ (para 70). [2021] EWHC 1037 (Fam). See para 14.1 n1 above. It may however be relevant that the need for administration of life saving blood products was not inevitable; there was simply a low risk that the need might arise during necessary surgery. In the USA a large number of states provide that a child is not to be deemed abused or neglected merely because they are receiving treatment by spiritual means alone in accordance with the tenets of a recognised religion (for example, Alabama Code: §13A-13–6: Endangering Children). This is felt to accord with the constitutional guarantee of protection of religious practice from intrusion by government. This prompted a challenge in Pediatrics, the official

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8

journal of the American Academy of Pediatrics (Religious Exemptions From Child Abuse Statutes, Vol 81, No 1: pp 169–171, January 1988). A further article in April 1998 concluded that when faith healing is used to the exclusion of medical treatment, ‘the number of preventable child fatalities and the associated suffering are substantial and warrant public concern. Existing laws may be inadequate to protect children from this form of medical neglect.’ (Child Fatalities From Religion-motivated Medical Neglect, Pediatrics, Vol 101, No 4 April 1998, pp 625–629). In other states, however, parents may be prosecuted for neglect and there have been several convictions for homicide in recent years. Great Ormond Street Hospital NHS Foundation Trust v MX, FC, X (A Child) [2020] EWHC 1958 (Fam).

Religious objections to withdrawal of treatment from a child 14.22 Where a child has suffered catastrophic brain damage or has another very serious life-limiting condition, an application may be brought by a Trust for a declaration that it is lawful to withdraw treatment from that child. Such applications have regularly been resisted by parents and family members on the basis of their religious beliefs. In recent years, the courts have seen cases where parents from all major religions (Christianity, Islam and Judaism) have sought to argue that their religious beliefs on the sanctity of life mean that life-sustaining treatment should continue to be provided to their child, and the Trust’s application therefore refused. The leading case in this area is now Fixsler which is discussed below in detail.1 However, prior to Fixsler came the case of Tafida Raqeeb in which the child’s parents sought to argue that withdrawal of treatment from their daughter (‘Tafida’) would contravene their Art 9 rights to religion and belief, and those of Tafida herself. 1

See para 14.24 below.

Raqeeb 14.23 Raqeeb v Barts NHS Foundation Trust1 concerned the removal of mechanical ventilation from Tafida, aged four. Her parents asserted that, as committed Muslims, the withdrawal of treatment went against their religious beliefs. Her parents also pointed to Tafida’s own growing understanding of – and commitment to – her faith. The Trust submitted that at the age of four, a child could have no real concept of – or understanding and commitment to – her faith such that it could be concluded that she would have opted for the preservation of life at all costs. MacDonald J held on other grounds that the NHS Trust or an Italian hospital would have to continue to provide Tafida with life-sustaining treatment, but he accepted: ‘the submission that within the religious and cultural tradition in which Tafida was being raised, and whilst not by itself sufficient to justify the continuation of life sustaining treatment on the basis of Art 9 or otherwise, a further benefit of continued life sustaining treatment is that it permits Tafida to remain alive in accordance with the tenets of the religion in which

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Religious Observance and Objections to Treatment 14.25 she was being raised and for which she had begun to demonstrate a basic affinity.’2 MacDonald J concluded by noting that religious beliefs could be of relevance to the best interests assessment underpinning these cases and held that: ‘Absent the fact of pain or the awareness of suffering, the answer to the objective best interests tests must be looked for in subjective or highly value laden ethical, moral or religious factors extrinsic to the child, such as futility (in its non-technical sense), dignity, the meaning of life and the principle of the sanctity of life, which factors mean different things to different people in a diverse, multicultural, multifaith society.’3 1 2 3

[2019] EWHC 2531. See Chapter 4: Deciding for Others – Children, para 4.30. Ibid, para 173. Ibid, para 191. At the time of writing, Tafida remains alive on a ventilator in Italy.

Fixsler 14.24 The leading case on religious objections to the withdrawal of treatment from children is now that of Alta Fixsler who, during birth, sustained a severe hypoxic ischaemic brain injury. Alta was resuscitated but continued to exhibit signs of catastrophic brain injury which doctors were agreed would inevitably result in her death. Alta was in receipt of intensive life sustaining treatment, including intubation and mechanical ventilation, which the Trust sought to withdraw. Alta had no prospect of recovery or improvement in her condition and was dependent on ventilation. Alta’s parents, who were devoutly religious practising Hasidic Jews, did not consent to the withdrawal of treatment and were strongly opposed to the Trust’s application. Legal proceedings were brought in the High Court,1 then the Court of Appeal2 and then the European Court of Human Rights.3 The proceedings considered in detail the parents’ contention that their religious beliefs, and those of Alta herself as someone born into the Jewish faith, meant that life-sustaining treatment should not be withdrawn. 1 2 3

Manchester University NHS Foundation Trust v Fixsler [2021] EWHC 1426 (Fam). See Chapter 4: Deciding for Others – Children, paras 4.22 and 4.28. [2021] EWCA Civ 1018. See Guardian, Alta Fixsler: European court says UK hospital can withdraw life support (4 Aug 2021): see bit.ly/Guardian-4-Aug-21.

High Court proceedings 14.25 In the High Court proceedings, the NHS Trust sought a declaration that it was not in Alta’s best interests to continue to receive life-sustaining treatment and a specific issue order that life-sustaining treatment should cease and a palliative regime be implemented.1 The parents opposed the declaration sought and argued that they should be able to take Alta to Israel for continued treatment and long-term ventilation at home. In opposing the Trust’s application, the parents contended that there was insufficient evidence to show that Alta was in considerable pain and distress,

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14.25  Religious Observance and Objections to Treatment and that their Jewish faith – including importantly beliefs on the sanctity of life – prohibited the withdrawal of treatment. In granting the Trust’s application, MacDonald J held that: (a)

(b)

Pain. On the balance of probabilities, Alta did experience pain and this was a significant burden to her. This was said to be the case notwithstanding the fact it was not possible to describe the nature of Alta’s experience of pain given her condition. Best interests. The court had to decide whether the withdrawal of life-sustaining treatment was in Alta’s best interests, and in doing so, started from Alta’s assumed point of view. This required an assessment of a wide range of factors, beyond the purely medical. In Alta’s case, she was not of an age, nor in a condition to have developed any understanding of the religion and culture into which she was born. Nor was she able to have knowledge of and to adopt her parents’ values, from which she could have extrapolated a position on the complex issues in the case. In so far as the court could place itself in Alta’s shoes and consider what her likely attitude to her situation would be, it was concluded that her likely attitude would be that continued treatment was not acceptable given her lack of awareness, the fact she had no prospect of improvement and the fact she was in pain. The medical interventions required to keep her alive, including mechanical ventilation and tube feeding, would place Alta under considerable burdens, without any prospect of improving her condition.

Furthermore, Arts 8 and 9, and the parents’ rights to freedom of thought, conscience and religion, whilst relevant to the court’s analysis, could be circumscribed where they conflicted with the child’s best interests. 1

[2021] EWHC 1426 (Fam).

14.26 MacDonald J’s judgment gives a very clear legal framework to be used when dealing with applications concerning the withdrawal of life-sustaining treatment of children. The court should consider the following factors in these applications: (a) (b) (c) (d) (e) (f)

the principle of the sanctity of life; the principle of self-determination (that is, the child’s wishes); the views and opinions of the child’s parents; the views and opinions of the doctors; the medical benefits and burdens of the proposed interventions; and the wider benefits and burdens.1

In considering these factors, whilst the principle of the sanctity of life is the starting point, it remains a rebuttable presumption. If the burdens of preserving life are sufficiently great, and the benefits and quality of that life sufficiently small, then that presumption can be overridden. In relation to Alta’s wishes, MacDonald J held that: ‘it is difficult if not impossible to attribute any views, including religious beliefs, to a very young child who has never had, nor will have, any cognitive understanding.’2

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Religious Observance and Objections to Treatment 14.27 Religion and cultural understanding becomes far more important in cases where the child has, at some point, gained an appreciation and understanding of the world around them and has an emerging concept of God, religion and faith. The overarching test is that of best interests, under which religious views fall to be considered, but are unlikely to be determinative. 1 2

[2021] EWHC 1426 (Fam) at paras 56–74. Ibid, para 85.

Court of Appeal and ECHR 14.27 In the Court of Appeal,1 Alta’s parents argued that the strong presumption in favour of the sanctity of life could only be outweighed by ‘particularly cogent evidence’ on the ‘unbearable’ nature of pain the child was suffering. This argument was rejected by the Court of Appeal where it was considered that evidence of such particular cogency was not required and was indeed difficult to obtain with regard to a child in Alta’s position. Rather than focusing on whether a child’s pain is intolerable or unbearable, a court faced with an application for withdrawal of treatment must balance all factors relevant to the child’s welfare. A significant degree of pain would clearly be a weighty factor in the balance. Alta’s parents also sought to overturn MacDonald J’s findings that it could not be assumed that Alta would share the religious beliefs of her parents. The Court of Appeal held that the High Court had been entitled to refuse to assume Alta would share her family’s beliefs given that she had never had, nor could she ever gain, an understanding or appreciation of the notions of religious belief or the cultural background into which she had been born. Accordingly, the element of substituted judgment (that is, where a court steps into P’s shoes to try and ascertain their likely point of view) had a very limited role to play in the best interests assessment in the case of a very young child who was born with such a severe brain injury. In relation to the wider benefits and burdens to be weighed and balanced, the Court of Appeal was clear that a child’s background, including the religion and culture into which they were born, must be considered by the court. It was held that: ‘The family’s religion and culture are fundamental aspects of this child’s background. The fact that she has been born into a devout religious family in which children are brought up to follow the tenets of their faith is plainly a highly relevant characteristic of hers. Under s1(3)(d), the court is required to have regard to the fact that Alta is from a devout Hasidic family which has very clear beliefs and practices by which they lead their lives and that, if she had sufficient understanding, she too would very probably choose to follow the tenets of the family religion. I agree with Mr Simblet that this is a central part of her identity … It is an unquestionably important factor to be taken into consideration. But it does not carry pre-eminent weight. It must be balanced against all the other relevant factors.’2 None of the factors were said to have a presumption of precedence and each had to be weighed and balanced by the court in all of the circumstances of the case, with the court making a final decision on what is in the child’s best interests.3 535

14.27  Religious Observance and Objections to Treatment The parents were refused permission to appeal to the Supreme Court. The ECtHR declared inadmissible the parents’ complaint that the decision breached their human rights.4 1 2 3 4

[2021] EWCA Civ 1018. Ibid, para 81. Ibid, para 82. See Guardian, Alta Fixsler: European court says UK hospital can withdraw life support, 4 August 2021: see bit.ly/Guardian-4-Aug-21.

Where should life support be withdrawn? 14.28 Further proceedings were brought in the High Court1 in October 2021 about where Alta’s life support should be withdrawn. Her parents argued that withdrawal should take place at their home, in line with their religious beliefs – there being specific rules and rituals around death pertaining to the Jewish faith.2 The Trust visited the home and concluded that access to the property would be difficult given Alta’s considerable medical equipment that needed to travel with her. The Trust also had concerns that high-quality nursing care could only be properly provided in a hospital or hospice. MacDonald J held that the religious obligations around death which the family wished to observe were important, but that where there was conflict between Arts 8 and 9 rights and a child’s best interests, it was the child’s best interests which must prevail.3 He went on to say: ‘the clear legal position is that where there is a conflict between a Convention right or rights and Alta’s best interests, it is her best interests that are determinative. Whilst religious obligations of the parents and wider Orthodox Jewish community are very important, they remain subordinate to Alta’s clinical and welfare needs prior to, during and following extubation.’4 MacDonald J therefore ordered that Alta’s life support was to be withdrawn in a specialist children’s hospice, where most – but not all – of the strict religious obligations could be observed and where Alta could receive expert medical care as her life support was withdrawn.5 The withdrawal of life-sustaining treatment was said to be a delicate and specialist procedure that needed to be handled appropriately to ensure that she suffered the least pain and discomfort possible. Finally in noting the parents’ likely disappointment with his decision, and the incompatibility of it with the tenets of the Jewish faith, MacDonald J held that: ‘However, it remains the position that, as would be the case were the court concerned with the religious principles observed by Christianity, Islam, Hinduism, Buddhism or any of the world’s established religions, it is not religious law that governs the decision in this case but the secular law of this jurisdiction. Within this context, the court has sought in the decision it has made to accommodate the religious beliefs and obligations of the parents

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Religious Observance and Objections to Treatment 14.30 insofar as it has been possible to do so within the context of Alta’s welfare being the court’s paramount consideration’.6 On 18 October 2021 Alta Fixsler died in a hospice, aged two years old. 1 2 3 4 5 6

[2021] EWHC 2664 (Fam). Ibid, para 38. Ibid, para 58. Ibid, para 62. Ibid, para 82. Ibid, para 87.

Conclusion on Fixsler 14.29 Overall, whilst the courts attempt to grapple with issues of religious belief sensitively, and to respect the Arts 8 and 9 rights of parents and children alike, these are qualified rights which have to give way to the guiding principle in this area of the law: treatment decisions must be made in the child’s best interests.

Ceiling of care cases 14.30 Religious objections have also been raised where clinicians seek to introduce a ‘ceiling of care’, that is, where a Trust asks a court to order that withholding treatment above a certain threshold, or withholding specific types of treatment, is lawful. In Great Ormond Street Hospital for Children NHS Foundation Trust v MBC1 Peel J granted declarations sought by the Trust to implement a ceiling of care for a 19-month-old child who was born with catastrophic brain damage with no prospect of cure. Her brain damage was not progressive but her life expectancy was said to be, at best, until her late teens or early adulthood. A declaration was sought by the Trust which would permit it to withhold invasive ventilation from the child, which was necessary during her periods of deterioration. The treating clinicians were all in agreement that continuing to provide the child with non-invasive ventilation and intubation remained clinically appropriate and in the child’s best interests. The child’s father was a practising Muslim and considered that he could not consent to the ceiling of care proposed by the Trust. On religion, he contended that the child (‘ABC’) would have been brought up in the Islamic faith and followed its tenets. He also contended that the parents’ Arts 8 and 9 rights should be taken into account in such applications. Peel J held that: ‘I also take into account the family’s religious views, which merit the utmost respect. ABC herself would have been raised in [the] Islamic faith, but at this stage of her life, and in this condition she does not hold any concept of religion. ABC would no doubt be influenced by her parents’ views, but she remains an individual in her own right.’2

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14.30  Religious Observance and Objections to Treatment In his overall conclusion Peel J held that the ceiling of care proposed was in ABC’s best interests. He considered that this was ‘consistent with human rights considerations to which I have referred, being necessary and proportionate.’3 This case is indicative of the same approach to religious beliefs, and Arts 8 and 9 rights, in such applications. The parents’ Art 9 rights (including for example, a religious belief that nothing should be done to hasten death) must be considered by a court, but as Art 9 is a qualified right, interference will often be seen by a court as necessary and proportionate, especially where a child is known to be in pain or the treatment proposed will confer little benefit. 1 2 3

[2021] EWHC 2574 (Fam). Ibid, para 55. Ibid, para 66.

The ‘Gillick competent’ child 14.31 As set out above, with a ‘non-Gillick competent’ child, the court has jurisdiction to make a best interests decision as to their medical treatment on their behalf.1 Where a child under the age of 16 is mature enough to understand the nature and effect of proposed medical treatment and the consequences of refusing it – in other words, is ‘Gillick competent’ – then that child will be competent in law to consent to treatment for themselves. The recent case of Bell v Tavistock & Portman NHS Foundation Trust has, however, highlighted the difficulties and complexities associated with the question of whether children are (as a matter of fact) Gillick competent to consent to serious medical treatment such as the prescription of puberty blockers and cross-sex hormones: ‘Clinicians will inevitably take great care before recommending treatment to a child and be astute to ensure that the consent obtained from both child and parents is properly informed by the advantages and disadvantages of the proposed course of treatment and in the light of evolving research and understanding of the implications and long-term consequences of such treatment. Great care is needed to ensure that the necessary consents are properly obtained. As Gillick itself made clear, clinicians will be alive to the possibility of regulatory or civil action where, in individual cases, the issue can be tested.’2 However, where a ‘Gillick-competent’ child refuses to give their consent to treatment, unlike an adult, their refusal will not necessarily be determinative and the court may override it where to do so is in the best interests of the child. Usually, this would only be where the refusal of treatment puts the child at serious risk.3 This was the approach taken in An NHS Trust v CX4 which concerned a Gillick competent and ‘plainly intelligent’ 14-year-old Jehovah’s witness who required a blood transfusion and was refusing this. Roberts J made declarations that it was in CX’s best interests – notwithstanding her finding that he was Gillick

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Religious Observance and Objections to Treatment 14.32 competent – to receive blood and blood products; accordingly, blood could be administered by the Trust without the consent of CX or his mother. In cases of refusal of serious medical treatment by ‘Gillick-competent’ children, it would therefore be unwise and inappropriate for the doctors to proceed to treatment on the basis of parental consent. An application should be made to the court exercising its inherent jurisdiction. Once the child reaches the age of 16, the test for capacity under MCA, rather than ‘Gillick competence’ will apply, and capacity is presumed; but the court still has jurisdiction to override the capacitous choice of a 16 or 17 year old.5 A binding advance decision to refuse medical treatment may be made only by a person aged 18 or over.6 Where a child is approaching the age of 18, their capacitous refusal may be determinative if to allow treatment would merely achieve a postponement for a short time of an inevitable death because the capacitous child, on reaching 18, would then exercise their absolute right to refuse the treatment.7 1

Re (JA) (A Minor) (Medical Treatment: Child diagnosed with HIV) [2014] EWHC 1135 (Fam) where it was held that a 14-year-old boy who was HIV positive was not Gillick competent to decide not to take anti-retroviral therapy medication – see [70] in particular. 2 Bell and Mrs A v Tavistock and Portman NHS Foundation Trust [2021] EWCA Civ 1363 at para 92. 3 See Re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11 and Re W (A Minor) (Medical Treatment: Courts Jurisdiction) [1993] Fam 64 as discussed by Sir James Munby in In the Matter of X (A Child) (No 2) [2021] EWHC 65 (Fam): ‘In the exercise of its inherent parens patriae or wardship jurisdiction, can in an appropriate case – typically thought of as being a case where the consequence of the child’s decision is likely to be serious risk to health or death – overrule the child’s decision, either, as the case may be, vetoing some procedure to which the child has consented or directing that the child should undergo some procedure to which the child is objecting.’ See also para 158. 4 [2019] EWHC 3033 (Fam). In this case, without the proposed treatment, there was a very significant risk that CX’s cancer would spread: para 25. Therefore, notwithstanding the fact that CX was Gillick competent, it was held to be in CX’s best interests that he undergo the proposed treatment and receive blood products [26]. See also In re W (A Minor) (Medical Treatment: Courts Jurisdiction) [1993] Fam 64 as discussed by Sir James Munby in In the Matter of X (A Child) (No. 2) [2021] EWHC 65 (Fam); and See Chapter 4: Deciding for Others – Children, para 4.6. 5 In the Matter of X (A child) (No. 2) [2021] EWHC 65 (Fam). See Chapter 4: Deciding for Others – Children, para 4.13. 6 MCA, s 24(1), see Appendix 1: Mental Capacity Act 2005. 7 Re P (A Minor) [2004] 2 FLR 1117 – see para 9 of the judgment. Re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11; Re W (A Minor) (Medical Treatment: Court’s Jurisdiction) [1993] Fam 64; As stated by Munby LJ in Re G (Children) [2012] EWCA Civ 1233 at para 81: ‘The point arises in its most obvious and extreme form where the issue before the court is whether to require a teenager to submit against their wishes to life-saving medical treatment. There, as Nolan LJ once observed [In Re W] … the duty of the court is to ensure so far as it can that children survive to attain the age of 18 at which an individual is free to do with his life what he wishes.’ See Chapter 4: Deciding for Others – Children, para 4.10.

Re X (No 2) – Rolling orders 14.32 In the matter of X (A Child) (No 2),1 the court was again faced with a 15 (soon to be 16) year old Jehovah’s witness refusing a blood transfusion. X suffered from sickle cell syndrome and required blood transfusions when she presented in crisis. She had had two such crises in 2020 – both of which

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14.32  Religious Observance and Objections to Treatment led to urgent applications to the court to permit blood transfusions.2 The Trust therefore sought a rolling two-year order to continue, until X turned 18 years old, authorising further top up blood transfusions in the event of further crises. At issue in the case was whether Gillick competent minors should be afforded the exclusive right to decide their own medical care in the same way as their peers aged 18 or over. Sir James Munby noted that it is ‘conventional wisdom’ that Gillick competent minors could have their decision-making overridden, in cases where there was a risk of serious injury or death: ‘… no child (that is, someone who has not reached the age of 18) has such an absolute right, and that even if the child is Gillick competent … or, having reached the age of 16, comes within the ambit of section 8 of the Family Law Reform Act 1969, the court, in the exercise of its inherent parens patriae or wardship jurisdiction, can in an appropriate case – typically thought of as being a case where the consequence of the child’s decision is likely to be serious risk to health or death – overrule the child’s decision, either, as the case may be, vetoing some procedure to which the child has consented or directing that the child should undergo some procedure to which the child is objecting.’3 X challenged this ‘conventional wisdom’ by arguing that societal and legal developments – including those reflected in the HRA 1998 and the MCA– should lead the courts to depart from the previous position and give effect to X’s autonomy. X also invited the court to look at the position in Canada in the case of AC v Manitoba4 which it was argued that a young person under 16, with the requisite capacity, was able to make a determinative decision, regardless of the likely outcome. Sir James Munby concluded that he did not agree with that reading of AC v Manitoba, stating that: ‘the Canadian Supreme Court in AC is not authority for the proposition that the decision of either a Gillick competent child or a child aged 16 or more is always, and without exceptions, determinative in relation to medical treatment. In the final analysis, as I read [Abella J’s] judgment, the court always has the last word.’5 Overall, the objective of the judge hearing these sorts of cases was said to be: ‘to bring the child to adulthood in such a way that the child is best equipped to deal with what kind of life they want to lead – what kind of person they want to be – and to give effect so far as practicable to their aspirations … to maximise the child’s opportunities in every sphere of life as they enter adulthood.’6 Therefore, it remains the position that a court can override the wishes of a Gillick competent child, in their best interests. This will usually only arise in cases concerning a risk of serious injury or death. On the specific issue in Re X of whether to grant the Trust the two-year rolling order sought, the court accepted that – whilst it had jurisdiction to make an anticipatory order in principle – it was not appropriate to grant such an order in this case. It was held that whether a particular treatment at a particular time was medically indicated is highly fact specific and fell to be considered by the 540

Religious Observance and Objections to Treatment 14.34 relevant treating clinician at the relevant time. Granting the rolling order ran the risk of ‘privileging “medical paternalism” over judicial protection.’7 1 2 3 4

5 6 7

[2021] EWHC 65 (Fam). See Chapter 4: Deciding for Others – Children, para 4.13. See Re X [2020] EWHC 1630 (Fam) and Re X [2020] EWHC 3003 (Fam)). n1 above, at para 2. AC v Manitoba (Director of Child and Family Services) [2009] SCC 30 considered the issue of a 14-year-old Jehovah’s Witness forced to undergo blood transfusion treatment for a lifethreatening condition. The Canadian Supreme Court there accepted the constitutionality of two legislative provisions: the first, which gave the courts a discretionary power to authorise medical treatment for adolescents under the age of 16 even against their wishes, and the second, which provided that the best interests of a child 16 or over would be most effectively promoted by allowing the child’s views to be determinative, unless it could be shown that the child lacked the maturity to understand the decision or appreciate its consequences. n1 above, at para 99. Ibid, paras 21, 164, 167–168. Ibid, para 99: citing the submission that ‘It runs the risk of privileging “medical paternalism” over judicial protection’, Sir James Munby commented ‘I can see the force of this point.’

E  PROCEDURAL ISSUES1 Anticipation 14.33 In any case of potential conflict between the opinion of clinicians and those of the patient or parent, it is obviously important that the issue is addressed as early as possible and in advance of the time in which the decision on medical treatment must be made. Practitioners should be alert to the possibility that patients and parents may hold particular views about certain types of treatment such as blood transfusions. Such issues should become apparent during careful history-taking and discussion of the patient’s condition. In practice, significant problems for NHS Trusts in such cases are created by procrastination over the taking of advice or obtaining objective evidence. Early consideration should also be given to using mediation, which can be very effective in defusing tensions often created by communication problems.2 1 2

See Chapter 6: Going to Court and Sandwell and West Birmingham Hospitals NHS Trust v AB [2014] EWCOP 23, per Theis J at 38–40. For an example of good communication with family and the court in an emergency application see High Court Order obtained for live-saving blood transfusion (5 May 2020) Lexology at bit.ly/2VolGZF. Gemma Brannigan and Adam Dickinson of Clyde & Co LLP helpfully set out there four ‘areas for learning for hospitals and doctors’ including: ‘2. The child’s wishes and feelings should be explored immediately, and their Gillick competence assessed and recorded. Take note of repeated religious phrases, but ask about their meaning. Focus on asking the child questions, and letting them speak, to assess their understanding. Have an age-appropriate discussion about the specific risks and likely outcomes, but do not avoid asking about the hardest outcomes … 3. Seek consent of the patient/parents to involve the hospital liaison committee to provide experienced support … 4. Notify your legal team as soon as there is a suggestion that consent may not be provided.’

Notice and consultation 14.34 Where there is a potential serious difference of opinion as to the correct course of action between the clinicians and the patient or parents,

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14.34  Religious Observance and Objections to Treatment consideration must be given to whether an application should be made to the court.1 The fact that such a step may be taken should usually be shared with the patient and (if the patient is a child) their parents, unless it is clearly not in the patient’s best interests that they should be informed. Those who disagree with the clinicians, whether the patient themselves or their parents, are entitled to the opportunity to obtain their own advice and second medical opinions. Where the patient is a child, it must be borne in mind that whatever the outcome, they will remain the parents of the child, and, in most cases, will retain responsibility for that child’s care. All possible steps should be taken to prevent parents from becoming alienated from the therapeutic process. In Jehovah’s Witness cases, it is essential, to give due respect for the religious beliefs of the patient or their parents, that administration of blood products is only carried out after clinicians have consulted with the patient or parents, and considered at every opportunity (i) all alternative forms of management and (ii) whether there is any alternative to the use of blood products which would be clinically appropriate. In some cases, the parents’ position is not that they actively oppose the treatment of their child, but they are simply unable to consent due to their religious views. Consultation and discussion may reach a stage where the parents will not dispute or object to the substance of the order if the pre-amble to the order reflects their position by using words such as: ‘AND UPON the Second and Third Respondents (“the child’s parents”) having had notice of this application and having indicated to the Applicant’s staff that they wish the First Respondent (‘the child’) to undergo treatment, including surgery and to have such follow-up after-care as advised by the Applicant’s clinical staff, but due to their conscientious belief as Jehovah’s Witnesses they cannot consent to the delivery of blood products to the child nor can they consent to the making of this Order.’ 1

For the procedures to be adopted, see Chapter 6: Going to Court.

Evidence 14.35 On issuing any application, it is necessary to set out the issues for the court and explain why the application is being made. Evidence should be obtained as quickly as possible. However, an application should not necessarily be delayed pending receipt of all the evidence. It is important to ensure that the Official Solicitor or CAFCASS and all appropriate parties are involved as quickly as possible. As a minimum, relevant evidence for a hearing will include medical evidence on the patient’s condition and the reasons why the disputed treatment is needed. In addition, there should be a full account of the religious or other objections to treatment, and any other information thought to be relevant to an assessment of the patient’s interests. It must be remembered that all relevant

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Religious Observance and Objections to Treatment 14.37 information should be put forward, whether or not it appears to assist the case to be advanced. These should not be regarded as adversarial proceedings, but an engagement of the court in the process of caring for a vulnerable individual.12 1 2

As discussed in Chapter 6: Going to Court, para 6.15. Consideration will have to be given to whether in a particular case any evidence – factual or expert – is required about the particular beliefs in issue.

Change of circumstance 14.36 Medical conditions frequently change unexpectedly. New medical techniques are regularly discovered or found to be more effective than previously thought. Authority from the court or from parents to proceed with a particular form of treatment should not be taken as exempting clinicians from continuing to review the condition of the patient and whether the chosen treatment remains in their best interests. Should there be a change of circumstances and it becomes desirable to vary the treatment plan, whoever gave the prevailing authority to treat must be approached again for the matter to be reconsidered, unless the authority explicitly covers the newly proposed treatment. An order could be sought which avoids the need to refer back to the court in many situations.1 1

See www.serjeantsinn.com/news-and-resources/medical-treatment-decisions/ for an example of such a specific issue order for the administration of blood products to a child.

F  CONCLUSION 14.37 The right of a capacitous adult to make medical treatment decisions for themselves on the basis of religious beliefs has long been recognised by the common law and is reinforced by the provisions of the MCA and the ECHR. Whenever such an issue arises, or may arise, the treating professionals should make an early and thorough assessment of the validity and scope of any refusal of treatment, taking legal advice where necessary. If the courts may be required to make a determination, an application should be made in good time, avoiding – wherever possible – the need to conduct a hasty hearing where the court cannot, for reasons of urgency or the patient’s condition, be presented with the best evidence. Where the patient is a child, the child’s parents have no absolute right to make medical treatment decisions on religious (or any other) grounds. Where parents refuse medical treatment on religious grounds, it will be necessary to balance the welfare of the child taking account of the child’s right to choose their religion, against the parents’ rights to family life and to manifest their religion. In the majority of cases, where life-saving measures are required, this exercise will result in the treatment in question being given to the child. This is done to protect that child’s life up to the point at which they attain the age and capacity to choose for themselves.

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14.37  Religious Observance and Objections to Treatment As with adult patients, it is important that the treating professionals give full consideration to the issues at an early stage, so that a timely application to court can be made where necessary.

For updating material and hyperlinks related to this chapter, see: www.serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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Chapter 15

Withdrawal and Withholding of Treatment

A B

C

D E F G H I

J K

Introduction 15.1 Prolonged disorders of consciousness (coma/VS/MCS)  15.2 VS: legal principles  15.8 The Bland decision  15.9 Extending Bland to other cases  15.12 The problem with ‘act’ and ‘omission’  15.15 Continuing treatment as an assault  15.16 European Convention on Human Rights  15.17 European Convention on Human Rights: the Lambert decision  15.23 MCS: legal principles  15.29 Withdrawal of treatment in MCS  15.30 Diagnosis of PVS and MCS 15.40 Current approach to diagnosis  15.44 ‘Permanent’ VS  15.49 Diagnosis of a minimally conscious state  15.51 Summary 15.52 Role of the family  15.53 Is an application to court required?  15.55 When court approval is required to withhold nutrition and hydration  15.56 Advance decisions/prior consent  15.58 Application to court  15.59 Confidentiality 15.60 Evidence 15.61 Emergency cases  15.68 Critique of the Frenchay approach  15.69 Doctors who disagree in principle  15.70 Children 15.71 Welfare of the child  15.72 Decision making in the absence of pain  15.75 Dignity 15.76 The procedural position in applications relating to children  15.81 Social media  15.82 Medical experts  15.83 Funding 15.84 Mediation 15.85 Conclusion 15.86 545

15.1  Withdrawal and Withholding of Treatment

A INTRODUCTION 15.1 Since the last edition of this book, there have been two significant developments in the law concerning withdrawal and withholding of treatment. First, in An NHS Trust v Y, O’Farrell J concluded that: ‘It is not mandatory to bring before the court the withdrawal of [Clinically Assisted Nutrition and Hydration (‘CANH’) from Mr Y who has a prolonged disorder of consciousness in circumstances where the clinical team and Mr Y’s family are agreed that it is not in his best interests that he continues to receive that treatment.’1 That decision was upheld by the Supreme Court. The result is that there is no requirement to bring an application before the court for withdrawal of treatment in respect of a patient who is in a prolonged disorder of consciousness, where there is agreement between the treating team and family that continued treatment is not in the patient’s best interests. The second development is the sudden increase in the number of heavily publicised cases concerning withdrawal of treatment from children.2 These are discussed in more detail below.3 Social media has played a large part in publicising these very sensitive cases and has the potential to provide greater transparency. Responsible and informed blogging has played a significant part in opening the workings of the court to greater scrutiny.4 Conversely, inaccurate and misleading reporting misinforms and is not in the best interests of either the vulnerable patient or the relatives who will also be under the most extreme pressure during such cases. 1 [2017] EWHC 2866 (QB) at para 1. 2 See in particular the cases of Charlie Gard and Alfie Evans, each of which resulted in numerous decisions before the domestic and international courts. See Yates & Gard v Great Ormond Street Hospital [2017] EWCA Civ 410; Gard v UK (2017) 65 EHRR SE9; Evans v Alder Hey Children’s NHS Foundation Trust [2018] EWHC 308 (Fam); and Evans v Alder Hey Children’s NHS Foundation Trust [2018] EWCA Civ 805. There are several other judgments resulting from these cases, but these are the most significant. See Chapter 4: Deciding for Others – Children at paras 4.26–4.31. 3 See para 15.71 below. 4 See for example the Open Justice Court of Protection Project blog founded by Celia Kitzinger and Gill Loomes-Quinn: see https://openjusticecourtofprotection.org/.

Prolonged disorders of consciousness (coma/VS/MCS) 15.2 Those who read the case law may be excused for confusion about references to the different ways in which a person may be suffering a prolonged disorder of consciousness (‘PDOC’). Anthony Bland was referred to as suffering from a ‘persistent vegetative state’ (‘PVS’)1 and that shorthand is still found in current authorities. In 2020 the Royal College of Physicians updated the advice contained in its 2013 publication ‘Prolonged Disorders of Consciousness, National Clinical Guidelines’. In the 2013 guidelines, the authors had noted: ‘In recent years, there has been a growing sense of discomfort in referring to patients as “vegetative”’.2 Despite that reservation, the authors agree that PDOC should include reference to patients who were in a coma, a vegetative state (VS) or a minimally

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Withdrawal and Withholding of Treatment  15.3 conscious state (MCS). That categorisation is continued (albeit with the same reservation) in the 2020 guidelines.3 1

Airedale NHS Trust v Bland [1993] AC 789, [1993] 2 WLR 316, [1993] 1 FLR 1026, HL [hereafter simply ‘Bland’]. 2 Royal College of Physicians, Prolonged Disorders of Consciousness, National Clinical Guidelines, Report of a working party of the Royal College of Physicians 2013, section 2. 3 Royal College of Physicians, Prolonged Disorders of Consciousness: National Clinical Guidelines, Report of a working party of the Royal College of Physicians 2020 (hereafter simply ‘2020 PDOC Guidelines’) at para 1.2.1.

15.3 Patients in a vegetative state (‘VS’) present a complex array of clinical, legal and ethical challenges to those who care for them.1 Patients in VS are in a state lacking all conscious awareness, with no prospect of recovery. Their ontological state is unclear: such patients are neither straightforwardly alive nor simply dead;2 it has been described as a ‘twilight zone of suspended animation where death commences while life, in some form, continues’.3 The state of wakefulness but absent awareness of VS can be distinguished from two other prolonged disorders of consciousness: coma (where there is absence of both wakefulness and awareness); and minimally conscious states (‘MCS’) where patients show wakefulness with minimal but definite evidence of consciousness despite profound cognitive impairment.4 It was estimated at the time of the Bland decision in 1993 that there were over 1,000 people who were in VS in Britain.5 Whether cared for in hospital or at home, there is an immense human cost in attending to these patients. The condition challenges our normal understanding of people and behaviour; a person in VS may move, make noises spontaneously and react to external stimuli, understandably leading others to interpret such reflexive movements as positive interaction.6 Family members are unable to mourn for a loved one who has departed: instead they have the enduring pain of watching a ‘living death’. There is also the significant burden and strain placed on those nursing such a patient. Further, there are substantial economic costs in caring for patients who have, by definition, no prospect of any meaningful human existence: ‘Given that there are limited resources available for medical care, is it right to devote money to sustaining the lives of those who are, and always will be, unaware of their own existence rather than to treating those who, in a real sense, can be benefited, e.g. those deprived of dialysis for want of resources?’7 Those in a VS will, by definition, lack capacity to make any decision regarding their treatment and welfare. Family members cannot consent to treatment on behalf of an unconscious adult: under English law no-one has the power to consent for an incapacitous adult patient save for circumstances in which a substituted decision-maker has been authorised.8 Thus, an unconscious patient must be treated in accordance with their best interests. The advent of the Mental Capacity Act 2005 (‘MCA’) has not altered this aspect of English common law. 2020 PDOC Guidelines (see para 15.2 n3): Section 1 describes PVS as ‘a state of wakefulness without awareness, in which there is a preserved capacity for spontaneous or stimulus-induced arousal, evidenced by sleep-wake cycles and a range of reflexive and spontaneous behaviours. VS is characterised by absence of behavioural evidence for self or environmental awareness.’ 2 Holland, Kitzinger and Kitzinger (2014) Death and treatment decisions and the permanent vegetative state: evidence from families and experts’ Medical Health Care and Philosophy (19 January 2014): see www.ncbi.nlm.nih.gov/pmc/articles/PMC4078237/. 3 Rasmussen v Fleming 154 Ariz 207, 211, 741 P 2d 674, 678 (1987). 1

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15.3  Withdrawal and Withholding of Treatment 4 The 2020 PDOC Guidelines distinguish PVS, MCS and coma from other pathologies such as ‘locked-in syndrome’, where both wakefulness and awareness remain intact, but brain stem pathology has disrupted voluntary control of movement leaving the sufferer unable to communicate other than by purposeful eye movement despite retaining their cognitive functioning. See pp 24, 41–42. 5 In Bland (see para 15.2 n5 above), decided in February 1993, Lord Browne-Wilkinson indicated at [1993] AC 879B that the court had been informed that the number of PVS patients was between 1,000 and 1,500. The British charity Headway stated that ‘There are normally just less than 100 people in the UK in PVS at any one time’: bit.ly/29QUVIw. A briefing paper for the Parliamentary Office of Science and Technology (‘POST’) No 489, March 2015 stated: ‘Because PDoC can result from numerous initial diagnoses, there are no reliable statistics on incidence or prevalence. Estimates (based on numbers of patients with PDoC in nursing homes in the UK) range from 4,000–16,000 patients in VS, with three times as many in MCS. The Prolonged Disorders of Consciousness Guidelines suggest that a registry of long-term follow up data is needed in order to understand and communicate prognosis and the benefit of interventions better, as well as to direct funding more effectively.’: https://researchbriefings. files.parliament.uk/documents/POST-PN-489/POST-PN-489.pdf. 6 2020 PDOC Guidelines at Section 3, which address support for families of those in VS/MCS. 7 Bland (see para 15.2 n5 above) at 879D. 8 See Chapter 3: Deciding for Others – Adults, para 3.9. At the time of writing there was no current case law dealing with whether a welfare lasting power of attorney (‘LPA’) with power to accept or refuse life-sustaining treatment can authorise withdrawal of clinically assisted nutrition and hydration. See also Chapter 2: Consent & Capacity – Adults, paras 2.32–2.42; and para 15.58 below on advance decisions/prior consent.

15.4 Once a patient has a diagnosis of VS, two major ethical problems face doctors and family members: the first is whether active treatment should be provided to save the patient in the event of an illness, and the second is whether clinically assisted nutrition and hydration (‘CANH’)1 should be withdrawn, thereby allowing the patient to die. In essence, both issues raise the same fundamental question: whether the VS patient’s life is so devoid of value that it should be allowed to end without the medical intervention afforded to other patients. Nonetheless, it is the second issue (the withdrawal of feeding and hydration) which has been the most controversial. As discussed elsewhere, feeding and hydration are not viewed in the same way as other medical interventions.2 Headlines such as ‘Doctors could be allowed to end the lives of patients with dementia or other degenerative diseases if they can’t feed themselves, as one [doctor] brands medics’ proposals “the most chilling thing she’s ever heard”’3 have followed hearings where it has been declared lawful to withdraw clinically assisted nutrition and hydration. Pro-Life pressure groups have attacked in strong terms attempts at withdrawal of feeding. Mike Willis, chairman of the Pro-Life Alliance, has stated: ‘As for this idea of considering hydration as a treatment, it’s a basic human need and you wouldn’t deny it to a dog.’4 Janet Allen of ‘SOS-NHS Patients in Danger’ has stated: ‘Giving water is not treatment – that’s not a medicine, it’s the stuff of life.’5 Lord Mustill in Bland noted that it was a ‘striking fact’ that in 20 out of the 39 American states which had legislated in favour of ‘living wills’ the legislation specifically excluded termination of life by the withdrawal of nourishment and hydration.6 Opposition to withdrawal of treatment in these cases stems from the absolute view that all human life is sacred and that it is therefore morally wrong to allow a VS patient to die no matter how meaningless their existence or how 548

Withdrawal and Withholding of Treatment  15.5 bleak the prospect of recovery.7 Doctors, it is argued, should not therefore be allowed to withdraw the basic necessities of life – food and water – from a person merely for the emotional convenience of others or in order to release resources to others. 1

Previously known as ‘artificial nutrition and hydration’ or ‘ANH’ (which was the term used in the Bland decision). Clinically assisted nutrition and hydration includes intravenous feeding, intravenous or sub-cutaneous fluids, hydration and feeding by nasogastric (‘NG’) tube, and by percutaneous endoscopic gastrostomy (‘PEG’) and radiologically inserted gastrostomy (‘RIG’) tubes through the abdominal wall. It excludes helping patients with oral intake, such as by spoon-feeding. 2 Despite the acceptance in Bland that artificial feeding and hydration are forms of medical treatment: [1993] AC 789 at 857 and 870. 3 Daily Mail, 13 August 2018, see bit.ly/Mail-13-Aug-18. This article was published in response to proposals from the British Medical Association following from the decision in An NHS Trust v Y [2018] UKSC 46, [2019] AC 978 (to which see para 15.59 below). A member of the group Care Not Killing condemned the proposals as ‘euthanasia by stealth’. 4 BBC News, 23 June 1999: bbc.in/2a3bbml. 5 Ibid. 6 Bland [1993] AC 789 at 890F. 7 See North West London Clinical Commissioning Group v GU [2021] EWCOP 59 where the Vice President of the Court of Protection, Hayden J, described the position of the patient’s son, who felt unable to agree to withdrawal of nutrition and hydration as ‘an instinctive, human and visceral reaction to what is perceived to be depriving food and water from a human being.’

15.5 This position finds ostensible support in the wording of Art 2 of the European Convention on Human Rights (‘ECHR’).1 However, courts in the UK and elsewhere, including Strasbourg, have rejected an absolutist position even in the face of challenges under the Human Rights Act 19982 and have determined that not all human life requires saving at all costs. Bland established that the withdrawal of clinically assisted nutrition and hydration was lawful in the case of a patient diagnosed as being in a permanent vegetative state.3 The underlying ethics of the Bland decision have been attacked by religious groups, pro-life campaigners and others. Similar cases in other countries have attracted even greater controversy. For example, in the US a lengthy series of court hearings concerning Terri Schiavo4 was followed by remarkable last ditch legislative steps in the US Congress5 to prevent withdrawal of her feeding tube. The medical position and issues surrounding the case are well summarised by Dr T Quill6 who pleaded that: ‘future courts and legislative bodies [should] put aside all the special interests and distractions and listen carefully to the patient’s voice as expressed through family members and close friends. This voice is what counts the most, and in the Terri Schiavo case, it was largely drowned out by a very loud, self-interested public debate.’7 In Italy the Supreme Court permitted the withdrawal of feeding from Eluana Englaro (a 38-year-old woman in PVS) in compliance with her parents’ wishes. This prompted a national debate which ended in a political storm with Prime Minister Silvio Berlusconi accusing his President of being party to ‘killing’ Eluana by rejecting an emergency decree intended to force doctors to resume feeding.8 In France, a bitter legal dispute about whether or not clinically assisted nutrition and hydration should be withdrawn from Vincent Lambert (a 38-year-old nurse who had been in VS since a road accident in 2008) raged for six years from 2013: on one side, his wife Rachel and six of his siblings, along with his medical team, argued that he should be allowed to die; and on the other, his 549

15.5  Withdrawal and Withholding of Treatment parents and two other siblings, supported by a vociferous ‘Vincent Must Live’ campaign, sought to keep him alive.9 The case led to a landmark ruling from the European Court of Human Rights, in June 2015, that withdrawal would not violate Art 2 of the ECHR, but the dispute persisted. After the ruling, doctors suspended the decision to withdraw feeding amidst public outcry, saying, ‘The conditions of calm and security necessary to continue this procedure are not in place, neither for Vincent Lambert nor his medical team’.10 Vincent Lambert eventually died in July 2019 after doctors removed his life support, following exhaustion of legal remedies from France’s highest court. By the time of his death, he had been in what was then termed a PVS for a total of 11 years.11 1 See para 15.17 below. 2 An NHS Trust ‘A’ v Mrs ‘M’ and An NHS Trust ‘B’ v Mrs ‘H’ [2001] 1All ER 801, [2001] 1 FCR 406: see para 15.17 below. 3 Bland in fact refers to ‘persistent vegetative state’: however, since the judgment, the 2020 PDOC Guidelines (see para 15.3 n1 above and discussed below) have been issued, advocating the terminology ‘permanent vegetative state’ for patients such as Anthony Bland where there is no prospect of recovery from the vegetative state. 4 As the respondent argued in written submissions to the US Supreme Court on 24 March 2005, the ‘massive and intensive judicial (and now legislative) scrutiny of a patient’s medical condition and intent is unprecedented in the annals of American jurisprudence’. It involved eight years of litigation ‘including a week-long trial … fourteen appeals, and innumerable motions, petitions, and hearings in the Florida courts … five suits in federal district court … the enactment of unconstitutional state legislation to overturn the judgment of the state courts, which was struck down by the Florida Supreme Court …’ and four visits to the US Supreme Court. (Respondent Michael Schiavo’s Opposition to Application for An Injunction, 24 March 2005 pp 1–2). Post-dating this summary and after the US Supreme Court refused to hear the emergency appeal on 24 March 2005: on 25 March 2005 a federal judge rejected a second appeal and a federal appeals court refused to overturn that decision on appeal; on 26 March 2005 a Florida state court rejected a further appeal; on 27 March 2005 the Florida Supreme Court rejected an emergency appeal; on 30 March a federal appeals court rejected a petition to have the feeding tube inserted and, finally the US Supreme Court refused to intervene for a sixth time. Terri Schiavo died the following day, 31 March 2005. http://news.bbc.co.uk/1/hi/ world/americas/4358877.stm (31 March 2005). 5 Legislation was initiated and passed unopposed in the Senate by a voice vote on Sunday 20 March 2005 to allow the federal courts to intervene in preventing the withdrawal of Terri Schiavo’s feeding tube. After summoning sufficient House members back from the Easter recess to provide a quorum, an identical bill was then passed in the House of Representatives at 12.42am on Monday 21 March 2005. President Bush was awakened shortly afterwards at his ranch in Crawford, Texas to sign the bill into law which he did while standing in a hallway at around 1.08am. In a speech later that day, President Bush declared: ‘… in extraordinary circumstances like this, it is wisest to always err on the side of life.’ http://nyti.ms/29tatxU (21 March 2005) and http://nyti.ms/29IVNPU (22 March 2005). 6 Terri Schiavo – A Tragedy Compounded N Engl J Med (April 2005); 352(16): 1630. 7 Ibid, 1633. 8 The Times, Berlusconi accuses president of “killing” coma woman Eluana Englaro (10 February 2009). 9 The Independent, Vincent Lambert case: France gripped by ‘right to die’ case of tetraplegic former nurse and an attempt to “kidnap him from his hospital bed” (27 July 2015) has a helpful summary of the history of the case: http://ind.pn/29tzTun, and see para 13.22 below. 10 The Guardian, French doctors refuse to rule on fate of brain damaged man (23 July 2015), see bit.ly/Guardian-23-July-15. 11 BBC, Vincent Lambert: Frenchman at centre of end-of-life debate dies (11 July 2019), www. bbc.co.uk/news/world-europe-48911187.

15.6 Nevertheless, whilst the ethics were controversial, uncertainty of outcome of proceedings in the UK was for some time only found in those cases where the condition did not match the established and recognised criteria for a PVS diagnosis. Following Bland, if a person was found to be in PVS, it was unlikely that any court would conclude that it was in that person’s best interests to continue treatment. 550

Withdrawal and Withholding of Treatment  15.7 Other prolonged disorders of consciousness where there is some, although extremely limited, awareness, are categorised as minimally conscious states (‘MCS’) and, as discussed further below, the existence of some consciousness formerly mandated a different approach in law from those in PVS. If a person was in MCS, then the issue of continued clinically assisted nutrition and hydration was to be considered in the same way as all other medical treatment: by assessing the balance of the person’s best interests pursuant to s 4 of the MCA. In recent years the courts have placed increasing emphasis upon patient autonomy and s 4(6) of the MCA which requires any decision maker to take into account material including the patient’s previously expressed wishes and feelings, any written statement and more generally, their beliefs and values, including their religious beliefs (to the extent that these views are ascertainable).1 This has – rightly in our view – resulted in the court undertaking a detailed analysis of those matters so far as they affected each patient, therefore allowing a specific and informed value judgment to be made on the basis of the facts in each case, rather than that judgment reflecting the inherent and unconscious bias (whichever way it might lean) of the decision maker in the case. This will often involve consideration of a ‘balance sheet’ analysis, although an individual’s diagnosis and prognosis will be a very significant factor weighing in the balance.2 1 See Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, [2014] AC 591; Briggs v Briggs (No 2) [2016] EWCOP 53, [2017] 4 WLR 37. 2 See, for example, M v Mrs N and Bury Clinical Commissioning Group and A Care Provider [2015] EWCOP 76, (2015) 18 CCL Rep 603, [2016] COPLR 88 (19 November 2015) at para 47. In addition, whilst in the context of children (further to which see para 15.71 below), Poole J provides a helpful summary of the legal developments relating to a ‘balance sheet’ approach in cases of PVS: Guys’ and St Thomas’ Children’s NHS Foundation Trust v Knight [2021] EWHC 25 (Fam) at paras 25–29. See also see Chapter 3: Deciding for others – Adults, paras 3.10 and 3.15.

15.7 Given the probability that continuing treatment will not be in the best interests of a patient with VS, it is little surprise that parties arguing in favour of prolonging treatment have often focussed on the reliability of the diagnosis of VS in each case. Both diagnostic error and the potential for change in a patient’s condition present challenges for even experienced clinicians. Historically there was concern even among the medical profession in relation to misdiagnosis of VS.1 The optics of a patient in what was previously thought to be a persistent VS enjoying a ‘miraculous’ recovery and suddenly regaining the ability to carry on life to a high level of functioning are startling and understandably have made for eye-catching headlines. In 2007, The Sunday Times ran an article with the by-line: ‘Trapped inside their bodies, apparently switched off to the world, but still alive: they are the undead. Or so we thought. Forty per cent of patients in a “vegetative state” are misdiagnosed.’2 Headlines such as this make for distressing reading for any close relative of a patient in VS. The reality is that the diagnostic tools, training and experience available to skilled assessors have improved over the last ten years and where a diagnosis of VS has been made by a skilled assessor, it will be difficult successfully to challenge that conclusion. Nevertheless, given the justified concern about mis-diagnosis, before proceeding to a court hearing it is essential that all rehabilitative measures have been exhausted before an assessment is carried out. For that reason alone, applications for withdrawal of treatment 551

15.7  Withdrawal and Withholding of Treatment in a patient in PVS should not be brought before the court precipitously. The diagnosis must be confirmed by those experienced in diagnosing VS and MCS, combining clinical assessment with the use of standardised testing. The current Guidelines on Prolonged Disorders of Consciousness from the Royal College of Physicians (‘the Prolonged Disorders of Consciousness Guidelines’) state that: ‘evaluation is required by a multidisciplinary team of clinicians who are expert in assessing cognition, communication and motor function in the context of [prolonged disorders of consciousness]. Key disciplines include physiotherapy, occupational therapy, speech and language therapy, neuropsychology, nursing and rehabilitation medicine. However diagnosis and management requires an interdisciplinary team-based approach, and should not depend upon isolated clinicians, whatever their profession and level of individual expertise.’3 The use of formal structured assessment with validated tools is recommended (and must now be considered mandatory for court applications), with diagnosis not being based on a single assessment but by reviewing observations over an adequate period of time. Furthermore, the Prolonged Disorders of Consciousness Guidelines advise that formal structured assessment such as a SMART (Sensory Modality Assessment and Rehabilitation Technique) assessment,4 or detailed clinical evaluation with the addition of CRS-R and/ or WHIM assessment,5 is essential when making decisions about the potential withdrawal of active medical treatment.6 Despite the advances and improved reliability of the testing described above, it is of little assistance in children because at the time of writing, SMART and WHIM testing had not been approved for use in children. This is one of the main reasons that so many of the heavily contested cases regarding withdrawal of treatment concern children. Where the court does not have the security of a VS diagnosis there is more room for argument as to the certainty of the diagnosis and therefore as to best interests. In preparing any case concerning withdrawal or withholding of treatment it is incumbent upon the parties to do their utmost to provide accurate and upto-date evidence on these issues to assist the court. The burden of doing so is even greater where, for whatever reason, time is short. It cannot be right for the judge in these cases to be left to carry out a detailed fact-finding assessment without the parties having first provided the best available evidence of the patient’s wishes and beliefs – so far as they are ascertainable – in advance of the hearing. Where time is short and investigations have been limited, that can be made clear to the court but efforts to obtain the best possible evidence from the patient’s treating team, family or friends are the most obvious starting point. 1 For example, Andrews et al, Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit (1996) British Medical Journal 313 and Gill-Thwaites, Lotteries, loopholes and luck: Misdiagnosis in the vegetative state patient (2006) Brain Injury, Dec; 20(13–14), 1321–1328. 2 Times, 9 December 2007, see bit.ly/Times-9-Dec-07 3 PDOC Guidelines, Section 2: Assessment, diagnosis and monitoring at pp 41, 43. 4 Gill-Thwaites article (see n1 above). 5 WHIM (‘Wessex Head Injury Matrix’) and CRS-R (‘Coma Recovery Scale – Revised’). It is important to understand the differences between the different types of evaluation. See in particular the advice of the RCP’s Guideline Development Group who warned at p 47 of the 2020 PDOC: ‘The term “SMART assessment” is sometimes used as a generic short-hand term for formal structured assessment of PDOC (rather as the trade name “Hoover” is commonly

552

Withdrawal and Withholding of Treatment  15.9 used instead of “vacuum cleaner"). This has caused confusion – for example the courts have sometimes ordered “a SMART assessment” in the erroneous belief that application of the SMART tool itself (see below) is an essential requirement of these guidelines. For clarity the GDG would like to emphasise that, although useful in some circumstances, the SMART tool is just one of the structured tools available and is not an essential part of evaluation. For the most part a sound assessment may be achieved though detailed clinical evaluation with the addition of the CRS-R and/or WHIM.’ 6 See Cwm Taf University v F [2015] EWHC 2533 (Fam) where Newton J suggests at para 16 that a SMART assessment is essential if an application to the court is being made.

B  VS: LEGAL PRINCIPLES 15.8 The law does not consider VS patients to be dead: irreversible loss of consciousness by itself does not equate with death of the individual; death occurs when there is no longer any brain stem function.1 In VS patients the brain stem is still functioning. The legal duty of a doctor is to ensure that those in their care receive adequate care and nourishment. In usual circumstances a failure by a doctor to provide adequate feeding and hydration resulting in a patient’s death would result in a manslaughter charge. Thus, what is the legal rationale for allowing withdrawal of clinically assisted nutrition and hydration from VS patients? 1

Re A [1992] 3 Med LR 303; see also An NHS Trust ‘A’ v Mrs ‘M’ and An NHS Trust ‘B’ v Mrs ‘H’ [2001] 1 All ER 801, [2001] 1 FCR 406. For a full discussion of the complexities of this determination see Chapter 18: The End of Life and in particular, paras 18.13–18.14. These issues were the subject of discussion in these more recent decisions. See Hayden J in Re A (A Child) [2015] EWHC 443 (Fam), [2016] 1 FLR 241; Francis J in Oxford University Hospitals Trust v AB [2019] EWHC 3516 (Fam); and Sir Andrew McFarlane (P) in Re M (Declaration of Death of Child) [2020] EWCA Civ 164, [2020] 4 WLR 52.

The Bland decision 15.9 The legal position following Bland1 was that it was lawful to withdraw clinically assisted nutrition and hydration from a person who was in a persistent VS. Prior to the decision in An NHS Trust v Y,2 it was considered highly likely that the court would grant a declaration allowing the withdrawal of feeding/hydration if the court determined that the VS diagnosis was correct. There has more recently been a realisation that there is a spectrum of states of disordered consciousness. This has brought with it a shift away from slavishly attempting to distinguish between a diagnosis of VS and one of MCS – assessing the level of a patient’s awareness – and a move towards assessing whether withdrawal of feeding/hydration is in a patient’s best interests in all cases. Nevertheless, it is worthwhile exploring the reasoning behind the Bland decision because it casts light on how English law reconciles the withdrawal of life-saving treatment with its opposition to euthanasia, and provides the context as to how the law has developed over the past 20 years. Because the judges in Bland were referring to a ‘PVS’ and this term appears in the authority, we adopt that shorthand in the analysis below. The House of Lords concluded that the sanctity of life is not absolute: there is no absolute duty to prolong life. The principle underlying that determination is the view that an unconscious or incapacitous person should not have to be subjected to what a rational and conscious person would reject. Thus, a rational 553

15.9  Withdrawal and Withholding of Treatment person, it is argued, would not wish to be kept alive in a vegetative state as ‘a person who has no conscious being at all’.3 1

Re A [1992] 3 Med LR 303; see also An NHS Trust ‘A’ v Mrs ‘M’ and An NHS Trust ‘B’ v Mrs ‘H’ [2001] 1 All ER 801, [2001] 1 FCR 406. 2 [2018] UKSC 46, [2019] AC 978. See also In re M (Incapacitated Person: Withdrawal of Treatment) [2017] EWCOP 19, [2018] 1 WLR 465. 3 Sir Thomas Bingham MR in Frenchay Healthcare NHS Trust v S [1994] 1 WLR 601, [1994] 2 All ER 403, [1994] 1 FLR 485.

15.10 However, in reaching this ‘rational’ conclusion it was necessary for the Law Lords to address how such action can be taken without being construed as euthanasia. The issue is simple: a person in PVS is not dead and has all the rights of other human beings. Consequently, taking their life would be a homicide.1 If a child is starved to death by their parents, that would amount to a homicide: the parents are under a duty to feed the child, and their omission to feed them renders them liable for the consequences. If a doctor administered a lethal injection to a PVS patient, again that would be homicide. Thus the legal dilemma here is: why is the failure to continue to feed a PVS patient not a homicide? The House of Lords, in determining why withdrawal of feeding does not constitute homicide, found it necessary to distinguish between an act and an omission: ‘To act is to cross the Rubicon which runs between on the one hand the care of the living patient and on the other hand euthanasia.’2 An omission to act cannot be an offence unless one is under a duty to act. Those caring for a patient are usually under a duty to act: they have a duty to give food and drink to those in their care. If they do not do so and the patient dies, they have committed a homicide (usually manslaughter but if the requisite intent were proved, murder).3 However, a medical practitioner is no longer under a duty to feed or hydrate a patient when it is established that no benefit at all would be conferred by continuance; that is, it is not in the patient’s best interests. This best interests test was often formulated as ‘acting towards the patient in accordance with a responsible body of medical opinion’: the Bolam4 test: ‘… on an application to the court for a declaration that the discontinuance of medical care will be lawful, the court’s only concern will be to be satisfied that the doctor’s decision to discontinue is in accordance with a respectable body of medical opinion and that it is reasonable.’5 This would lead to the conclusion that the critical question is not what the court considers is in the patient’s best interest but whether the doctor’s belief – that the medical care should be withdrawn – is reasonable and bona fide. Given this rationale, it could be argued that a more precise way of formulating the duty is: a medical practitioner is no longer under a duty to feed or hydrate when it is established that a responsible body of medical opinion (a Bolam responsible body) supports the determination that no benefit at all would be conferred by treatment being continued. It is suggested that this is not the intended result of Bland. As stated by the then Master of the Rolls in Frenchay: ‘It is, I think, important that there should not be a belief that what the doctor says is the patient’s best interest is the patient’s best interest. For my part I 554

Withdrawal and Withholding of Treatment  15.11 would certainly reserve to the court the ultimate power and duty to review the doctor’s decision in the light of all the facts.’6 1 The term ‘homicide’ is used here to connote the unlawful killing of another whether in law it comprises ‘murder’ or ‘manslaughter’. 2 Lord Goff at [1993] AC 865. The reasoning is similar to that of the ECtHR in Lambert, see para 15.23 below. 3 R v Gibbins and Proctor (1918) 13 Cr App R 134, cited in Bland. 4 Bolam v Friern Hospital Management Committee [1957] 1 WLR 582. 5 Per Lord Browne-Wilkinson at [1993] AC 883. See also A Hospital v SW and A PCT [2007] EWHC 425 (Fam), [2007] LS Law Medical 273. Sir Mark Potter P held that a medical practitioner was under no duty to treat such a patient where there was a large body of informed responsible medical opinion that continuance would be of no benefit. 6 Frenchay Healthcare NHS Trust v S [1994] 1 WLR 601, [1994] 2 All ER 403.

15.11 Further, not all the Law Lords approached best interests on the Bolam basis. For example, Lord Mustill approached best interests not through assessing the question of whether objectively the doctor’s determination is reasonable and bona fide but by assessing the question of what (objectively) was in Anthony Bland’s best interests. Thus a ‘real best interests’ test was applied: Lord Mustill determined that the withdrawal of feeding was objectively the best option for Anthony Bland rather than merely being an option supported by a body of medical opinion. This is akin to the position in child cases in which the court determines what is the best option for the child, rather than merely declaring that a given course of treatment is lawful because it is Bolam reasonable. The advent of the MCA means that this must be the approach which is now adopted for adults: a true best interests assessment is required.1 If there is no longer a duty to continue to feed or hydrate a patient, then no criminal or civil liability results from the omission to continue feeding and hydrating. Applied to a PVS patient, this produces the following results. Initially, it is appropriate to treat a vegetative patient to stabilise the patient’s condition while an assessment of their condition and prognosis is completed. The basis for treating such an unconscious patient who can neither give nor withhold consent is that the practitioner is acting in the patient’s best interests. At first best interests usually requires that the patient be treated and kept alive by clinically assisted feeding and hydration whilst their diagnosis is established and any rehabilitation or other interventions that may lead to their recovery are attempted. While there may be a potential benefit in initial treatment, once it is established that there is no prospect of recovery for the vegetative patient and that continuing treatment is futile, the position may change. Existence in a vegetative state with no prospect of recovery is arguably not a benefit. Lord Mustill commented: ‘The continued treatment of Anthony Bland can no longer serve to maintain that combination of manifold characteristics which we call a personality.’ Lord Goff stated: ‘It is the futility of the treatment which justifies its termination.’2 Further, if the diagnosis is correct, there will be no detrimental consequences for the PVS patient in the withdrawal of feeding or hydration: they have no consciousness, is not sensate and is not losing any opportunity for recovery. 555

15.11  Withdrawal and Withholding of Treatment Such an analysis of the PVS patient’s best interests dictates that there is no longer a duty to feed and hydrate the patient. Any subsequent failure to feed or hydrate legally is not an act; it is merely an omission. Once the diagnosis is determined, given that those caring are no longer under any duty to feed or hydrate the patient, that omission does not constitute homicide. The operative cause of the patient’s death will be the original accident or condition that caused the vegetative state in the first place. The underlying rationale is: why should artificial feeding and hydration be different from other forms of medical treatment? Lord Goff stated: ‘Indeed, the function of artificial feeding in the case of Anthony, by means of a nasogastric tube, is to provide a form of life support analogous to that provided by a ventilator which artificially breathes air in and out of the lungs of a patient incapable of breathing normally, thereby enabling oxygen to reach the bloodstream.’3 1 See Chapter 3: Deciding for Others – Adults. 2 [1993] AC 789 per Lord Mustill at 899 and Lord Goff at 869. 3 Ibid at 870.

Extending Bland to other cases 15.12 Given the concerns expressed about the withdrawal of feeding being ‘backdoor euthanasia’, the Law Lords in Bland were keen to emphasise that Anthony Bland’s was an exceptional case: for example, Lord BrowneWilkinson noted that it was: ‘an extreme case where it can be overwhelmingly proved that the patient is and will remain insensate: he neither feels pain from treatment nor will feel pain in dying and has no prospect of any medical care improving his condition.’1 Lord Mustill stressed that he was not saying that he would support discontinuance of feeding in a patient with ‘glimmerings of awareness.’2 Although it has taken a considerable amount of time, the law has since evolved to take account of the fact that some people would not wish to be kept alive in a condition of minimal consciousness and that their wishes, feelings and values should be respected even where they have not made a clear advance decision to that effect.3 Nonetheless, it appears that some doctors and carers have erroneously relied on Bland to withdraw normal oral feeding in patients who cannot be described as in PVS or even ‘near-PVS’. In January 1999, The Times ran an exposé into allegations that doctors caring for elderly patients were ‘giving nature a helping hand’ by withholding intravenous drips from dehydrated patients and allowing them to die. It was reported that by January 1999 the number of known cases where this had occurred was 60.4 Thus the Bland decision itself is attacked as having opened the door to euthanasia: ‘[The reasoning in Bland was] sophistry. Bland wasn’t dying. And feeding wasn’t treatment, though it might require invasive procedures – after all, what is the illness being treated? Hunger? Living? And so now – surprise –

556

Withdrawal and Withholding of Treatment  15.13 patients being fed orally are also being refused food and water: inevitable once the Bland judges made it legal to starve patients to death.’5 The Bland decision expressly does not warrant or support ‘mercy killing’ of patients. Families, clinicians and Trusts must be alert to attempts by individuals to extend withdrawal of feeding and hydration to circumstances well beyond those of patients in disordered states of consciousness. The GMC’s guidance is clear: ‘All patients are entitled to food and drink of adequate quantity and quality and to the help they need to eat and drink … You must keep the nutrition and hydration status of your patients under review. You should be satisfied that nutrition and hydration are being provided in a way that meets your patients’ needs, and that if necessary patients are being given adequate help to enable them to eat and drink.’6 1 2

[1993] AC 789 at 885. Ibid, 899. A further 23 years passed before a judge authorised withdrawal of artificial nutrition and hydration from a clinically stable patient in a minimally conscious state: see M v Mrs N and Bury Clinical Commissioning Group and A Care Provider [2015] EWCOP 76, (2015) 18 CCL Rep 603, [2016] COPLR 88 (19 November 2015). 3 See, eg obiter comments In Re Briggs [2017] EWCA Civ 1169, [2018] 2 WLR 152 at [108] as per King LJ; In re M (Incapacitated Person: Withdrawal of Treatment) [2017] EWCOP 19, [2018] 1 WLR 465. 4 Also note the investigation in the Daily Telegraph in November/December 1999. 5 Ibid. 6 The General Medical Council’s guidance, Treatment and care towards the end of life: Good practice in decision-making (2010) www.gmc-uk.org/guidance at p 52, para 109. See also Chapter 18: The End of Life.

15.13 Regardless of the criticisms, the law is now clear: where the court is satisfied that a justifiable and firm diagnosis of irreversible PVS has been made, feeding and hydration can be withdrawn, so long as withdrawal is found to be in the patient’s best interests.1 It remains to be seen whether, in a case where clinical evaluation has confirmed that the VS is persistent, the court will consider that previous beliefs, wishes and feelings indicating a desire to prolong life, will amount to a persisting ‘interest’ that should be balanced against the withdrawal of nutrition and hydration.2 Some guidance may be derived, however, from two cases. In Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust v TG & OG,3 Cohen J considered the case of a woman who was not in established PVS but had been in a vegetative state for two months following a subarachnoid haemorrhage. There was no chance of a meaningful recovery; at most, there was a small chance of recovery to a state of minimal consciousness. The judge held that it was in her best interests to continue to be ventilated. Relying on evidence from TG’s family, he took into account her Catholic faith and belief in God: that the continuation of life ‘enabled her life to progress and be ended in accordance with the will of God’. It also permitted ‘the possibility, faint though it may be, of some improvement in her state and ‘provides the ability for her to play a part in her family as she and they would wish, even though she would be unaware of it.’ The judge did though acknowledge that different considerations might apply six months in the future.

557

15.13  Withdrawal and Withholding of Treatment 1 See also B NHS Trust v J [2006] EWHC 3152 (Fam), [2007] 94 BMLR 15 in which Sir Mark Potter P granted a declaration that it was in the best interests of a patient, who was in PVS, to undergo a course of drug treatment over a period of three days to determine whether any beneficial effect resulted, before making any further declaration as to the lawfulness of discontinuing medical treatment. 2 There have been recent cases in which P’s previous (probable) wishes and feelings that they would not wish to continue with life-sustaining treatment have been considered as one factor to be weighed within the best interests analysis. See, eg Re SS [2018] EWCOP 40, in which evidence from P’s husband suggested that P would not have wanted to live with severe disabilities and would have found being in PVS distressing. The evidence from P’s brother was less clear but on balance, suggested that P did not want to be in PVS. Withdrawal of CANH was ultimately decided to be in P’s best interests. See also A Clinical Commissioning Group v P [2019] EWCOP 18. 3 [2019] EWCOP 21.

15.14 In the highly-publicised case of Raqeeb v Barts NHS Foundation Trust1 Mr Justice MacDonald began his judgment movingly by expressly balancing the futility of medical treatment against the moral imperatives of religious faith and the value of familial love: ‘The dilemma presented by cases concerning, as this case does, the withdrawal of life sustaining treatment from a child rests on the fact that they address what many see as an appalling present, but a present that for many also remains sanctified morally or as an article of religious faith because life subsists. For the treating doctors involved in such cases, seen through the prism of medical best interests life is at best a barely wakeful shadow burdened by futile medical treatment or, at worst, mere oblivion. For parents, seen through the prism of abiding love and fierce devotion and the amplifying effect on those emotions of the flattering voice of hope, life is still a faded jewel that has not yet been robbed away from the body and one that may yet regain its lustre.’2 The consensus of the medical opinion was that distinguishing between a vegetative state and a minimally conscious one was artificial. Five-year-old Tafeeda Raqeeb had sustained devastating brain damage and was, at best, minimally conscious. The judge considered the assumed views of Tafeeda herself were the ‘starting point’ but noted the obvious difficulties in a judge placing themselves in the shoes of a small child.3 He took into account the Islamic religious and cultural tradition in which she was raised, which ‘whilst not by itself sufficient to justify the continuation of life sustaining treatment on the basis of Art 9 or otherwise’, was a further benefit of continued life.4 The judge’s decision that it was in Tafeeda’s best interests to continue receiving life-sustaining treatment and to be offered treatment in Italy was ‘a very finely balanced one’.5 Returning to first principles, the MCA requires the court to consider all the relevant circumstances and whilst recent case law repeatedly emphasises the importance of considering the patient’s wishes, feelings, values and beliefs, the courts have consistently stressed that they are not automatically determinative (and nor is the weight to be placed upon them subject to any automatic discount, notwithstanding the patient’s lack of capacity). 1 2 3 4 5

[2019] EWHC 2531 (Admin), [2020] 1 CMLR 28. Ibid, para 1. Ibid, paras 122 and 166. Ibid, para 173. Ibid, para 185. And see Chapter 2: Deciding for Others – Children at para 4.30.

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Withdrawal and Withholding of Treatment  15.16

The problem with ‘act’ and ‘omission’ 15.15 The withdrawal of feeding is deemed legally not to be an act. The distinction has not been free from criticism. Hoffmann LJ in Bland considered that it: ‘leads to barren arguments over whether the withdrawal of equipment from the body is a positive act or an omission to keep it in place.’1 An example illustrates the problem: it would be an ‘act’ which hastened death if an outsider came in and removed the patient’s feeding tube, but paradoxically it is an ‘omission’ when done by a doctor who used to have a duty to the patient to provide nutrition and hydration through the tube. The outsider has no duty. The doctor now has no duty. How then can the act of pulling out the tube be an ‘omission’ in one person’s hands and an ‘act’ in another’s? The explanation given by Lord Goff was that the outsider is actively stopping the medical treatment: ‘I also agree that the doctor’s conduct is to be differentiated from that of, for example, an interloper who maliciously switches off a life support machine because, although the interloper may perform exactly the same act as the doctor who discontinues life support, his doing so constitutes interference with the life-prolonging treatment then being administered by the doctor. Accordingly, whereas the doctor, in discontinuing life support, is simply allowing his patient to die of his pre-existing condition, the interloper is actively intervening to stop the doctor from prolonging the patient’s life, and such conduct cannot possibly be categorised as an omission.’2 An alternative might be that the outsider would be under a duty not to interfere with the patient’s medical treatment. Thus, the removal of the feeding tube by the outsider would comprise criminal homicide because they were under a duty not to intervene. 1 2

[1993] AC 789 at 831, CA. Ibid, 866, HL.

Continuing treatment as an assault 15.16 Theoretical complications arise from the Law Lords’ determination that it is no longer in a PVS patient’s best interests to continue feeding and hydration. As a PVS patient is unconscious and incapacitous, the only lawful basis on which treatment in any form can be provided is if it is in their best interests. Given that feeding and hydration have been determined to be no longer in the patient’s best interests, then any continued feeding and hydration is an assault.1 Given the medical debate concerning the nature of the PVS condition and the difficulties of diagnosis, the problem can partially be addressed by allowing that there must be a period of time when it is in the patient’s best interests for their condition, prognosis and long-term interests to be subjected to the most rigorous assessment. It might also be argued that there will be a period during which it would be Bolam reasonable either to continue feeding or to cease feeding a patient. In such a situation no liability can flow from feeding during that time.2 However, the problem will still arise if the vegetative state continues 559

15.16  Withdrawal and Withholding of Treatment for so long that no body of responsible medical opinion would consider that it was reasonable to continue feeding/hydration.3 On the basis of the Bland analysis, the continued feeding and hydration at that stage would amount to an assault on the patient. This will largely be a theoretical issue: the PVS patient will not sue, although it is conceivable that a concerned relative could mount an action in the patient’s name. After their death, it might be open to their estate to sue for the additional loss of amenity caused by the assault. The problem could, however, arise in two other cases: if the family of a patient in PVS is frustrated by continuing delay in making an application for withdrawal; and where there is a dispute either between treating clinicians and the patient’s family or within the family itself as to whether clinically assisted nutrition and hydration should be withdrawn. In such a case, the possibility that continuing to treat a patient in PVS is an assault may arise as an argument in favour of withdrawal once a definitive diagnosis has been established. The court has repeatedly provided guidance on those cases where applications should be made to determine whether continued treatment is in the patient’s best interests.4 In 2020, the Court of Protection issued specific guidance on the issue.5 In North West London Clinical Commissioning Group v GU6 Hayden J was concerned with a case where the patient had been in a PDOC and unaware of his surroundings for seven years before the matter came before him. The submissions on behalf of the Official Solicitor were that there had been ‘an inordinate and inexcusable delay’ in addressing the issue of GU’s best interests.7 The judge agreed with the view expressed that this was an ‘unconscionable period’ (before moving on to consider in detail the issue of dignity in such cases). 1

2

3

4

5 6 7

Bland [1993] AC 789 per Lord Browne-Wilkinson at 883: ‘If there comes a stage where the responsible doctor comes to the reasonable conclusion (which accords with the views of a responsible body of medical opinion) that further continuance of an intrusive life support system is not in the best interests of the patient, he can no longer lawfully continue that life support system: to do so would constitute the crime of battery and the tort of trespass to the person.’ This may be particularly pertinent if feeding takes place in contravention of an individual’s properly constituted Advance Decision. Although responsibility was not explicitly investigated, see the comments of Hayden J in NHS Cumbria CCG v Rushton [2018] EWCOP 41 at paras 19–26. Hayden J stressed the importance of giving these advanced decisions ‘the utmost care, attention and scrutiny’, in the context of a PVS patient who had a PEG inserted despite an Advance Decision which clearly indicated that such action was against their wishes and feelings. See further para 15.58 below. It has been held by the High Court that a doctor is under no duty to continue to treat a PVS patient where there was a large body of informed, responsible medical opinion that continuance (of treatment) would be of no benefit, as would be the case where the patient was in a vegetative state with no prospect of recovery: A Hospital v SW [2007] EWHC 425 (Fam); [2007] LS Law Medical 273. See, eg Cumbria NHS Clinical Commissioning Group v S [2016] EWCOP 32 in which the parents of the patient expressed dismay at the delay incurred in bringing an application to court for a patient in PVS. Hayden J agreed, stating, ‘the avoidance of delay in medical treatment cases is an important imperative’ and the patient’s autonomy, dignity and integrity requires all involved in these cases to ‘to keep in focus that these important rights are compromised in consequence of avoidable delay’ (at para 13). And see para 15.53 below. See Applications relating to medical treatment: guidance authorised by Hayden J, the Vice President of the Court of Protection [2020] EWCOP 2: see bit.ly/VP-Guide-Jan-20. [2021] EWCOP 59. Ibid, para 3.

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Withdrawal and Withholding of Treatment  15.18

European Convention on Human Rights 15.17

Article 2 of the European Convention on Human Rights provides:

‘Everyone’s right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which this penalty is provided by law.’ It was suggested that the common law position would not survive the advent of the Human Rights Act 1998 (‘HRA’)1 which established direct liability on public authorities for breach of the European Convention on Human Rights: the absolute terms of Art 2, protecting the right to life, prohibited death by withdrawal of clinically assisted nutrition and hydration. However, in An NHS Trust ‘A’ v Mrs ‘M’ and An NHS Trust ‘B’ v Mrs ‘H’ the President rejected the view that the Bland approach was incompatible with Art 2.2 Both patients M and H fell within the RCP definition of PVS. The patients’ families supported the Trusts’ applications to withdraw artificial feeding and the Official Solicitor acting for the patients themselves agreed that withdrawal was in their best interests and did not violate Art 2. 1 Came into force 2 October 2000. 2 [2001] 1 All ER 801, [2001] 1 FCR 4062: the first case to consider the impact on medical treatment jurisprudence of the implementation of the HRA, and probably the first case decided in the High Court under the HRA.

15.18 The President concluded, first, that both patients were ‘alive’ within the meaning of Art 2. Secondly, the President rejected an argument by the Trusts that the intention in withdrawing artificial nutrition and hydration was not to bring about the patient’s death and agreed with the Official Solicitor’s position that the intention here would be to end life. The Trusts had argued that the purpose of the withdrawal of treatment would not be to kill, therefore the intention would not be to kill. The intention was simply to withdraw futile treatment. Reliance was placed on Brooke LJ in Re A (Children) (Conjoined Twins: Surgical Separation):1 ‘I do not consider that the Woollin extension[2] of the meaning of the word “intention” is appropriate when determining whether a doctor who performed a separation operation on conjoined twins in circumstances like these was intentionally killing the twin whose life was to be sacrificed. The doctor’s purpose in performing the operation was to save life, even if the extinction of another life was a virtual certainty. Like Robert Walker LJ I do not consider that the adoption of an autonomous meaning of the word “intentionally” in Article 2(1) of the Convention need have any effect on the interpretation of the concept of ‘intention’ in our national law, which has at long last been settled by the House of Lords in Woollin …’ Reliance was also placed on Walker LJ in Re A: ‘The Convention is to be construed as an autonomous text, without regard to any special rules of English law, and the word “intentionally” in Article 2(1) must be given its natural and ordinary meaning. In my judgment the word, construed in that way, applies only to cases where the purpose of the prohibited action is to cause death. It does not import any prohibition of

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15.18  Withdrawal and Withholding of Treatment the proposed operation [on the conjoined twins] other than those which are to be found in the common law of England.’3 Concern was expressed by the Trusts in argument that a ruling that the intention in the PVS situation was to kill would impact on the doctrine of double effect. This doctrine serves to relieve doctors of criminal responsibility in circumstances where pain-relieving medication is given which is for pain relief but also has the effect of causing a premature death. The President however stressed that: ‘This judgment is dealing only with the situation where treatment is to be discontinued and is not concerned with nor relevant to acts by doctors or other members of the health service, such as the giving of palliative drugs to a terminally-ill patient, which might have the effect of shortening his life.’4 1 [2001] 2 WLR 480. 2 In English law murder occurs when a life is ended by the intentional act of another. Further, causing death in circumstances where the defendant appreciates that death or serious harm is a virtually certain consequence of his positive act is also murder. (The ‘foresight’ test in R v Woollin [1999] 1 AC 82.) 3 [2001] 2 WLR 480. 4 [2001] 1 All ER 801, [2001] 1 FCR 4062 at para 31.

15.19 Thirdly, the President determined that, whilst the intention in withdrawing hydration and nutrition was to cause death, such withdrawal did not amount to an ‘intentional deprivation of life’ within Art 2. The President noted the view in Widmer v Switzerland1 in which the Commission2 had concluded that Art 2 does not require that ‘passive euthanasia’ – by which a person is allowed to die by not being given treatment – be a crime.3 Further, in Association X v UK4 the Commission determined that where a small number of children died as a result of a vaccination scheme whose aim was to protect the health of society, their deaths could not be considered to be as a result of an intentional deprivation of life within Art 2(1). The President stressed the importance of the autonomy of the patient. Treatment contrary to a patient’s best interests violates that right to autonomy. Article 8 of the Convention defends that right: the moral and bodily integrity of a person should be protected from unjustified assault.5 Given that for M and H ceasing medical treatment was in their best interests, it cannot be said that their death following the discontinuance of such treatment amounts to an intentional deprivation of life. By analogy there cannot be a duty in every case ‘to take steps indefinitely, until the patient’s body could no longer sustain treatment, irrespective of the circumstances or the prognosis’. Thus, the President accepted that there was not an intentional deprivation of life here: ‘Although the intention in withdrawing artificial nutrition and hydration in PVS cases is to hasten death, in my judgment the phrase “deprivation of life” must import a deliberate act, as opposed to an omission, by someone acting on behalf of the state, which results in death. A responsible decision by a medical team not to provide treatment at the initial stage could not amount to intentional deprivation of life by the state. Such a decision based on clinical judgment is an omission to act. The death of the patient is the result of the illness or injury from which he suffered and that cannot be described as a deprivation. It may be relevant to look at the reasons for the clinical decision in the light of the positive obligation of the state to safeguard life, but in my judgment, it cannot be regarded as falling within 562

Withdrawal and Withholding of Treatment  15.21 the negative obligation to refrain from taking life intentionally. I cannot see the difference between that situation and a decision to discontinue treatment which is no longer in the best interests of the patient and would therefore be a violation of his autonomy, even though that discontinuance will have the effect of shortening the life of the patient.’6 1 No 20527/92 (1993). 2 This does not therefore represent a decision and merely provides some guidance as to the likely approach in the European courts. 3 Also note Decision of Verieraltungsgericht Bremmen of 9 November 1959, cited in Fawcett No 1287/61 (p 36), a West German case in which it was held that a doctor did not infringe Art 2 by giving an overdose of drugs to the terminally ill. 4 (1978) 14 DR 31. 5 X and Y v Netherlands (1985) 8 EHRR 235; see also X v Austria and the ECJ decision in the HIV case cited at footnotes 1 and 2 of Nys, Physician Involvement in a Patient’s Death – a Continental European Perspective (1999) Med L Rev 7(2) at p 209. See also Peters v Netherlands (1994) 77A DR 75 at 79, indicating that unwanted medical intervention (the taking of urine samples) is an infringement of Art 8. 6 [2001] 1 All ER 801, [2001] 1 FCR 4062 at para 30 [emphasis added].

15.20 Fourthly, the President considered the positive obligation on the state to protect life.1 In Osman v UK2 it was stated: ‘The first sentence of Article 2(1) enjoins the State not only to refrain from the intentional and unlawful taking of life, but also to take appropriate steps to safeguard the lives of those within its jurisdiction.’3 However, the obligation to prevent harm: ‘must be interpreted in a way which does not impose an impossible or disproportionate burden on the authorities.’4 The President noted that the standard to be applied in assessing this positive obligation bore a ‘close resemblance’ to the English common law negligence standard. Thus, where a responsible clinical decision is made, on grounds of the patient’s best interests, to withhold treatment which is in accordance with a respectable body of medical opinion, ‘the state’s positive obligation under Article 2 is, in my view, discharged’. In summary: ‘Article 2 therefore imposes a positive obligation to give life-sustaining treatment in circumstances where, according to responsible medical opinion, such treatment is in the best interests of the patient but does not impose an absolute obligation to treat if such treatment would be futile.’5 1 The positive obligation is: ‘Everyone’s right to life shall be protected by law’. The negative obligation is: ‘No one shall be deprived of his life intentionally.’ 2 (1998) 29 EHRR 245 at para 115. 3 Harris, O’Boyle, Law of the European Convention on Human Rights: ‘The first sentence of Article 2(1) … establishes a positive obligation for states to make adequate provision in their law for the protection of human life.’ (p 38). 4 Osman v UK (1998) 29 EHRR 245 at para 116. 5 [2001] 1 All ER 801, [2001] 1 FCR 4062 at para 37.

15.21 Finally, the President did not consider that Art 3 of the Convention applied to M or H. Article 3 provides that: ‘No one shall be subjected to torture or to inhuman or degrading treatment or punishment.’ This was considered in two areas. First, Alert1 had argued that the withdrawal of treatment itself violated Art 3. The President determined that the withdrawal 563

15.21  Withdrawal and Withholding of Treatment of futile medical treatment could not be seen as torture or as punishment. Further, given that the withdrawal is for a benign purpose in accordance with the best interests of the patient, it was not inhuman or degrading treatment.2 Secondly, the Trusts had argued that, given the broad approach to the definition of ‘degrading treatment’ in D v UK,3 Art 3 should be invoked in order to ensure protection of a PVS patient’s right to human dignity: enforcing the continuation of life as a biological machine with no cognition was inhuman; allowing a family to witness their loved one in such an abhorrent state was degrading. Cazalet J had determined (two months before) that: ‘In D v UK … it was held that Article 3 of the Convention which requires that a person is not subjected to inhuman or degrading treatment includes the right to die with dignity. It is that right … which is to be protected through the declaration that I propose to make in this case.’4 The President, however, rejected the applicability of Art 3 to the withdrawal of treatment from a PVS patient because a victim has to be aware of the purported inhuman or degrading treatment they are experiencing: an insensate PVS patient has no feelings and no comprehension and thus there can be no violation of Art 3. The President assessed the appropriate scope of Art 2 by reference to Art 8, which protects patient autonomy.5 In deciding that the Bland decision was in accord with the values of democratic societies, the President noted whilst ‘the jurisdictional basis varies and thought processes differ’ the ultimate conclusion in Bland that withdrawal of nutrition and hydration was lawful had been accepted in many parts of the world.6 1 A ‘pro-life’ organisation whose attempt to be heard at the hearing was rejected by the President. 2 Noting V and T v UK (1999) 30 EHRR 121; Herczegfalvy v Austria (1992) 15 EHRR 437 (‘as a general rule, a measure which is a therapeutic necessity, cannot be regarded as inhuman or degrading. The Court may nevertheless satisfy itself that the medical necessity has been convincingly shown to exist’). 3 (1997) 24 EHRR 423 (‘the Court must reserve to itself sufficient flexibility to address the application of that Article in other contexts which might arise. It is not therefore prevented from scrutinising an applicant’s claim under Art 3 where the source of the risk of proscribed treatment in the receiving country stems from factors which cannot engage either directly or indirectly the responsibility of the public authorities of that country, or which, taken alone, do not in themselves infringe the standards of that Article. To limit the application of Art 3 in this manner would be to undermine the absolute character of its protections’). 4 A National Health Service Trust v D [2000] 2 FCR 577. 5 [2001] Fam 348, [2001] 1 All ER 801, [2001] 1 FCR 4062 at para 41. 6 See Grubb (et al), Reporting on the Persistent Vegetative State (1998) Med L Rev 6(2) at 161–210; Scotland: Law Hospitals NHS Trust v Lord Advocate [1996] 2 FLR 407; Republic of Ireland: Re A Ward of Court [1995] 2 IRLM 901; New Zealand: Auckland Area HB v AG [1993] 1 NZLR 235, Thomas J; South Africa: Clark v Hurst [1992] (4) SA 630 cited in Grubb (et al) at p 185. Also note in Germany the Supreme Court determined that ‘the withdrawal of treatment or care which leads to death may be done consistently with a patient’s rights: indeed may be a vindication of them even where there is a constitutionally protected right to life’. Cited in Nys, Physician Involvement in a Patient’s Death – a Continental European Perspective (1999) Med L Rev 7(2) 209 at 227.

15.22 In An NHS Trust ‘A’ v Mrs ‘M’ and An NHS Trust ‘B’ v Mrs ‘H’1 the families supported the Trust’s approach. Thus the case does not determine to what extent the right of relatives to family life under Art 8 impacts on the decisions to be made in this area. However, it is suggested that ultimately the assessment to be made is the same: is the withdrawal in the patient’s best interests? The President – whilst not deciding the question – doubted whether a family has rights in this area under Art 8 separate from the rights of the patient. 564

Withdrawal and Withholding of Treatment  15.23 Thomas J in Auckland Area HB v AG2 summed up the importance of balancing human rights in this area. It was important, he stated, to set against the right to life ‘another set of values which are central to our concept of life; values of human dignity and personal privacy’: ‘Medical science and technology has advanced for a fundamental purpose; the purpose of benefiting the life and health of those who turn to medicine to be healed. It surely was never intended that it be used to prolong biological life in patients bereft of the prospect of returning to an even limited exercise of human life … Nor, surely, was modern medical science ever developed to be used inhumanly. To do so is not consistent with its fundamental purpose.’3 In Pretty v UK, the European Court of Human Rights articulated the importance of Art 8 by stating that: ‘The very essence of the Convention is respect for human dignity and human freedom. Without in any way negating the principle of sanctity of life protected under the Convention, the Court considers that it is under Article 8 that notions of quality of life take on significance. In an era of growing medical sophistication combined with longer life expectancies, many people are concerned that they should not be forced to linger in old age or in states of advanced physical or mental decrepitude which conflict with strongly held ideas of self and personal identity.’4 In Burke, the Court of Appeal approved the dictum of Munby J at first instance that: ‘There is a very strong presumption in favour of taking all steps which will prolong life and save in exceptional circumstances or where the patient is dying the best interests of the patient will normally require such steps to be taken. In case of doubt, that doubt falls to be resolved in favour of the preservation of life but the obligation is not absolute. Important as the sanctity of life is, it may have to take second place to human dignity.’5 1 [2001] Fam 348, [2001] 1 All ER 801. 2 [1993] 1 NZLR 235. 3 Ibid. 4 [2002] 35 EHRR 1 at para 65. 5 R (Burke) v The General Medical Council [2005] EWCA 1003 at para 61; see also Re OT [2009] EWHC 633 (Fam).

European Convention on Human Rights: the Lambert decision 15.23 In Lambert v France,1 the Grand Chamber of the European Court of Human Rights had to consider whether the French court’s ruling that it was lawful to withdraw clinically assisted nutrition and hydration from Vincent Lambert2 constituted a violation of Art 2 of the ECHR. The case was brought by M Lambert’s parents and two siblings as applicants. In a detailed and clearly argued judgment – to which there is a short but fierce dissenting judgment – the ECtHR ruled that the procedure adopted in France was not a violation of Art 2 and that therefore the withdrawal of clinically assisted nutrition and hydration from M Lambert would be lawful.

565

15.23  Withdrawal and Withholding of Treatment The ECtHR’s judgment is of fundamental importance, not only for this essential finding, but also for the reasoning, which gives a clear indication of the approach which the ECtHR would take to a UK case, should one come before it. It is an indication of the importance of the Lambert decision that when dealing with the Gard case, the ECtHR referred to Lambert as ‘its landmark Grand Chamber case’.3 1 (2016) 62 EHRR 2 Application No 46043/14, 5 June 2015. 2 See para 15.5 above. The ruling was based on the 2005 ‘Leonetti’ Act which permits withholding or withdrawing treatment on the grounds that continuing it would demonstrate ‘unreasonable obstinacy’, a term comparable to but possibly wider than the English ‘futility’, since discontinuance is permitted where treatments ‘appear to be futile or disproportionate or to have no other effect than to sustain life artificially’. 3 Gard v UK (2017) 65 EHRR SE9 at para 79.

15.24 As a matter of context, the ECtHR stated that there was no consensus among Member States of the Council of Europe in favour of permitting withdrawal of clinically assisted nutrition and hydration in these kinds of cases, but that in the majority of Member States it is permitted subject to conditions.1 The court went on to note that in Member States permitting withdrawal, ‘there is a consensus as to the paramount importance of the patient’s wishes in the decision making process … however those wishes are expressed’.2 The ECtHR considered that states must be afforded a margin of appreciation in this sphere: ‘not just as to whether or not to permit the withdrawal of artificial lifesustaining treatment and the detailed arrangements governing such withdrawal, but also as regards the means of striking a balance between the protection of patients’ right to life and the protection of their right to respect for their private life and personal autonomy’.3 The role of the court therefore consists in examining the state’s compliance with its positive obligations flowing from Article 2.4 1 2 3 4

Lambert v France (2016) 62 EHRR 2 Application No 46043/14, 5 June 2015. Ibid, para 147. Ibid, para 148. Ibid, para 181.

15.25 Turning to what had actually happened in the Lambert case in the national courts, the ECtHR noted the clinicians’ and courts’ meticulous following of the process designated in France, which exceeded the legal requirements at every step. In particular, the ECtHR noted that the national courts had required that an expert report be obtained from three recognised specialists in neuroscience, who acted ‘on an independent and collective basis, after examining the patient, meeting the medical team and the care staff and familiarising themselves with the patient’s entire medical file’, as well as carrying out a series of tests. The family and medical teams were even given an opportunity to comment on their draft report.1 The experts concluded that M Lambert’s clinical condition ‘corresponded to a vegetative state, without any signs pointing to a minimally conscious state’.2 The ECtHR first considered whether the state’s negative obligations under Art 2 were engaged, and confirmed that they were not, noting the importance of the ‘distinction between the intentional taking of life and ‘therapeutic abstention’.3 The ECtHR went on to consider that in addressing a state’s positive obligations under Art 2, reference should also be made to Art 8 ‘and to the right to respect

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Withdrawal and Withholding of Treatment  15.26 for private life and the notion of personal autonomy which it encompasses’.4 The ECtHR stated that in addressing this question it took account of: ‘(i) the existence in domestic law and practice of a regulatory framework compatible with the requirements of Article 2; ‘(ii)  whether account had been taken of the [patient]’s previously expressed wishes and those of persons close to him, as well as opinions of other medical personnel; and ‘(iii) the possibility to approach the courts in the event of doubts as to the best decision to take in the patient’s interests.’5 As to the legislative framework, the ECtHR noted that the French court had established two important safeguards in its judgment: ‘Firstly, it stated that the sole fact that a person is in an irreversible state of unconsciousness or, a fortiori, has lost his or her autonomy irreversibly and is thus dependent on such a form of nutrition and hydration, does not by itself amount to a situation in which the continuation of treatment would appear unjustified on grounds of unreasonable obstinacy. Secondly, it stressed that where a patient’s wishes were not known, they could not be assumed to consist in a refusal to be kept alive.’6 Concerning the patient’s wishes, the ECtHR then pointed out: ‘… first of all that it is the patient who is the principal party in the decisionmaking process and whose consent must remain at its centre; this is true even where the patient is unable to express his or her wishes[7]… that in the absence of advance directives a number of countries require that efforts be made to ascertain the patient’s presumed wishes by a variety of means.’8 Lastly, the ECtHR pointed out that it had previously recognised ‘the right of each individual to decline to consent to treatment which might have the effect of prolonging his or her life’.9 Accordingly, the ECtHR considered that the French court was entitled to consider the evidence submitted to it was sufficient to establish Vincent Lambert’s wishes regarding continuation or withdrawal of treatment. 1 2

3 4 5 6 7

8 9

Lambert v France (2016) 62 EHRR 2 Application No 46043/14, 5 June 2015 at para 34, and see paras 38–43 for details of this meticulous piece of work, which involved examining the patient on nine occasions. Ibid, para 40. It should be noted, however, that what was once called the ‘bright line’ distinction between a diagnosis of PVS and one of MCS does not appear to pertain in France, and that the dissenting judgment casts some doubt on whether the diagnosis of PVS was in fact conclusive; this may be because the distinction between the outcomes of the two diagnoses is of less legal relevance than what was, at the time Lambert was decided, the case in the UK, with the same procedure being followed in either case in France. The UK has now moved towards a similar procedure by adopting a best interests approach to all cases. Ibid, para 124. Ibid, paras 142–143. Ibid, para 143. Ibid, para 159. The court referred to the Council of Europe’s Guide on the decision-making process regarding medical treatment in end of life situations, which recommends that ‘the patient should be involved in the decision-making process by means of any previously expressed wishes, which may have been confided orally to a family member or close friend’. Lambert v France (2016) 62 EHRR 2 Application No 46043/14, 5 June 2015, para 178. Ibid, para 180.

15.26 As to the third issue above – the possibility of recourse to the courts – in the instant case, the French court had not only been available to consider 567

15.26  Withdrawal and Withholding of Treatment the matter, but had the necessary power to suspend withdrawal of clinically assisted nutrition and hydration while the matter was investigated. In the course of that lengthy investigation, the national courts had gone beyond what the French process required to examine the case in meticulous detail, both from a medical perspective and in terms of investigating Vincent Lambert’s views and wishes. For these reasons, withdrawal of clinically assisted nutrition and hydration would not, in this case, violate Art 2 of the ECHR. 15.27 The dissenting judgment expressed bitter opposition to the majority, saying that: ‘what is being proposed is nothing more and nothing less than that a severely disabled person who is unable to communicate his wishes about his present condition may, on the basis of a number of questionable assumptions, be deprived of two basic life-sustaining necessities, namely food and water, and moreover that the Convention is impotent in the face of this reality. We find that conclusion not only frightening but – and we very much regret having to say this – tantamount to a retrograde step in the degree of protection which the Convention and the Court have hitherto afforded to vulnerable people.’1 1

para

15.23 n1, para OI-1.

15.28 The majority judgment in Lambert supports what the President decided in An NHS Trust ‘A’ v Mrs ‘M’ and An NHS Trust ‘B’ v Mrs ‘H’1 in some important respects: (a)

(b)

(c)

First, it confirms that withdrawal of clinically assisted nutrition and hydration will not necessarily be considered an ‘intentional deprivation of life’ within the meaning of Art 2, meaning that the state’s negative obligations under Art 2 are not engaged in these circumstances. Second, the European Court’s approach to the state’s positive obligation to preserve life is somewhat different to that of the President: rather than considering that the burden is discharged by the clinician following a responsible body of medical opinion, the court considered that these Art 2 obligations must be seen through the prism of Art 8 (the importance of which was also acknowledged by the President), and that continued existence should not be imposed on those who would clearly refuse it were they able to articulate a refusal. This is an approach more compatible with the spirit of the MCA and recent cases such as Aintree,2 as well as with the spirit of the Convention on the Rights of Persons with Disabilities. Third, the factors the European Court considered critical in deciding whether the French procedure was Art 2 compliant are clearly articulated. The first and third factors set out at PARA 15.25 above are easily satisfied by the UK procedure, but to ensure compliance with (ii) (proper account being taken of the wishes and views of the patient and those close to them, as well as those of medical personnel), a true balance-sheet analysis may be necessary, paying particular regard to any expressions of wishes, beliefs or values by the patient, as would normally be the case for any welfare decision under the MCA. This is in accordance with the way in which the Bland decision has come to be interpreted post-MCA.3 568

Withdrawal and Withholding of Treatment  15.30 (d)

(e)

Fourth, the possible relevance of Art 3 was raised but ultimately not answered by the European Court in Lambert. As well as claiming that withdrawal of clinically assisted nutrition and hydration would be in breach of Art 2, the applicants argued it would also constitute ill treatment amounting to torture, and so would violate Art 3. The ECtHR did not rule on this point, having decided that the applicants lacked standing to bring any claim directly on M Lambert’s behalf,4 and considered only the alleged violation of Art 2, which the court held that the applicants could raise directly. Finally, the dissenting judgment of five judges refers to Vincent Lambert being ‘in a persistent vegetative state, with minimal, if any, consciousness’;5 they were struck by the fact that he had survived for 31 days without food when clinically assisted nutrition and hydration was first withdrawn.

1 [2001] 1All ER 801, [2001] 1 FCR 406. 2 Aintree University Hospitals NHS Foundation Trust v James [2014] 1 All ER 573. 3 See Chapter 3: Deciding for Others – Adults at para 3.16 and para 15.44 below (current approach to diagnosis). 4 On the ground that there was no convergence of their interests; it is worth noting that there appeared to be no one equivalent to the Official Solicitor who could act directly for Vincent Lambert, although his wife, in a subsequent chapter of this legal saga, was appointed his guardian. 5 Paragraph 4. The ECtHR issued a useful fact sheet on end-of-life cases in May 2019: see bit. ly/29Klqgi.

MCS: legal principles 15.29 Unlike those in VS, a person in MCS will have some, although very much reduced, consciousness. The principles established in Bland – that the futility of treatment alone can justify its termination – cannot apply where some conscious life remains, no matter how diminished that consciousness may be. In such cases the continuation or withdrawal of medical treatment, which will include the provision of clinically assisted nutrition and hydration, must be determined in accordance with the person’s best interests, which are to be ascertained by applying s 4 MCA and weighing up the advantages and disadvantages of each proposed course.1 1

Re M (Adult Patient) (Minimally Conscious State: Withdrawal of Treatment) [2011] EWHC 2443 (Fam), [2012] 1 WLR 1653; M v Mrs N and Bury Clinical Commissioning Group and A Care Provider [2015] EWCOP 76, [2016] COPLR 88, (2015) 18 CCL Rep 603 (19 November 2015). See further on MCS below at para 15.30.

Withdrawal of treatment in MCS 15.30 Historically, the divide between VS and MCS was in the diagnosis: if a diagnosis of PVS had been made clearly and unequivocally and confirmed by experts of sufficient standing, those seeking a court declaration authorising withdrawal rarely faced difficulties, especially as the vast majority of cases were brought with support of the patient’s family. Cases involving a diagnosis of MCS, however, were less clear. The courts have adopted a more rigorous and detailed evaluation both of the patient’s clinical condition and an analysis of best interests.

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15.30  Withdrawal and Withholding of Treatment The trend has continued with greater focus on detailed forensic investigation and assessment of the best interests of the patient. In considering best interests, the court must balance burdens of life against the benefits of continued existence. Wishes and feelings, values and beliefs of the patient, and the views of family members and those caring for the patient also need to be taken into account. Notwithstanding this recent shift in the law, applications to withdraw clinically assisted nutrition and hydration from clinically stable patients in MCS remain rare. In Re M,1 the patient had initially, although incorrectly, been diagnosed as being in a PVS and this had led her family to make their application for withdrawal of clinically assisted nutrition and hydration. With the legal outcome so dependent at that time upon accurate diagnosis, Baker J2 emphasised the crucial role of assessment tools and how it is of the ‘utmost importance that every step should be taken to diagnose the patient’s true condition before any application is made to court’. At the end of the judgment, Baker J set out several ‘observations … to assist in future applications’ for the withdrawal of CANH, which had received the approval of the President, effectively mandating the use of a SMART assessment and, in cases of MCS, a series of WHIM assessments, before an application could be brought to court to authorise the withdrawal of CANH. 1 2

Re M (Adult Patient) (Minimally Conscious State: Withdrawal of Treatment) [2012] 1 WLR 1653. Ibid, paras 258–259.

15.31 The courts now place less emphasis on establishing a specific diagnosis of VS or MCS, but will nevertheless require evidence that it is not in the patient’s best interests to live in their current level of awareness and that there is no prospect of any meaningful recovery. Given those requirements, clinical evaluation and diagnostic testing is still an important part of the work up to any application. 15.32 Baker J’s judgment in Re M1 also remains relevant in that it sets out the test to be applied when considering a patient’s best interests. Simply, it is the balancing exercise which would be applied in respect of any other best interests decision under the MCA. Baker J was ‘wholly unpersuaded’ by an argument from the Official Solicitor that where a patient in MCS was clinically stable, it could never be in their interests to withdraw clinically assisted nutrition and hydration, and that the balance sheet analysis should not be adopted.2 Baker J accepted the submissions of the PCT that: ‘whilst it is clear that the benefit of preserving of life will always weigh extremely heavily in the balance, it cannot be assumed that there will always be no relevant dis-benefit to weigh against it. Even in a clinically stable patient there must be room for any relevant psychological and emotional aspects of their position to be taken into account as part of the balancing exercise …. the fact that the balance is most likely to come down in favour of preserving life in a MCS patient whose only medical treatment need is for ANH is not grounds for saying that a balance between factors in support of and against providing such treatment need not be struck in such cases. To do away with the balancing exercise and balance sheet would be to disregard the requirement of s.4(2) MCA that consideration be given to “all of the relevant circumstances” and would also disregard s.4(6) MCA which requires consideration of those matters of import to P or that P would be likely to consider if he could do so, when coming to any best interests decision.’3 570

Withdrawal and Withholding of Treatment  15.33 Baker J went on to say: ‘Lord Goff specifically distinguished between cases in which, having regard to all the circumstances, it may not be in the patient‘s best interests to continue treatment and cases in which a patient was permanently insensate and thus unable to benefit at all from the treatment. Crucially Lord Goff observed: “In both classes of case, the decision whether or not to withhold treatment must be made in the best interests of the patient. In the first class, however, the decision has to be made by weighing the relevant considerations.” There is no justification for introducing a requirement of clinical instability before embarking on a balance sheet analysis in MCS cases. To do so would introduce an impermissible gloss on the best interests test, and undermine the clear requirement laid down in s. 4 of the MCA to consider all the relevant circumstances when determining best interests. It would also lead to lengthy satellite argument as to the meaning of “clinical stability” and the diversion of legal and medical resources into determining that issue. ‘On the other hand, the fact that a patient is demonstrating what may be seen as the components of clinical stability is unquestionably an important factor to be taken into account in the balance sheet analysis itself. For example the fact that a patient is not experiencing undue pain or discomfort, is not suffering from any acute illnesses, and seems psychologically settled, will be significant factors to take into account. The longer the patient has demonstrated these symptoms, the greater the period of clinical stability and the more weight to be attached to these factors in the balancing exercise.’4 Baker J identified a number of additional relevant factors which should be incorporated into the best interests analysis as well as the preservation of life: the person’s wishes and feelings; any pain they suffered and, correspondingly, any enjoyment they got out of life; their prospect of recovery; their dignity; and finally the wishes and feelings of family members and carers. Re M gives some indication of how the best interests analysis will be conducted in a case where the patient is stable. In cases of MCS the preservation of life weighs heavily and Baker J In Re M concluded on the facts that it was not in the patient’s best interests for clinically assisted nutrition and hydration to cease. 1

Re M (Adult Patient) (Minimally Conscious State: Withdrawal of Treatment) [2012] 1 WLR 1653 at para 102. 2 Ibid. 3 Ibid, para 101. 4 Ibid, para 102–103.

15.33 In St George’s Healthcare NHS Trust v P and Q, Newton J described how a judge must approach the balance sheet: ‘I bear in mind of course that when considering the weight to be attached to the various factors a primary consideration and lodestone is the principle of sanctity of life which whilst not absolute must always weigh heavily in the balance. Furthermore, in determining what weight to give to the various factors in favour of or against life preserving treatment particular considerations arise from the MCA Code of Practice as endorsed by Aintree.[…] Those are particularly whether the proposed treatment is futile (in the sense of being ineffective or being of no benefit to the patient), overly burdensome to the patient and or whether there is no prospect of recovery.’1 571

15.33  Withdrawal and Withholding of Treatment There has been a notable shift in recent years to the recognition of the right to autonomy of the patient when difficult and complex medical treatment decisions are made.2 The quality of life should be judged not by the values of others but from the particular perspective of the patient: the judge must arrive at an objective assessment of whether continuation of life-sustaining treatment is in this patient’s best interests, seen through the ‘prism of the subjective position of the patient.’3 Where the patient has made no advanced decision nor given any power of attorney, evidence from their family and friends will be highly relevant in the application of section 4(6) and (7) MCA. As the judge put it in St George’s Healthcare NHS Trust v P and Q when declining to accept the opinions of the treating team as to whether or not P would value their present existence in MCS: ‘I attach far more weight to the relevant expressions of his articulate and well informed family members and friends who have direct knowledge of P’s pre-injury knowledge, understanding and philosophy, in particular those who know about his beliefs and values.’4 1 [2015] EWCOP 42, [2015] Med LR 463 at para 34 – an application regarding withdrawal of renal replacement therapy from a man in MCS. 2 See Chapter 3: Deciding for Others – Adults. 3 Barnsley Hospital NHS Foundation Trust v MSP [2020] EWCOP 26 at para 33. 4 n1 above at para 40.

15.34 In the 2014 case of United Lincolnshire Hospitals NHS Trust v N,1 Pauffley J made a declaration in the case of a patient in MCS that an NHS Trust need not replace a PEG feeding tube that had become dislodged and upon which the patient was dependent for the provision of clinically assisted nutrition and hydration, nor make further efforts to establish and maintain a method of providing Ms N with artificial nutrition. Ms N was a woman in her fifties who had suffered a brain haemorrhage and thereafter been in an MCS. She was transferred to hospital from the care home where she lived when her PEG tube was noted to have come out. In hospital Ms N was physically obstructive to interventions, which made it practically very difficult to replace her feeding tube. In spite of her minimally conscious state Ms N managed to remove a naso-gastric tube that had been placed and secured in her nose, and an intravenous line placed in her arm; on at least two occasions Ms N physically prevented the insertion of tubes into her stomach despite being sedated. The hospital did, though, manage to secure an intravenous line into her foot, which Ms N could not reach to pull out, through which fluids were administered. Ms N’s family gave evidence that Ms N had ‘always been a private person and would like to be respected for that’ and that Ms N had never enjoyed being touched, even as a child, so that the current necessity of having everything done for her must be intolerable. Evidence was also given of a conversation that Ms N had with a friend before her brain injury when Ms N had said that in the event of a road accident she would not like to continue life in a reduced capacity and that, although this situation was different, Ms N’s family believed that the conversation summarised what Ms N’s views as to her current situation would have been. The family were agreed that Ms N would prefer the dignity of not having a PEG tube forced on her.2 In conducting the analysis as to Ms N’s best interests, Pauffley J held that ‘being allowed to die would accord with N’s reported comment made prior to 572

Withdrawal and Withholding of Treatment  15.35 her brain injury as to her wishes and feelings should she be incapacitated in the context of a road traffic accident’, and that: ‘by authorising the non-replacement of the PEG tube or other methods of providing artificial nutrition and thereby allowing N to “die with dignity”, the court would be acting in accordance with what family members believe she would have wanted’.3 The judge emphasised that what the views of the patient might be, and what the views of the family are, are highly material factors when considering best interests, although not determinative. Pauffley J concluded that it was not in Ms N’s best interests that a further attempt be made to insert a PEG or to secure other means of providing her with artificial nutrition and authorised the withdrawal of intravenous fluid and dextrose.4 The case was not about the withdrawal of clinically assisted nutrition, rather it concerned the lawfulness of ceasing to make efforts to establish a means of providing it, but the judge’s analysis did not focus on this distinction; instead, Pauffley J focused firmly – and appropriately – on the best interests of the patient, as part of which consideration her previously expressed views were given significant weight. 1 2 3 4

[2014] EWCOP 16, [2014] COPLR 660. Ibid, paras 29–33. Ibid, para 59. Ibid, paras 60, 65–66.

15.35 It was not until the ground-breaking decision in the case of Mrs N in 20151 that the court first authorised the withdrawal of clinically assisted nutrition and hydration from a patient in MCS. Mrs N, aged 68, had suffered with multiple sclerosis for 23 years. Within six years of diagnosis she was wheelchair-dependent and since 2007 had been cared for in a care home having become doubly incontinent and unable to be fed orally. By 2010 Mrs N was quadriplegic and had descended into dementia. The court heard from three medical experts regarding the diagnosis of her disorder of consciousness: the only difference between the experts was whether the agreed observation that Mrs N could visually fix and track objects must necessarily exclude a diagnosis of PVS. Hayden J found that this visual tracking – with little if any recognition of what the object might be – was the ‘sole extent of her awareness’. However, given this agreed observation, a diagnosis of PVS would be contrary to the then-current Prolonged Disorders of Consciousness Guidelines (to which all three experts had contributed). The judge noted that it was ‘not the role of a judge in the Court of Protection to arbitrate on issues of medical controversy’ and the experts’ disagreement as to the correct nomenclature to be applied was an ‘arid debate clinically’. Although Hayden J questioned whether a ‘bright line’ delineation between VS and MCS was artificial,2 he would not endorse even a respectable opinion that went outside the recently drafted and widely respected Prolonged Disorders of Consciousness Guidelines. By reference to those Guidelines, the patient was considered to be in MCS. Hayden J emphasised how the patient must lie at the very heart of the decisionmaking process and their wishes and feelings, as far as they were ascertainable, must be afforded great respect; the patient’s own wishes were not merely confined to what the patient may have said, but also to non-verbal behaviours or implications drawn from past behaviours and attitudes.

573

15.35  Withdrawal and Withholding of Treatment Hayden J stated: ‘where the wishes, views and feelings of P can be ascertained with reasonable confidence, they are always to be afforded great respect. That said, they will rarely, if ever, be determinative of P’s “best interests”. Respecting individual autonomy does not always require P’s wishes to be afforded predominant weight. Sometimes it will be right to do so, sometimes it will not. The factors that fall to be considered in this intensely complex process are infinitely variable e.g. the nature of the contemplated treatment, how intrusive such treatment might be and crucially what the outcome of that treatment may be for the individual patient. Into that complex matrix the appropriate weight to be given to P’s wishes will vary. What must be stressed is the obligation imposed by statute to inquire into these matters and for the decision maker fully to consider them. Finally, I would observe that an assessment of P’s wishes, views and attitudes are not to be confined within the narrow parameters of what P may have said. Strong feelings are often expressed non-verbally, sometimes in contradistinction to what is actually said. Evaluating the wider canvass may involve deriving an understanding of P’s views from what he may have done in the past in circumstances which may cast light on the strength of his views on the contemplated treatment.’3 He went on to consider the MCA and its Code of Practice and said: ‘the framework of the Act and the scheme of the Code of Practice place great emphasis on the importance of personal autonomy and the obligation to be alert to direct or indirect discrimination against those who lack capacity. Decisions taken in the ‘best interests’ of an incapacitous individual must factor in the recognition that respect for an individual’s past and present (where relevant) wishes and identifiable codes and beliefs by which he has lived are a crucial part of promoting best interests. To subvert these to a substitution of an objective evaluation i.e. to superimpose what the Court thinks best, may result in indirect discrimination. The central objective is to avoid a paternalistic approach and to ensure that the incapacitous achieve equality with the capacitous.’4 The compelling evidence of the family showed that Mrs N had been horrified by her own parents’ descent into dementia and how – although she loved them dearly – she had stopped visiting her parents, being unable to bear what they had become. The judge was ‘left in little doubt that she would have been appalled to contemplate the early pain, increasing dependency and remorseless degeneration that has characterised her life for so long’ and accepted Mrs N’s family’s view that Mrs N would have discontinued treatment some considerable time ago if able to do so. As Hayden J put it, ‘to force nutrition upon her would be to fail to respect the person she is and the code by which she has lived her life’.5 In concluding, Hayden J said: ‘… this case is not concerned with a right to die. No such right exists. What is in focus here is Mrs. N’s right to live her life at the end of her days in the way that she would have wished. I am required to evaluate the “inviolability of life” as an ethical concept and to weigh that against an individual’s right to self-determination or personal autonomy. Not only do these principles conflict, they are of a fundamentally different complexion. The former 574

Withdrawal and Withholding of Treatment  15.36 is an ideological imperative found in most civilised societies and in all major religions, the latter requires an intense scrutiny of an individual’s circumstances, views and attitudes. The exercise is almost a balance of opposites: the philosophical as against the personal. For this reason, as I have already indicated, I consider that a formulaic “balance sheet” approach to Mrs. N’s best interests is artificial. ‘… I start with the assumption that an instinct for life beats strongly in all human beings. However, I am entirely satisfied that Mrs. N would have found her circumstances to be profoundly humiliating and that she would have been acutely alert to the distress caused to her family, which she would very much have wanted to avoid. LR told me that Mrs. N would not have wanted to have been a burden; that I also believe to be entirely reliable. ‘There is an innate dignity in the life of a human being who is being cared for well, and who is free from pain. There will undoubtedly be people who for religious or cultural reasons or merely because it accords with the behavioural code by which they have lived their life prefer to, or think it morally right to, hold fast to life no matter how poor its quality or vestigial its nature. Their choice must be respected. But choice where rational, informed and un-coerced is the essence of autonomy. It follows that those who would not wish to live in this way must have their views respected too. ‘… Ultimately, I have concluded that her wishes, so thoughtfully presented by her family, coupled with the intrusive nature of the treatment and its minimal potential to achieve any medical objective, rebut any presumption of continuing to promote life. Quite simply, I have come to the conclusion that it would be disrespectful to Mrs. N to preserve her further in a manner I think she would regard as grotesque.’6 1 2 3 4 5 6

M v Mrs N and Bury Clinical Commissioning Group and A Care Provider [2015] EWCOP 76, (2015) 18 CCL Rep 603, [2016] COPLR 88 (19 November 2015). Ibid, para 73. Ibid, para 28. Ibid, para 30. Ibid, paras 60–61. Ibid, paras 70–75.

15.36 Two points stand out from this decision which may be relevant to future cases where a best interests analysis is carried out. First, Hayden J took as a starting point the ‘instinct for life’ – although he was careful to relate that instinct to what was known about the individual – in preference to an abstract statement of principle. Careful scrutiny of the specific evidence relating to each patient is central to any assessment of best interests and a different context may well lead to a different balance being struck when considering an application for withdrawal of treatment. See for example those cases where the event which has ultimately precipitated court proceedings is an attempted suicide.1 It can confidently be said that the preservation of life will always be a strong and compelling factor to weigh in the balance, but it remains to be seen whether what is known of the individual person’s attitude to the principle of the sanctity of life is found to have any bearing on the weight to be attached to its preservation. Second, Hayden J focused strongly on the wishes, feelings and values of Mrs N in the broadest sense, as Pauffley J had done in the United Lincolnshire case, taking evidence both from things the patient had said and also from how 575

15.36  Withdrawal and Withholding of Treatment they had lived their life. In doing so, Hayden J gave full recognition to their right to autonomy and to have their case considered from their own particular perspective, as discussed above. It is notable that Baker J in Re M placed rather less emphasis on M’s wishes and feelings, because Baker J was unable to find evidence that M had specifically contemplated the situation in which she found herself when making statements which appeared to be relevant. 1 See most recently: Williams J in A London NHS Trust v (1) CD, (2) EF & (3) AB [2021] EWCOP 23 concerning Lilia, a 20-year-old woman who was left in a VS after a failed attempt to end her life by strangulation. See in particular the evidence obtained by the from her friends, grandparents and father that the Judge summarised at paras 44–46. See also Hayden J in Birmingham Women’s and Children’s NHS Foundation Trust v (1) JB & (2) KA [2020] EWHC 2595 (Fam), [2021] 1 FLR 1328 concerning a similar scenario where a 12-year-old boy who had attempted to end his life by strangulation.

15.37 The thorough investigation of the factual background in each case remains at the heart of judicial assessment of best interests. In May 2021, Hayden J was asked to consider an application by a Trust for a declaration that it was lawful and in a patient’s best interests not to undergo further dialysis.1 P suffered from schizophrenia which deprived him of a real understanding of his medical condition and the need for dialysis. He also suffered from delusions, including that he would be charged for medical treatment. In a judgment that is typical of this judge – and demonstrates the care that he (as Vice President of the Court of Protection) considers should be applied to ascertaining a patient’s wishes – he said: ‘Though AI lacks capacity to take decisions in respect of his treatment, substantially in consequence of his Schizophrenia, this does not mean that his wishes or feelings do not require to be evaluated. On the contrary, they remain integral to his autonomy, which this court is charged to protect (see: [2]…). AI has consistently been resistant to cooperating with dialysis. When he is physically weak and struggling to breathe, his response is passively to cooperate and then to disengage when he feels sufficiently restored. ‘Behaviour, when assessed carefully, may sometimes communicate feelings more effectively and accurately than words. Indeed, it may sometimes contradict what is said. AI has gradually reduced even his superficial cooperation with dialysis when in the community. Initially limiting it to twice, on two separate occasions, and finally to non-compliance (which was always his stated position whilst in hospital). On his most recent admission he withdrew the tunnel line, as I have recorded above. This was an unprecedented action. I was also told by … that it would have been painful. I note too that this has occurred at a time when AI has deteriorated very significantly. It is difficult not to draw the most obvious inference that he has become tired by the effort of the dialysis, which has been made much more difficult by the pattern of non-compliance, followed by urgent medical treatment. Whilst his belief system may be delusional, his exhaustion is real. The signal is, to my mind, that he has had enough. Interestingly, when describing AI’s personality, his brother in law … told me that he had always been fastidious about clean and smart clothes but latterly had, he implied, become neglectful of and disinterested in, his appearance.’3 1 University Hospital Birmingham NHS Foundation Trust v (1) AI & (2) K [2021] EWCOP 37. 2 Citing SS v London Borough of Richmond Upon Thames [2021] EWCOP 31. 3 n1 above at para 15.

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Withdrawal and Withholding of Treatment  15.40 15.38 Although many of the applications for withdrawal arise in patients suffering from long standing conditions, the Court frequently has to deal with applications brought urgently, on short notice and with less opportunity to obtain and exchange very detailed evidence of P’s wishes and beliefs. One consequence of the Covid-19 pandemic is that doctors have been required to take decisions in respect of many younger patients who may never have contemplated or discussed their wishes and beliefs. The court will not shy away from taking decisions in these difficult cases. 15.39 In University Hospital Leicester NHS Trust v (1) NZ (2) MA & (3) RZ1 the Trust applied for a declaration that it was not in the best interests of NZ to continue to receive extra-corporeal membrane oxygenation. NZ was a 30-year-old woman with Covid-19 which had in turn caused pneumonitis – an inflammatory condition of her lungs. The medical opinion considered it to be unethical to continue treatment. As Hayden J noted: ‘NZ’s husband and sister take a different view. This is not grounded in any real difference as to the medical situation; it is, for them, a conflict between a religious belief, genuinely and devoutly held, and medical science. It is a conflict which cannot be reconciled. To condone any act that would be seen to bring life to an end would, the family believe, be inconsistent with their faith. They recognise the medical evidence and engage with it. In particular, they accept that continuation of treatment may cause NZ to suffer but consider that such suffering is the will of God and attracts God’s love. MA told me that such suffering is to be welcomed and that NZ would welcome it. It is through suffering that we know God, he explained. This principle echoes not only throughout Islam, but throughout the whole of the JudeoChristian tradition. It poses real ethical dilemmas for those who understand their faith in these uncompromising and uncompromisable terms. I do not doubt that these are the genuinely held beliefs of NZ’s husband. Her sister also articulated them with equal force, though I note she required to be prodded to do so by her brother-in-law. I think it is likely that NZ, had she confronted this dilemma, would, in principle, have expressed the same religious view as her family. I am quite sure that she would have wanted to do all that she could to be with her children.’2 Despite his conclusions as to NZ’s beliefs, the judge found that the balance weighed in favour of withholding further ECMO and allowing the Trust to limit treatment to symptom palliation. 1 2

[2021] EWCOP 16, (2021) 179 BMLR 67. Ibid, para 20.

C  DIAGNOSIS OF PVS AND MCS 15.40 Historically, the approach taken to the grant of a declaration by the court permitting withdrawal of life-supporting treatment from someone with a prolonged disorder of consciousness turned on what the court found to be the correct diagnosis; the diagnosis determined whether or not an assessment of the patient’s best interests in the form of a balance sheet is even required. Once a determination of PVS was made, following Bland, only one result would generally follow, namely that withdrawal of feeding is lawful. The approach taken by the court has evolved in recent years. The current approach 577

15.40  Withdrawal and Withholding of Treatment is considered in detail below, but it is useful to understand first how the courts have previously addressed the issue of diagnosis. In addition, whilst no longer as critical for legal purposes, it is required for clinical decision-making,1 and is still therefore likely to be a feature moving forward, especially when examining expert evidence. As noted in the above-referenced 2020 Royal College of Physicians’ Prolonged disorders of consciousness following sudden onset brain injury: national clinical guidelines (the ‘2020 RCOP Guidelines’), ‘it may also help to establish realistic expectations for outcome in discussion with family and friends’.2 1 2

2020 RCOP Guidelines at p 41. Ibid, p 36.

15.41 Reference to the permanence of a vegetative state indicates that that there is no prospect of recovery.1 There has been significant anxiety about whether the diagnosis of VS is being accurately applied in British hospitals. Public concern was expressed following the well-publicised recovery of Andrew Devine. It was reported that Devine had begun communicating with his family eight years after being diagnosed as being in PVS. He suffered brain damage when he was crushed during the Hillsborough football stadium disaster. He could now respond to questions by pressing an electronic pad with his finger, and in April 2014 was able to attend the 25-year Hillsborough memorial service. The case was reported as being ‘likely to fuel the controversy about experts’ ability to diagnose persistent vegetative state, and raise fresh doubts about right-to-die cases.’2 The press and public concern about misdiagnosis are not ill-founded. A retrospective study has been reported by Dr Keith Andrews (then Medical Director, Royal Hospital for Neuro-disability, Putney, London and a neurologist at the forefront of rehabilitation of ‘vegetative’ patients) and others of 40 patients with a diagnosis of vegetative state who were admitted to the Putney Brain Injury Rehabilitation Unit.3 Of those, a staggering 42% were found to be able to communicate and were therefore not vegetative. One patient who had been thought to be vegetative for seven years was in fact dictating letters to his wife within two weeks of admission. This paper provides a stark example of the criticisms levelled at the previous emphasis on taking a decision which was dependent upon the accuracy of a diagnosis. 1

Compare the description that is, ‘no prospect of recovery’ with that of a ‘minimally conscious state’ in which individuals ‘retain some capacity for cognitive processing and can activate similar brain networks, in response to painful stimulation; suggesting that they can experience pain’. Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardised neurobehavioural assessment: (2009) BMC Neurology, 9:35. 2 National newspaper and television coverage on 27 March 1997; quotation from the British Media Review. See also bit.ly/1qCHDNV. 3 Andrews et al, Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit (1996) British Medical Journal, p 313.

15.42 Such errors in diagnosis continue to be made even as recently as 2015. In St George’s Healthcare NHS Trust v P and Q,1 the NHS Trust applied to the court to withdraw treatment from a man who, it was asserted, was in a VS. SMART testing was ordered by the court despite the Trust arguing that this was unnecessary given the patient’s clinical neurological condition, the findings on CT scans and EEG results. However, after reviewing the findings on SMART testing and video footage taken by the family, the two courtappointed experts each considered the patient was in a minimally conscious 578

Withdrawal and Withholding of Treatment  15.44 state – a diagnosis with which the Trust’s consultant neurologist then agreed. The judge accepted the diagnosis of MCS and did not authorise the withdrawal of treatment, describing the case as ‘yet another stark example of the absolute necessity for a structured assessment to have occurred before any application is even contemplated’.2 Similarly, in M v Mrs N and Bury Clinical Commissioning Group and A Care Provider,3 the authors are aware that the evidence in court (although not recorded in the judgment) was that a patient thought to be in a vegetative state showed distinct improvement in her levels of consciousness after potentially sedating medications were withdrawn and a further drug to stimulate awareness was given. No SMART assessment had been carried out prior to the changes in her medication, but the subsequent assessment demonstrated that she was showing signs of awareness which placed her in MCS rather than VS. 1 [2015] EWCOP 42, [2015] Med LR 463. 2 Ibid, para 8. That is, a diagnosis reached by clinical consensus, according to the observations reported by each member of the clinical team, during structured and unstructured meetings. 3 [2015] EWCOP 76, (2015) 18 CCL Rep 603, [2016] COPLR 88. See also NHS Cumbria CCG v Miss S, D and T [2016] EWCOP 32.

15.43 A paper by Helen Gill-Thwaites, an occupational therapist also of the Royal Hospital for Neuro-disability,1 described the many factors which contributed to the high rates of misdiagnosis in Vegetative State (‘VS’) patients; namely (a) the diverse range of differential diagnoses and definitions evident within medicine, law and the media; (b) assessors’ knowledge, experience and availability; (c) the method of assessment; (d) the degree of involvement of family and carers in the assessment; and (e) the manner in which the patient has been managed. The paper’s conclusions called for: ‘clear and prescriptive internationally agreed mandatory guidelines and checklists [in order to] determine definitions, provide agreed levels of expertise among both the physician and the MDT, outline frequencies and types of assessments to be applied, ensure systematic family and carer involvement and stipulate the application of mandatory factors in respect of patients’ management.’ These concerns led to a call for acceptance and adoption of objective criteria against which patients can be assessed but also, in the legal context, an increasing rejection of the distinction between VS and MCS, and a heightened emphasis on the broad spectrum that comprises a patient’s awareness in the assessment of the patient’s best interests. 1 Gill-Thwaites, Lotteries, loopholes and luck: Misdiagnosis in the vegetative state patient (December 2006) Brain Injury 20(13–14), 1321–1328.

Current approach to diagnosis 15.44 Following cases such as Mrs N1 and Lambert,2 the trend has continued towards reducing the focus on diagnosis, and thus the split between VS and MCS and focussing instead on whether withdrawal of treatment is in the best interests of the patient. In Briggs v Briggs (No 2),3 Charles J considered whether CANH ought to be withdrawn from a patient in MCS who had, by nature of his profession as a police officer and former experience in the army, often been faced 579

15.44  Withdrawal and Withholding of Treatment with situations involving death and serious injury.4 He had also previously discussed withdrawal of a feeding tube with his wife, in the context of making this decision on behalf of his mother-in-law, and stated he would never want a feeding tube.5 There was a dispute between the treating clinical team, who believed the patient should be transferred to a rehabilitation unit for monitoring and promotion of his potential progress, and his family, who believed he should be transferred to a hospice, with CANH withdrawn, which would inevitably result in his death.6 1 2 3 4 5 6

M v Mrs N and Bury Clinical Commissioning Group and A Care Provider [2015] EWCOP 76, (2015) 18 CCL Rep 603, [2016] COPLR 88 (19 November 2015). (2016) 62 EHRR 2 Application No 46043/14, 5 June 2015, see para 15.23 above. Briggs v Briggs (No 2) [2016] EWCOP 53, [2017] 4 WLR 37. Ibid, para 106. Ibid, para 108. Ibid, at para 4.

15.45 Charles J confirmed that the test to be applied is no longer a matter of common law but rather enshrined within statute (namely, s 4 of the MCA) which, taking into consideration the views expressed in Aintree, should be applied holistically.1 Charles J cautioned decision-makers against making a decision which aligns with their own views and instead emphasised the importance of ascertaining, to the extent reasonably possible, the views of the patient, stating: ‘But, in my view when the magnetic factors engage the fundamental and intensely personal competing principles of the sanctity of life and of selfdetermination which an individual with capacity can lawfully resolve and determine by giving or refusing consent to available treatment regimes: (i) the decision-maker and so a judge must be wary of giving weight to what he thinks is prudent or what he would want for himself or his family, or what he thinks most people would or should want; and (ii) if the decision that P would have made, and so their wishes on such an intensely personal issue can be ascertained with sufficient certainty it should generally prevail over the very strong presumption in favour of preserving life.’2 Indeed, in Charles J’s ‘overview’, it was stated that consideration of what Mr Briggs would have wanted to do, and what Mr Briggs would have considered was in their best interests, was the ‘weightiest and so determinative factor’ in determining his best interests.3 1 2 3

Briggs v Briggs (No 2) [2016] EWCOP 53, [2017] 4 WLR 37, paras 54–55, citing Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67 at paras 1, 2, 24, 26 and 39. Ibid, para 62. Ibid, at ‘Overview’, (7).

15.46 Shortly after the decision of King LJ, the Court of Protection was again faced with a decision on the withdrawal of CANH from an individual suffering from brain damage secondary to a catastrophic stroke. In PL v Sutton Clinical Commissioning Group,1 PL was not diagnosed as falling within either MCS or VS; she had some features of MCS, but in some respects, her functioning was more limited.2 Hayden J observed that there is ‘potentially a wide range of variables’ within the broad category of MCS, and noted the

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Withdrawal and Withholding of Treatment  15.47 concerns raised in Aintree3 that the labelling of states of consciousness can be misleading. Hayden J concluded that it: ‘would be wrong … to conclude that where the patient is not diagnosed as MCS or VS, a significantly different approach to the determination of the case should be taken. Quite apart from anything else, as is well-recognised, the diagnosis is often difficult, and may indeed change over time.’ Citing extensively from Briggs (No 2),5 Hayden J considered the views of PL, insofar as they were reasonably ascertainable, and concluded that PL would not have wanted to be kept alive artificially in the event that they suffered a major stroke. It was determined that it was not in PL’s best interests to continue receiving CANH and therefore discontinuance of CANH was lawful.6 1

2 3 4 5 6

PL v Sutton Clinical Commissioning Group [2017] EWCOP 22. See also Salford Royal NHS Foundation Trust v P [2017] EWCOP 23 in which Hayden J determined in a case wherein P was in MCS that it was not in P’s best interests to continue to receive CANH on the basis of evidence provided by her family as to her wish not to be kept alive in her circumstances. Ibid, paras 26–27. Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, [2014] AC 591. n1 above at para 29. Briggs v Briggs (No 2) [2016] EWCOP 53, [2017] 4 WLR 37. n1 above at para 78.

15.47 The Supreme Court decision in An NHS Trust v Y1 is considered below in the context of whether in all cases it is necessary to bring an application to court. It is however also important in the context of the diminishing importance of distinguishing between MCS and VS. In 2017, Y, who was in his fifties, suffered a cardiac arrest, resulting in several cerebral hypoxia and extensive brain damage. He did not regain consciousness and required CANH. The NHS Trust issued an application to the High Court, not to seek a declaration that it was in Y’s best interests to withdraw CANH, but rather to obtain a declaration that it was not mandatory to seek the court’s approval for withdrawal of the same, and no civil or criminal liability would result. Y passed away before the Supreme Court could consider the case but, given the importance of the issues raised, the Supreme Court determined the appeal should go ahead. Following analysis of Bland, the MCA 2005, Lambert, Briggs and In re M, as well as the relevant professional guidance, Lady Black re-stated the basic position with regard to medical treatment: ‘Although the concentration is upon the withdrawal of CANH, it must be kept in mind that the fundamental question facing a doctor, or a court, considering treatment of a patient who is not able to make his or her own decision is not whether it is lawful to withdraw or withhold treatment, but whether it is lawful to give it. It is lawful to give treatment only if it is in the patient’s best interests. Accordingly, if the treatment would not be in the patient’s best interests, then it would be unlawful to give it, and therefore lawful, and not a breach of any duty to the patient, to withhold or withdraw it.’2 Lady Black went on to consider the fact that it was decided, ‘as far back as the Bland case that CANH is in fact to be seen as medical treatment. It is not easy to explain, therefore, why it should be treated differently from other forms of life-sustaining treatment.’3 581

15.47  Withdrawal and Withholding of Treatment The difficulties in distinguishing between PDOC patients and others, in the context of bringing an application to court, were considered, with Lady Black concluding: ‘In all of these cases, the medical team take their decisions as to treatment, whether it is CANH, or some other form of treatment such as artificial ventilation or cardio-pulmonary resuscitation or the administration of antibiotics, by determining what is in the patient’s best interests.’4 1 [2018] UKSC 46. See also para 15.55 below on making an application to court as this case changed the approach in respect of bringing applications to court for individuals with PDOC. 2 Ibid, para 92. 3 Ibid, para 116. 4 Ibid, para 119.

15.48 These views as to diagnosis were advanced further in Rushton, where Hayden J was asked to determine whether it was in an 85-year-old patient’s best interests to withdraw CANH.1 There was no dissent that Mrs Rushton was in PVS. Hayden J, however, referred to the recently re-drafted RCP and BMA joint guidance, ‘Clinically-assisted nutrition and hydration (CANH) and adults who lack the capacity to consent’,2 in which it was noted that ‘the importance of obtaining a precise and definitive diagnosis has reduced.’ This guidance, as cited and endorsed by Hayden J, states: ‘The perceived importance of obtaining a precise and definitive diagnosis has reduced over time, as it is increasingly recognised, by clinicians and the courts, that drawing a firm distinction between VS and MCS is often artificial and unnecessary. In practice, when assessing best interests, information about the patient’s current condition and prognosis for functional recovery and the level of certainty with which these can be assessed is often more important than achieving a precise diagnosis.’3 An independent expert in neurorehabilitation who provided oral evidence at the trial indicated they were resistant to labelling Mrs Rushton as a patient in PVS as they were of the view that ‘what was truly required was a holistic evaluation of her best interests’.4 Hayden J placed significant weight on an advance decision made by Mrs Rushton which was held as indicative of her wishes and feelings in relation to withdrawal of CANH.5 Ultimately, it was determined that it was not in Mrs Rushton’s best interests to continue with CANH but that she should be moved to a hospice. 1

2

3 4 5

NHS Cumbria CCG v Rushton and Rushton [2018] EWCOP 41. For a case where the court considered the patient’s previously expressed wishes and feelings to support the decision to continue medical treatment, see, eg Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust v TG [2019] EWCOP 21, in which Cohen J considered TG’s Catholic faith and evidence that TG had previously expressed a view that life was for God to take away, no one else. Taking this evidence into account, Cohen J concluded that it was not in TG’s best interests to remove her endotracheal tube. Current guidance is BMA, Clinically-assisted nutrition and hydration (CANH) and adults who lack the capacity to consent: Guidance for decision-making in England and Wales (2018): see bit.ly/BMA-CANH-Guide. Different guidance was in place at the time of the Rushton decision. Ibid at p 50, cited at para 29 of Rushton. Rushton (n1) at para 29. This decision is considered in further detail in the context of advance decisions at para 15.58 on advance directives/prior consent.

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Withdrawal and Withholding of Treatment  15.49

‘Permanent’ VS 15.49 Whilst the emphasis on diagnosis has diminished, the Prolonged Disorders of Consciousness Guidelines continue to distinguish between VS and MCS. One of the reasons for doing so is that from a clinical perspective it is important to understand the extent to which an individual maintains awareness of their surrounding environment.1 From a legal perspective, the extent to which a person can experience positive or negative stimuli will factor into the best interests analysis and hence the insight the diagnosis gives to that will be of importance.2 Medicine is an inexact science and in relation to the continuance of any vegetative state, the Prolonged Disorders of Consciousness Guidelines note that best interests decisions will be based upon ‘best’ and ‘worst case’ scenarios for recovery, which inevitably contain a level of uncertainty, as these scenarios can only ever be predictions. It is however noted that the likeliness of recovery becomes clearer as more time passes. For any patient with PDOC, whether VS or MCS, where the patient remains in PDOC for more than a few months without any upward trajectory, that individual is likely to have severe permanent disability.3 Whilst recognising that late recovery always remains a possibility, the Prolonged Disorders of Consciousness Guidelines suggest that VS (or MCS) may be considered permanent only when a clinical judgment is made that a future recovery of consciousness is highly improbable. As a ‘rule of thumb’, permanent VS or MCS may only be diagnosed after the patient has been in chronic VS or MCS for at least six months in the absence of any measurable trajectory of change.4 The Prolonged Disorders of Consciousness Guidelines also provide details of clinical features which occur commonly, features which are compatible with the diagnosis but are atypical and features which are incompatible with the diagnosis and might suggest MCS. They warn that PVS patients may even display features which appear to reflect survival of ‘islands’ of cortex but which are no longer part of the coherent thalamo-cortical system required to generate awareness and so do not negate the diagnosis of VS, for example, utterance of a single inappropriate word or spontaneous stereotyped movements. Dame Butler-Sloss in An NHS Trust ‘A’ v Mrs ‘M’ and An NHS Trust ‘B’ v Mrs ‘H’ provided the helpful description given by an expert regarding the difference between Permanent Vegetative State and a Minimally Conscious State: ‘He said the way to look at this is, is there any evidence of a working mind, and that he was satisfied this was not a case of minimal awareness. There was no evidence in this case of a working mind but there were fragments of cortical activity at a reflex level and those fragments of cortical activity did not demonstrate any evidence in this case of a working mind …’5 1 2020 PDOC Guidelines, section 1.3, p 25. 2 See, for example, Guy’s and St Thomas’ Children’s NHS Foundation Trust v Knight [2021] EWHC 25 (Fam). This case concerned withdrawal of mechanical ventilation and life-sustaining treatment from a five-year-old child. As such, Poole J was not considering the statutory best interests test under MCA but still analysed in the child’s best interests. In particular, Poole J considered the impact of having no conscious awareness of one’s environment and the physical harm that could still be inflicted despite an absence of pain (at paras 75–90). Poole J determined it was in the child’s best interests to continue medical treatment. On appeal by the mother, the Court of Appeal upheld the Judge’s assessment and decision.

583

15.49  Withdrawal and Withholding of Treatment 3 4 5

The evidence accepted in Bland was that ‘if a PVS patient shows no signs of recovery after six months, or at most a year, then there is no prospect whatever of any recovery’. 2020 PDOC Guidelines, p 39. [2001] 2 FLR 501, [2002] 1 FCR 713.

15.50 The Prolonged Disorders of Consciousness Guidelines provide clinical criteria in relation to the diagnosis of VS which indicate that the following criteria are usually met by patients in a vegetative state. The three essential requirements for diagnosis are that there must be: ●● ●● ●●

no evidence of awareness of self or environment or the ability to interact with others; no sustained purposeful or voluntary behaviours either spontaneously or in response to visual, auditory, tactile or noxious stimuli; and no evidence of language comprehension or meaningful expression.

Typically there are cycles of eye closure and eye opening giving the appearance of a sleep–wake cycle (this being a feature that particularly distinguishes VS from coma)1 and there is spontaneous respiration and circulation. Although the specific diagnosis reached is now less important in terms of likely outcome resulting from an application to court, it remains vitally important to provide detailed evidence to the court concerning the patient and in particular the importance of reports from the clinicians and nurses in day-to-day contact with the patient.2 1 Coma being a state of absent wakefulness and absent awareness lasting more than 6 hours where a person cannot be awakened, fails to respond normally to painful stimuli, light or sound and has no sleep-wake cycle. 2020 PDOC Guidelines, p 25. 2 See, eg A Clinical Commissioning Group v AF [2020] EWCOP 16. Although this case did not involve a patient in MCS or PVS (indeed, AF was sentient), Mostyn J was required to consider whether CANH should be removed. Evidence was heard from both AF’s daughter as to AF’s previous wishes and feelings as well as evidence from care staff as to AF’s current responses to external stimuli such as music and poetry. Despite the evidence from AF’s daughter as to AF’s previous wishes and feelings, Mostyn J concluded that AF was able to derive pleasure and satisfaction from his life, even in his diminished state.

Diagnosis of a minimally conscious state 15.51 MCS is a state of severely lowered consciousness where the very minimal responses indicate the person has some degree of interaction with their surroundings that is above the level of reflexive behaviours. The Prolonged Disorders of Consciousness Guidelines provide that for the diagnosis of MCS there must be limited but clearly discernible evidence of self-awareness or environmental awareness on an inconsistent but reproducible or sustained basis shown by one or more of the following: ●● ●● ●● ●●

following simple commands; gestural or verbal yes/no responses – regardless of inaccuracy; intelligible verbalisation; purposeful or discriminating behaviours that are contingent on environmental stimuli and are not reflexive activity.

Although the borders of diagnostic categories are hard to define, a patient will be considered to have emerged from MCS when they show reliable and consistent responses such as functional communication or functional use of objects. 584

Withdrawal and Withholding of Treatment  15.52 The previous 2013 PDOC Guidelines suggested that MCS may be considered ‘permanent’ between three to five years post-injury. The most recent guidelines, however, align with the recent shift in the law and emphasise that the focus should be on whether a patient could ever recover a quality of life that the individual would personally value.1 The Guidelines also indicate that the trajectory of change is ‘increasingly emerging as the most important indication of prognosis for recovery of consciousness.’2 It is noted that this highlights the importance of serial testing over time. Importantly, however, best interests decisions should not be delayed until an individual is considered to be in ‘permanent’ MCS (or VS) but rather whenever a treatment decision is made.3 1 2 3

2020 PDOC Guidelines, p 36. Ibid, p 35. Ibid, p 37.

Summary 15.52 Recent case law, read in conjunction with the court-endorsed RCP/ BMA guidance (as well as the more recently updated PDOC guidelines), affirms the trend towards a focus on an individual’s autonomy, independence, dignity and integrity, rather than on the specific diagnosis. The approach the court will take in assessing whether it is in a patient’s best interests to continue or withdraw CANH will be determined by a holistic approach to the statutory test of best interests as set out in s 4 of the MCA. Notwithstanding this shift, the primary principles set forth in Bland remain good law. The legality of the withdrawal of feeding in Bland was resolved by analysing whether the doctor should or should not continue treatment and not by an assessment of whether the doctor should take a course which in fact causes or accelerates the patient’s death.1 Not continuing feeding is an omission, not an act. Criminal liability for the consequence of an omission to act can arise only when there is a duty to act. Where it has been determined that continuation of treatment is no longer in the patient’s best interests, there is no continuing duty to act; that is, there is no duty on the doctors to continue feeding. Thus, if death follows a failure to feed, that death is not the criminal (or civil) responsibility of the doctor: the cause of the death is legally the original disease or trauma which caused the vegetative state. The recent shift in emphasis recognises that, despite the futility of ongoing treatment, some patients may have ascertainable, previous strongly-held beliefs that they would wish to continue receiving treatment even in PVS. As such, the distinction between a patient in PVS and MCS is arbitrary; instead the focus must be on determining whether the continuation or withdrawal of treatment (including clinically assisted nutrition and hydration) is in accordance with their best interests, applying s 4 of the MCA. 1

Lord Mustill felt it was not a question of whether the patient’s best interests are in terminating life: it has to be a question of whether continued treatment is in the best interests of the patient.

585

15.53  Withdrawal and Withholding of Treatment

D  ROLE OF THE FAMILY 15.53 The courts have a duty to consider the views of anyone engaged in caring for the patient or interested in their welfare.1 This duty will incorporate the views of family members, where such views exist. The courts have recognised that not only have they the right to be heard as the patient’s family, but also they may be in the best position to convey what the wishes of the patient themselves might have been. Hayden J has commented that he: ‘… cannot over-emphasise the importance of listening to the family who ultimately know the patient’s personality best. That is not to say that their wishes and views should be determinative, but it is extremely important that they are heard and their observations given appropriate weight.’2 Unfortunately, it has been suggested that family experience of the court process when an application is made for withdrawal of clinically assisted nutrition and hydration is not predominantly positive.3 The Prolonged Disorders of Consciousness Guidelines set out: ‘Involvement of friends and family ‘Families and close friends play a key role in the assessment and diagnosis of patients with DOC because they are often present over prolonged periods and because many patients respond at an earlier stage with familiar people. Family members may often see responses that the team do not but, on the other hand, they may sometimes interpret simple reflexive movements as more purposive interactions. They need to be fully consulted and involved in the assessment process and provided with information and support from clinicians who can explain what behaviours to look for. ‘There are several ways to involve family members in the formal assessment process (if they so wish): – – –

–

They may be actively involved during formal and informal assessments by the team to observe the patient’s responses to a familiar face or voice. It is often helpful to ask them to use videos to record their interactions outside of formal sessions. Tools such as the Wessex Head Injury Matrix (WHIM) or Coma Recovery Scale-Revised (CSR-R) can be used as a structured framework for interview to record their observations, so that these can be reviewed and interpreted by the clinical team. The SMART-INFORMS presents a structured framework interviewing and documenting the observations of families and friends, and informs the SMART assessor where it is necessary to investigate their observation jointly with the family/team in context.’4

Care should be taken to note any information family members and friends have concerning the patient’s previously expressed wishes about what they would want to happen should they be in a vegetative or minimally conscious state. The Official Solicitor’s representative may interview the family members and others close to the patient, sometimes when the representative visits the patient, providing that these people are willing to be interviewed.

586

Withdrawal and Withholding of Treatment  15.54 Whilst it is good practice for the doctor to consult relatives, their views are not determinative: as stated by Lord Goff of Chieveley in Bland, their Lordships were: ‘firmly of the opinion that the relatives’ views cannot be determinative of the treatment.’5 This view flows inevitably from the approach of English law to the incapacitous adult: no one has power to consent on behalf of an incapacitous adult. Unless a family member has a relevant lasting power of attorney (‘LPA’) or deputyship, it is the senior clinician in charge of the patient’s care who holds responsibility for treatment decision-making, subject, of course, to any relevant decision of a court.6 All questions of the continuation or discontinuation must be assessed, whether by doctors or finally by the courts, on the basis of the best interests test. Save for those empowered under the MCA to take substituted decisions, no individual – no matter how closely related – can override that determination. If the clinical team dispute that an individual holding a relevant LPA or deputyship is acting in the best interests of the patient, the clinical team should first seek to resolve the issue informally. If agreement cannot be reached, or doubt persists, an application should be made to the Court of Protection.7 1 2 3

Section 4(7)(b) of the MCA. Cumbria NHS Clinical Commissioning Group v Miss S [2016] EWCOP 32. Kitzinger and Kitzinger: Court applications for withdrawal of artificial nutrition and hydration from patients in a permanent vegetative state: family experiences’, 20 October 2015, Journal of Medical Ethics; in the context of hearings taking place remotely, see C Kitzinger, Remote justice: A family perspective, 29 March 2020, available at www.transparencyproject.org.uk/ remote-justice-a-family-perspective/. 4 2020 PDOC Guidelines at p 43. See also British Medical Association, Clinically assisted nutrition and hydration (CANH) and adults who lack the capacity to consent: Guidance for decision-making in England and Wales, updated 8 September 2020, at pp 8–9 and at p 24, available at https://www.bma.org.uk/canh. 5 [1993] AC 789 at 871. 6 See Royal College of Physicians and BMA, Clinically-assisted nutrition and hydration (CANH) and adults who lack the capacity to consent: Guidance for decision-making in England and Wales (September 2020), at section 2.3. 7 2020 PDOC Guidelines at p 104, para 4.5.2.

15.54 The role of the family is often crucial in providing the court with information relevant to s 4(6) of the MCA about the patient’s premorbid character, beliefs and values, including relevant expressions of wishes about attitudes towards being given intrusive life-preserving treatment in the face of severe disability. Such information from the family can be strongly influential upon the outcome; for example, in St George’s Healthcare v P & Q,1 where on declaring that it was lawful for renal-replacement therapy for a man in MCS to continue, Newton J noted that: ‘… it became clear that the basis for the application to withdraw treatment was not the futility of the treatment but the treating team’s belief that continued treatment was not what P would want … In looking at those aspects and as to whether or not P would assess his life as being regarded as worthwhile I attach far more weight to the relevant expressions of his articulate and well informed family members and friends who have direct knowledge of P’s pre-injury knowledge, understanding and philosophy, in particular those who know about his beliefs and values … In the light of his previously expressed strong views, coupled with his strong religious beliefs, the weight of the evidence all falls heavily to one side which is that the 587

15.54  Withdrawal and Withholding of Treatment preservation of any life would be considered by P to be of significant value. His present circumstances are a life which P would find worthwhile, even though I entirely accept many others would not adopt the same position.’ In Royal Bournemouth and Christchurch Hospitals NHS Trust v TG,2 the patient had suffered extensive brain damage and was intubated and ventilated. The matter came to the court approximately two months after the injury. The medical evidence indicated that the patient’s best outcome would be an awareness of pain with a very low minimally conscious state. The professional consensus, including that of the independent expert, was that it was in the patient’s best interests to discontinue ventilation. The patient’s family, however, believed that the patient could respond to people close to the patient and to prayers. The patient was a devout Catholic. After carrying out a best interests analysis, and citing Lambert and Briggs, Cohen J concluded that the patient would have wished for continuance of life. Although this case arguably does not represent a straightforward PVS case – the permanence of a vegetative state cannot be concluded until six months post-injury – it provides an example of how the court is likely to now respond to the views provided by the family. As the Prolonged Disorders of Consciousness Guidelines emphasise, family members and other people who have a close emotional attachment to the patient should be identified and involved as part of the decision-making process.3 However, it must be made clear that they are being asked primarily for their views as to what the patient themselves would have wanted in the circumstances and not their view on what should happen. 1 2 3

[2015] EWCOP 42, [2015] Med LR 463. [2019] EWCOP 21. See 2020 PDOC Guidelines, pp 22, 43. At p 22, the Guidelines remind clinicians that ‘family’ may include anyone with a sufficiently close relationship with the patient; it need not be limited to blood ties.

E  IS AN APPLICATION TO COURT REQUIRED? 15.55 Prior to the decision in An NHS Trust v Y,1 it was considered usually necessary to make an application to the Court of Protection before discontinuance of feeding or hydration in a person within PVS or MCS, although some judicial opinion had been expressed to the contrary.2 The Supreme Court has now definitively stated that in certain circumstances it will not be necessary to make an application to court. In any event, in relation to an adult, a court can merely declare that a given course of treatment or withdrawal of treatment would be lawful. As such, the absence of court approval does not render the withdrawal of treatment unlawful.3 See in particular the Guidance of the Court of Protection in January 2020 as to whether and when applications should be made.4 1 2

[2018] UKSC 46. Re Briggs (Incapacitated Person) [2017] EWCA Civ 1169; in considering the correct approach to take in respect of court applications, King LJ stated (albeit obiter) [emphasis added]: ‘If the medical treatment proposed is not in dispute, then, regardless of whether it involves the withdrawal of treatment from a person who is minimally conscious or in a persistent vegetative state, it is a decision as to what treatment is in P’s best interests and can be taken by the treating doctors who then have immunity pursuant to section 5 MCA.’ See also M v A Hospital [2017] EWCOP 19, decided shortly following Briggs, in which Peter Jackson J

588

Withdrawal and Withholding of Treatment  15.56 concluded that decisions concerning withdrawal of treatment for patients in PVS/MCS did not require an application to the court, in part on the basis that ‘these cases [are not] so different in kind to other serious medical treatment decisions as to justify a completely different approach’ (at para 37(2)(ii)) and see para 15.59 below. 3 See Chapter 6: Going to Court. 4 See Applications relating to medical treatment: guidance authorised by Hayden J, the Vice President of the Court of Protection [2020] EWCOP 2: see bit.ly/VP-Guide-Jan-20.

When court approval is required to withhold nutrition and hydration 15.56 As set out above, the three key factors identified by the European Court as necessary for the lawfulness of withdrawal of life sustaining treatment are:1 (i) (ii) (iii)

the Member State’s domestic law and regulatory framework must be compatible with the requirements of Art 2; account must be taken of the patient’s previously expressed wishes and those of people close to them, and to medical professionals; there must be a possibility of approaching the courts in the event of doubts as to the best decision to take in the patient’s best interests.

In Gard v UK, the European Court of Human Rights concluded that these three features are present within the UK’s domestic law and regulatory framework.2 This was recognised by the Supreme Court in An NHS Trust v Y.3 First, the MCA itself provides a basic protective structure, which is strengthened when combined with the Mental Capacity Act Code of Practice and the professional guidance. This domestic framework enables clinicians to take a decision to withdraw or withhold treatment without the need to refer the matter to court. Section 4 of the MCA itself satisfies the second requirement (providing the decision making process is done in accordance with the principles of the MCA). The domestic structure is further supported by the opportunity to involve the court, which will inevitably be required if a dispute has arisen and cannot be resolved.4 More recently, the Vice President of the Court of Protection issued Practice Guidance5 to assist practitioners in identifying when a matter ought to be referred to court. This Guidance, which replaces the now-revoked Practice Direction 9E,6 clarifies that where: (a) (b) (c) (d)

an issue is finely balanced; there is a difference of medical opinion; there is a lack of agreement as to a proposed course of action from those with an interest in the patient’s welfare;7 or there is a potential conflict of interest on the part of those involved in the decision-making process,

it is ‘highly probable’ that an application to the Court of Protection will be appropriate and, ‘in such an event, consideration must always be given as to whether an application to court is required.’8 The above list is not exhaustive but it follows that where all relevant parties are in agreement that it is in P’s best interests to withdraw CANH, and the medical evidence supports this position, an application is likely to be unnecessary. 589

15.56  Withdrawal and Withholding of Treatment 1 Lambert v France [2016] EHRR 2. See para 15.25 above. 2 Gard v UK Application No 39793/17. 3 See An NHS Trust v Y [2018] UKSC 46 at paras 105–109. 4 At para 109. This opportunity is available whether or not a dispute is apparent but the circumstances in which referral to the court is likely to be required are set out within the Applications relating to medical treatment: guidance authorised by Hayden J, the Vice President of the Court of Protection [2020] EWCOP 2: see bit.ly/VP-Guide-Jan-20 at para 8 (eg lack of agreement, difference of medical opinion, conflict of interest or finely balanced issues). 5 See Applications relating to medical treatment: guidance authorised by Hayden J, the Vice President of the Court of Protection [2020] EWCOP 2. 6 Applications relating to medical treatment: guidance authorised by Hayden J, the Vice President of the Court of Protection [2020] EWCOP 2 is intended to fill the gap between the revocation of Practice Direction 9E and an awaited revision to the Mental Capacity Act Code of Practice, the latter of which was identified in An NHS Trust v Y at para 97 as previously being ‘rather ambiguous’ in its guidance on bringing an application to the Court of Protection in cases of serious medical treatment. See also para 1 of the Practice Guidance. 7 A category of people which may extend beyond family and treating clinicians. In A Clinical Commissioning Group v P and TD [2019] EWCOP 18, an application was made to court even though there was unanimity between the applicant CCG, the Official Solicitor and P’s family that it was in P’s best interests to withdraw CANH, because of the views expressed by staff caring for P on a daily basis in a nursing home. McDonald J found that the staff’s selfdescribed ‘pro-life’ views were contrary to the views of P expressed before they lost capacity. 8 Applications relating to medical treatment: guidance authorised by Hayden J, the Vice President of the Court of Protection [2020] EWCOP 2: see bit.ly/VP-Guide-Jan-20 at para 8.

15.57 Notwithstanding the above, clinicians continue to face the small risk of professional1 or even criminal2 censure in the absence of a prior court declaration. Pro-life pressure groups and individuals are keen to challenge any perceived attacks on the sanctity of life. Following the death of Anthony Bland, the Reverend James Morrow sought privately to prosecute the treating clinician for murder. Given the court’s advance declaration that withdrawal was lawful, the magistrates refused to issue a summons on the information laid by the private individual. This decision was upheld by the Divisional Court. Staughton LJ indicated that the guidance in Bland should inhibit prosecution or if the matter went ahead the ruling of the House of Lords would be an answer to prosecution. It is thus understandable that clinicians may be hesitant to withdraw clinically assisted nutrition and hydration from a patient in the absence of a court declaration. Certainly, in the event that the court has declared the withholding of clinically assisted nutrition and hydration from a patient as lawful, the risk of being faced with a prosecution for murder or with disciplinary proceedings will be drastically reduced. If the Guidance is followed rigorously, it is probable that such risks will not eventuate. The law as it stands, as supported by relevant professional guidance,3 envisages decisions being made outside court where all parties agree and there is a medical consensus. Such decisions must take place following consultation with the family. In the event of a dispute, the matter must be referred to court. It is therefore unlikely that, following carefully documented consultation with the patient’s family and agreement being reached between all parties, the decision would thereafter be criticised. Further, it is recognised that bringing every case to court would result in practical difficulties.4 One scenario in which difficulty could potentially arise is if an individual is not consulted. If there is a familial dispute, for instance, and medical professionals are not told of a family member’s existence and are therefore unaware that this 590

Withdrawal and Withholding of Treatment  15.58 individual ought to be consulted, the unknown family member could seek to challenge the decision at a later stage. It can be difficult to ascertain those with a sufficient interest in the individual’s welfare. The BMA guidance suggests asking those who are closest to the patient if there is anyone else who should be consulted, and asking those who have been consulted whether there is anyone else who may hold a view different to their own. This may include not just family members but also friends, carers, colleagues or associates.5 It should also be remembered that ‘best interests’ connotes acting in accordance with a Bolam responsible body of opinion. In the event of a subsequent challenge to a decision to withdraw CANH, the court may consider the decision-making process from this perspective. In other words, did the decision-maker act in accordance with a Bolam body of opinion in their consultation and best interests analysis? Extensive guidance now exists to support clinicians in making these decisions. It is emphasised that where in doubt, the opportunity to refer to the Court of Protection remains. Finally, it should also be noted that where an individual is in PVS and MCS (or is otherwise physically unable to leave hospital), the proper pathway for issuing proceedings in the Court of Protection is likely to be via s 16 of the MCA, rather than s 21A.6 1 For example, the suspension by the General Medical Council of a GP for failing to listen to nurses and consult colleagues in relation to the withdrawal of nutrition from an elderly patient (March 1999). 2 For example, note the acquittal of a doctor prosecuted following the death of an elderly patient after pain-relieving morphine had been administered. 3 See 2020 PDOC Guidelines at p 43. See also British Medical Association, ‘Clinically assisted nutrition and hydration (CANH) and adults who lack the capacity to consent: Guidance for decision-making in England and Wales’, updated 8 September 2020. 4 An NHS Trust v Y [2018] UKSC 46 at [111], Lady Black considered it would be ‘prescriptively burdensome’. 5 See BMA Guidance, n3 above at p 67 (Appendix 1). See also pp 24, 31–33. 6 Re Briggs [2017] EWCA Civ 1169 confirms that the principle established in R (on the application of Ferreira) v HM Senior Coroner for Inner South London [2017] EWCA Civ 31 applies, ie ‘the question of deprivation of liberty does not arise where a person who lacks capacity is so unwell that they are at risk of dying if they were anywhere other than in hospital and therefore, by virtue of their physical condition, they are unable to leave the hospital’ (Briggs at para 106). As such, applications under s 21A are likely to be inappropriate for an individual in MCS or PVS.

Advance decisions/prior consent 15.58 Can a patient consent in advance to the withdrawal of feeding and hydration? Limits are placed by law on an individual’s power to consent to actions which will injure them or which are otherwise morally unacceptable. Under English law a person does not have full autonomy to allow someone to assault their person: moral limits are set.1 A doctor is not entitled to kill someone merely because they consent to be killed. For that reason, where a patient is able to be fed orally then offering food and drink to them is seen as basic care: whilst such food and drink can be refused at the time it is offered, any advance refusal of orally consumed food and drink has no force.2 However, in law, clinically assisted nutrition and hydration is seen as ‘treatment’ and as such is approached differently from oral intake. The principle that an unconscious or incapacitous person should not have to be subjected to what a rational and conscious person would reject provides an 591

15.58  Withdrawal and Withholding of Treatment answer. Just as with other forms of medical treatment, a capacitous adult is able to refuse consent to artificial hydration and feeding. In Secretary of State for the Home Department v Robb3 a prisoner of sound mind and understanding went on hunger strike. The Home Office, prison officials, physicians and nursing staff responsible for the respondent’s care could lawfully observe and abide by the refusal to receive nutrition and could lawfully abstain from providing hydration and nutrition. The Home Secretary was not under any duty to prolong the respondent’s life. Thus, if in advance a capacitous individual indicates by way of a validly made advanced decision that, should they deteriorate to a vegetative (or minimally conscious) state, they do not consent to the continuation of artificial feeding or hydration, that wish should be given effect. However, to be effective the advance decision must: 1 2 3

be in writing (it can be written by someone else or recorded in healthcare notes); be signed and witnessed;4 and state clearly that the decision applies even if the author’s life is at risk.5

Healthcare professionals will be protected from liability if they: ●●

●●

treat a person because, having taken all practical and appropriate steps to find out if the person has made an advance decision to refuse treatment, they do not know or are not satisfied that a valid and applicable advance decision exists;6 stop or withhold treatment because they reasonably believe that an advance decision exists, and that it is valid and applicable.7 In order to establish whether an advance decision is valid and applicable, healthcare professionals must try to find out if the person: –– has done anything that clearly goes against their advance decision; –– has withdrawn their decision; –– has subsequently conferred the power to make that decision on an attorney;8 –– would have changed their decision if they had known more about the current circumstances.9

It is likely self-evident that what constitutes ‘all practical and appropriate steps’ will be dependent upon the facts of each case. Some guidance may, however, be derived from Hayden J in Rushton: ‘Where advanced decisions have been drawn up and placed with GP records there is an onerous burden on the GP to ensure, wherever possible, that they are made available to clinicians in hospital. By this I mean a copy of the decision should be made available and placed within the hospital records with the objective that the document should follow the patient. It need hardly be said that it will rarely, if ever, be sufficient to summarise an advance decision in a telephone conversation.’10 In any event, it is advisable in all circumstances to seek a declaration from the court in relation to the validity and application of any advance directive prior to discontinuance in order to ensure the legal validity of the patient’s advanced expression. 592

Withdrawal and Withholding of Treatment  15.59 The General Medical Council’s guidance ‘Treatment and care towards the end of life: Good practice in decision-making’ states that doctors ‘must make a record of the discussion and the decisions made. You should make sure that a record of the advance care plan is made available to the patient, and is shared with others involved in their care (provided that the patient agrees), so that everyone is clear about what has been agreed’.11 There may, of course, also be cases where a patient’s recorded wish to continue receiving nutrition and hydration will fall to be considered by the courts. Whilst it is not possible for a patient to dictate what treatment they have (at any point), given the shift in the direction of the law towards greater consideration of the particular patient’s autonomy discussed above, any advance expression of such wishes and preferences will be considered in all withdrawal of treatment cases. 1

2 3 4 5 6 7 8 9 10 11

R v Brown [1993] 2 WLR 556 considered whether consent by the victim could amount to a defence to a charge of assault in relation to certain sado-masochistic practices. It was held that it was not in the public interest that a person should wound or cause actual bodily harm to another for no good reason and, in the absence of such a reason, the victim’s consent afforded no defence to a charge. See Chapter 1: Consent – General, para 1.9. See the General Medical Council’s Guidance Treatment and care towards the end of life: Good practice in decision-making (2010) www.gmc-uk.org/guidance at p 52. [1995] Fam 127, [1995] 1 FLR 412, [1995] 1 All ER 677 per Thorpe J. MCA, s 25(6): see Appendix 1: Mental Capacity Act 2005. Section 25(5)(a). See Chapter 2: Consent & Capacity, paras 2.32–2.38 for a detailed discussion of the applicable principles and case law. Sections 24–26; and Chapter 9 of the MCA Code. Section 26(3). Section 25(2). Section 25(4). NHS Cumbria CCG v Rushton [2018] EWCOP 41 at para 26. www.gmc-uk.org/guidance. In force from 1 July 2010. See p 35, para 61.

F  APPLICATION TO COURT 15.59 The first stage before making any application to court for withdrawal of feeding and hydration is to consider whether the patient expressed any wishes about how they wished to be treated in this situation. Is there a living will or any form of advance decision? The next stage is to consult the family and determine their wishes and – more importantly – to find out what evidence they can give about the wishes and values of the patient. The Prolonged Disorders of Consciousness Guidelines1 advise that the process of holding formal best interests meetings with family and close friends should have commenced within four weeks of the onset of coma/ prolonged disorders of consciousness. Further meetings should be planned at reasonable intervals or when new decisions need to be made. These meetings should provide a forum for continued communication and information-sharing with the family when difficult issues such as the withdrawal of life-preserving interventions are to be considered. Importantly, if a patient’s condition has not improved within six months, the patient may be diagnosed as being in PVS/MCS. Within four weeks of such diagnosis, a further formal best interests meeting should take place. It is occasionally the case that there is no identifiable family member who can provide evidence in respect of the patient’s wishes and beliefs. These circumstances more frequently arises in cases where there is an underlying 593

15.59  Withdrawal and Withholding of Treatment mental health condition.2 Where evidence from family members is not available, efforts should be made to identify any friend or other person who might be able to give reliable evidence as to the patient’s wishes and beliefs. The timing of any court application should be managed sensitively. Time should be given to the family to come to terms with the determination that the patient will not recover. If the family’s agreement to discontinuance is initially not forthcoming, it is suggested that a period of time is allowed before a decision is taken whether to force the issue to a court hearing. The Official Solicitor should be contacted as soon as it is known that an application to court is contemplated in order that steps can be initiated as soon as possible to instruct an independent expert to examine the patient and provide a report. Any independent expert will need full copies of the patient’s medical and care records, which can take time to obtain.3 Such early notice may prove crucial should circumstances suddenly change, as a result, for example, of an inability to maintain feeding, and an urgent application to court be required. Contact details for the Official Solicitor are set out within the 2020 Practice Guidance.4 Until 2020, the Official Solicitor had generally been unable to operate out of hours, but an out of hours cover is now maintained. The first recent case with the Official Solicitor appointed on an out of hours basis occurred in June 2020.5 Notwithstanding this welcome development, ‘out of hours’ applications should continue to be treated as exceptional.6 The parties must include the relevant health authority or NHS Trust,7 which will often be expected to act as the applicant.8 The parties will also often include the next-of-kin or other individual closely connected with the patient, and this is particularly so where there is any disagreement with what is proposed by the treating team. However, given that there is no automatic public funding for family members in such cases,9 it is often the position that a family who are in agreement with the application do not wish to be formally made a party to the proceedings. They might nevertheless attend court, be given relevant documents and provide witness statements.10 1 2020 PDOC Guidelines, p 78. 2 See for example those cases involving applications to limit treatment in patients suffering from anorexia (A NHS Trust v X [2014] EWCOP 35) or applications in relation to those suffering delusional beliefs (Re SB [2013] EWHC 1417 (COP)). 3 Where the patient is thought to have been in PVS for many years, so it is possible that records may only be needed to cover a particular time span, it is suggested that this is discussed with the Official Solicitor and/or the expert once identified. 4 At the time of writing, these are listed as telephone 020 3681 2751, email: oswelfarereferrals@ ospt.gov.uk. In urgent cases, a phone call should be made to alert a lawyer in the healthcare and welfare team: see 2 Applications relating to medical treatment: guidance authorised by Hayden J, the Vice President of the Court of Protection [2020] EWCOP 2 at para 15. 5 Barnsley Hospital NHS Foundation Trust v MSP [2020] EWCOP 26. 6 Applications relating to medical treatment: guidance authorised by Hayden J, the Vice President of the Court of Protection [2020] EWCOP 2: see bit.ly/VP-Guide-Jan-20 at para 16. 7 Re S (Hospital Patient: Court’s Jurisdiction) [1996] Fam 1, CA. 8 See n5 above at paras 3 and 13. 9 Non-means tested funding under s 21A is not available in serious medical treatment cases. See further commentary below. An application should be made under ss 15–17 of the MCA, seeking a decision pursuant to s 16 of the MCA: In Re Briggs [2017] EWCA Civ 1169 at para 92. See further para 15.56 above. 10 See Chapter 6: Going to Court.

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Withdrawal and Withholding of Treatment  15.60

Confidentiality 15.60 In accordance with the practice direction, and as with all serious medical treatment cases, hearings before the court in PVS and MCS cases will invariably be held in public, with appropriate reporting restrictions in place.1 Although the court may order that the whole or part of any hearing is to be held in private,2 until remote hearings became a necessity as a result of the Covid-19 pandemic, this was very rarely ordered given the overwhelming interest in the public being fully appraised of the basis upon which such serious decisions are made by the court. It is yet to be seen whether remote hearings will continue and, if so, whether they will largely be held in private, as a hybrid or in public with transparency orders in place. In the authors’ experience, many remote hearings are being held in private but there is no specific reason why the public cannot attend a remote hearing, so long as appropriate safeguards (such as a transparency order, which is explained to the attendee at the start of the hearing) are in place. Many members of the public have been able to attend such hearings to date.3 In any event, the court also has power to: (a) (b) (c) (d)

authorise the publication of information about a private hearing; authorise persons to attend a private hearing; exclude persons from attending either a private or public hearing; or restrict or prohibit the publication of information about a private or public hearing.4

Thus: ●● ●●

the court may preserve the anonymity of other parties to the litigation, if necessary to avoid the risk of identification of the patient; orders preserving the anonymity of the patient are capable of extending beyond the death of the patient until any successful application to have them discharged.

However, it must be stressed that any coroner’s inquest will be conducted in open court and the ‘usual’ order in the Court of Protection will not extend the reporting injunction to the Coronial Inquest. The family should be made aware of this when an application for a declaration is being made. Where the source of the initial brain injury has been a violent or unnatural one then an inquest is likely to be required under s 1(2) Coroners and Justice Act 2009. However, where a naturally occurring disease or condition has led to the disorder of consciousness then a subsequent inquest is unlikely.5 Where circumstances so require, however, the injunction can not only be extended beyond the subject’s death, but can effectively prevent the publication of the fact that the death being inquired into at an inquest is that of the same person with whom the Court of Protection proceedings were concerned. In the infamous case of Mrs C6 there was what Charles J described as press ‘reporting that engaged the prurient interest of the public in the personal details of the lives of others, rather than the public interest in important issues relating to [the court’s finding of capacity to decide and its consequences]’. The impact of this media attention upon Mrs C’s child led the judge to endorse a form of reporting restrictions order that not only persisted after Mrs C’s death, but also prohibited the reporting of anything from her subsequent inquest which would directly or indirectly reveal that the deceased was the same person as 595

15.60  Withdrawal and Withholding of Treatment the anonymous patient with whom the Court of Protection proceedings had been concerned.7 1 See Chapter 6: Going to Court. Withdrawal of treatment applications in PVS and MCS have invariably been held in public since the inception of the MCA, even before the move towards increased transparency in the Court of Protection. 2 Ibid. 3 See generally the Open Justice Court of Protection Project’s website, https:// openjusticecourtofprotection.org/about/, which has a running list of cases which may be observed remotely. For guidance on joining remote hearings, see also www.transparencyproject. org.uk/how-to-observe-remote-hearings-in-the-court-of-protection/. 4 Practice Direction 4A – Hearings (Including Reporting Restrictions) Court of Protection Rules 2017 at para 1. At the time of writing, further guidance is in place regarding the conduct of remote hearings as a result of the Covid-19 pandemic: www.judiciary.uk/you-and-thejudiciary/going-to-court/family-law-courts/court-of-protection-guidance-covid-19/. 5 Although some discretion of the coroner remains if they have reason to think an inquest is necessary under s 4(1)(b) of the CJA 2009. 6 Re Kings College Hospital NHS Foundation Trust v C & V [2015] EWCOP 80. 7 Re C Deceased; V v Associated Newspapers Ltd [2016] EWCOP 21.

Evidence 15.61 In Bland the Law Lords emphasised that the patient’s lack of consciousness and absence of any prospects of recovery had been ‘overwhelmingly proved’. Convincing and detailed evidence must be produced to the court which demonstrates that there is no benefit to the patient in their continued existence. Statements/reports should be obtained from the treating clinician and from those in the nursing staff with closest daily contact with the patient. If possible, statements should also be obtained from material family members. The medical and nursing notes should be available and any entries which might be interpreted as indicating awareness must be explained. The applicant should ensure that the RCP National Clinical Guidelines in PDOC have been followed and that the necessary checklists in the electronic annexes have been completed. The Guidelines recommend that two out of the three possible assessments are carried out, but in Cwm Taf University v F1 Newton J suggested that a court application may require the more rigorous SMART assessment as a general rule: ‘Ideally the guidance suggests that at least two of those assessments should be carried out (the WHIM, the CRSR or the SMART) in support of any application made to the Court of Protection. Additionally, where assessments are to be used in support of an application to the court to withdraw treatment as life sustaining therapy or treatment, a SMART assessment should also be used.’ 1

[2015] EWHC 2533 (Fam).

15.62 Before making any application to withdraw life sustaining treatment from a patient in a PDOC, the applicant should generally obtain a report from an independent expert in neuro-rehabilitation who is also expert in interpreting structured assessments such as SMART. An applicant should call the Official Solicitor well in advance to discuss which expert should be instructed. Where a joint instruction takes place after commencement of proceedings this will be led by the Official Solicitor, usually co-funded by all parties.1 If the case raises particular complications of diagnosis and in particular if it falls outside the Prolonged Disorders of Consciousness Guidelines, the court may permit 596

Withdrawal and Withholding of Treatment  15.64 parties to seek a second independent expert opinion; in M v Mrs N, there were three separate independent experts in neuro rehabilitation who all provided reports and gave evidence. The expert neurological assessments should:2 ●● ●● ●● ●● ●●

be undertaken separately; involve consultation with clinical and nursing staff, relatives and carers; involve consideration of the patient’s medical and care home records; involve a formal neurological examination, preferably undertaken in the presence of nursing staff and relatives who have had the opportunity to observe the patient over a prolonged period. consider results of the structured assessment techniques.

1

Save that family members who are a party but do not benefit from public funding are unlikely to be ordered to pay a portion of the independent expert’s costs. 2 Derived in large measure from the Official Solicitor’s excellent expert instructions in Re D (9 November 2000, unreported per Johnson J).

15.63 Both factual and expert evidence should be obtained, addressing the following issues: ●● ●● ●● ●● ●● ●● ●● ●● ●● ●●

●● ●● ●●

Has the patient made any relevant and applicable advanced decision? What is known regarding the patient’s previously expressed views, wishes and feelings relevant to their condition and/or the discontinuance of treatment? What is known regarding the patient’s underlying beliefs and values, including but not exclusively religious views? What is the history of the patient’s condition? What is their current condition? What benefit is likely from any treatment? What rehabilitative steps have been taken and what impact would any such steps in the future have? What is the diagnosis? What imaging techniques have been undertaken (if any) and what imaging (if any) is proposed? What are the views concerning the proposed discontinuance of: –– the treating clinician? –– the nursing staff? –– the family? How is any discontinuance of feeding/hydration going to be effected? If requested, why is a confidentiality order required in the terms requested? What steps are being taken to offer counselling to relatives and staff?

15.64 In particular, care should be taken to ensure that the experts address the following questions: ●● ●● ●● ●● ●●

Is there any evidence of awareness of self or environment? Is there any prospect of improvement in the patient’s condition? Does the patient meet the criteria for diagnosis of PVS or MCS set out by the Prolonged Disorders of Consciousness Guidelines? [and if not, specify why]. Are there any comments concerning the patient’s current medication (if any) and in particular is it possible that such medication may be (or may have been) masking or dampening signs of awareness? What are the risks/benefits of withdrawing any such medication? 597

15.64  Withdrawal and Withholding of Treatment ●● ●● ●● ●●

How long will the patient survive in their current state? How long would the patient survive if hydration and feeding were to be withdrawn? Is it – in the expert’s clinical judgement – appropriate to discontinue artificial nutrition and hydration? Are there any recommendations concerning treatment and nursing care at such time?

All sources of information must be assessed before a final diagnosis of PVS should be considered. Often family members can describe patients as appearing to ‘suffer’: for the hospital, a clear response to this is required, explaining why the signs and symptoms viewed as ‘suffering’ are not in fact indicative of any underlying awareness. 15.65 Where the applicant does not obtain such evidence in advance of the application, the hearing of the substantive application is likely to be delayed whilst such evidence is obtained as the court will always require evidence regarding diagnosis and prognosis from at least one independent expert. In the Cwm Taf case, the patient was thought to have been in a vegetative state for many years, but no SMART assessment had been carried out. Ultimately, after the instruction of a second expert, the court concluded that the diagnosis of PVS was safe, but was critical of the failure to follow the PDOC Guidelines which led to delay and uncertainty for all the parties.1 1

Cym Taf University v F [2015] EWHC 2533 (Fam) at para 23.

15.66 Prior to the final determination of the application there will ordinarily be a directions hearing at which: ●● ●● ●●

the involvement and precise role of the Official Solicitor will be determined; the nature of the necessary medical evidence will be established; any orders preserving confidentiality are likely to be made.

The scope of the evidence to be heard at the final hearing should be addressed at the directions appointment. The extent to which clinicians, nursing staff and family members will be required to give evidence will turn on the degree to which (a) there is evidence concerning the patient’s previously expressed wishes (b) the diagnosis is open to debate and (c) there is a dispute between clinicians and family members about the proposed discontinuance. 15.67 At the final hearing, the court is likely to require as a minimum, evidence from the independent experts instructed and the responsible clinician. If family members dispute the proposed discontinuance they should ensure – and they should be invited to ensure – that they have adequate representation at this hearing. At the final hearing the judge will determine whether or not to grant the order sought on the basis of the evidence and submissions by all interested parties. Each case will turn on its own merits and will face detailed scrutiny by the judge.

G  EMERGENCY CASES 15.68 In Frenchay Healthcare NHS Trust v S1 a vegetative patient’s gastrostomy tube had become dislodged. An urgent application came before 598

Withdrawal and Withholding of Treatment  15.70 the court. Time had not permitted independent examinations to be performed to assess the patient’s condition. The Court of Appeal held that it was appropriate to grant a declaration authorising the hospital not to replace the gastrostomy tube. The court rejected the Official Solicitor’s argument that the tube should be reinserted to allow independent opinions to be commissioned. 1 [1994] 2 All ER 403 and see Re OT [2009] EWHC 633 (Fam) in which Parker J rejected a due process argument that the PVS case should not have been brought in an emergency and that the parents should have been permitted further time in order to present their case (paras 78–94). Although for a contrary view, where an adjournment was permitted to allow for the involvement of family members in a case concerning amputation, see SE (Serious Medical Treatment) [2018] EWCOP 45.

Critique of Frenchay approach 15.69 In Bland Lord Goff commented: ‘Even so, where (for example) a patient is brought into hospital in such a condition that, without the benefit of a life support system, he will not continue to live, the decision has to be made whether or not to give him that benefit, if available. That decision can only be made in the best interests of the patient. No doubt, his best interests will ordinarily require that he should be placed on a life support system as soon as necessary, if only to make an accurate assessment of his condition and a prognosis for the future.’1 Thus, the House of Lords envisaged a situation whereby it can be in a patient’s best interests to continue treatment which may subsequently be demonstrated to be futile in order to allow an assessment of the patient’s condition. This principle should generally be applied in an emergency situation such as Frenchay. It must be in the patient’s best interests to ensure that their condition is assessed in accordance with the accepted guidelines; until then, it cannot be determined that continued feeding is against the patient’s best interests and an assault. Further, given that death by starvation is not instantaneous, a significant amount of information can in fact be placed before the court in a short space of time. In Re D2 the court had detailed expert reports and evidence from clinicians and nurses, even though the hearing was on a Friday and the patient’s gastrostomy tube had become detached on the Tuesday.3 The court and the Official Solicitor can act at short notice. However, a Trust should gather careful evidence from clinicians and experts in order to establish the precise degree of urgency in each case. 1 [1993] AC 789 at 867F (emphasis added). See Chapter 6: Going to Court. 2 9 November 2000, unreported. 3 Also note the significant information obtained for the emergency hearing in Re S (30 November 1994, unreported) per Ward J; and note the short period of time in which evidence was gathered in the case of An NHS Trust ‘A’ v Mrs ‘M’ and An NHS Trust ‘B’ v Mrs ‘H’ [2001] 1All ER 801, [2001] 1 FCR 406 and in United Lincolnshire NHS Trust v N [2014] EWCOP 16, [2014] COPLR 660.

H  DOCTORS WHO DISAGREE IN PRINCIPLE 15.70 What steps should be taken by a doctor treating a patient who is in principle against withdrawal of clinically assisted nutrition and hydration? 599

15.70  Withdrawal and Withholding of Treatment A doctor cannot be forced to undertake treatment with which they do not agree.1 However, given that continued treatment of a patient in PVS could comprise an assault, the family of a VS patient may be able to obtain an injunction ordering the cessation of the assault and the withdrawal of tube-feeding. A doctor who disagrees in principle with allowing the patient to die may wish to transfer the care of that patient to another doctor. The need to do so before withdrawing from the case is made clear by guidance from the General Medical Council making it clear that before withdrawal, ‘the doctor must ‘[ensure] that arrangements have been made for another doctor to take over [their] role’.2 The General Medical Council does not consider that it is acceptable to ‘withdraw from a patient’s care if this would leave the patient or colleagues with nowhere to turn.’ 1 Re J (A Minor) (Child in Care: Medical Treatment) [1993] Fam 15 at 26H–27B. 2 Para 79 of the General Medical Council’s Treatment and care towards the end of life: Good practice in decision-making (2010), www.gmc-uk.org/ethical-guidance/ethical-guidance-fordoctors/treatment-and-care-towards-the-end-of-life.

I CHILDREN 15.71 ‘No parent should have to bury a child … no mother should have to bury a son. Mothers are not meant to bury sons. It is not in the natural order of things.’1 In an area of law that is inextricably entwined with family life there can be no more difficult a decision for a parent than to agree to the withdrawal of treatment that will inevitably lead to the death of a much-loved child. It is no surprise that such cases are amongst the most difficult for the families and medical teams involved. It is also to be expected that such cases will grip the imagination of the public. In the six years since the last edition of this book, there have been a number of high-profile cases involving children that have caught the public attention. The cases of Charlie Gard and Alfie Evans in particular have featured significantly both in the press and in social media. There are a number of important points that fall for consideration when dealing with cases involving children but despite repeated challenges, the golden thread running through the jurisprudence is that the best interests of the child are paramount. 1 Guirgis, The Last Days of Judas Iscariot.

Welfare of the child 15.72 In Re T,1 the one-year-old child suffered from a life-threatening liver defect. Without liver transplantation the agreed medical prognosis was that he would not live beyond the age of two to two and a half. The child’s parents were both trained health care professionals and also both had experience in caring for young sick children. They did not believe that T should undergo liver transplantation. The doctors disagreed. At first instance, Connell J found that

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Withdrawal and Withholding of Treatment  15.72 it was in T’s best interests to undergo surgery. The Court of Appeal overturned that decision. Hale LJ said this: ‘In Re B (A Minor) (Wardship: Medical Treatment) …,[2] the child was born suffering from Down’s Syndrome and from an intestinal blockage which required to be relieved by an operation if she were not to die within a few days. The surgeon respected the wishes of the parents not to consent to the operation and decided not to operate. The judge took the same view. This Court allowed the appeal and held that the question for the court was whether it was in the best interests of the child that she should have the operation and not whether the wishes of the parents should be respected.’3 She also quoted Lord Donaldson MR in Re B: ‘In Re B … seems to me to come very near to being a binding authority for the proposition that there is a balancing exercise to be performed in assessing the course to be adopted in the best interests of the child. Even if it is not, I have no doubt that this should be and is the law. This brings me face to face with the problem of formulating the critical equation. In truth it cannot be done with mathematical or any precision. There is without doubt a very strong presumption in favour of a course of action which will prolong life, but … it is not irrebuttable. As this court recognised in Re B account has to be taken of the pain and suffering and quality of life which the child will experience if life is prolonged. Account has also to be taken of the pain and suffering involved in the proposed treatment itself … ‘In the end there will be cases in which the answer must be that it is not in the interests of the child to subject it to treatment which will cause increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child’s and mankind’s, desire to survive.’4 In concluding her review of the authorities she added this: ‘From the decisions to which I have referred which bind this Court it is clear that when an application under the inherent jurisdiction is made to the court the welfare of the child is the paramount consideration. The consent or refusal of consent of the parents is an important consideration to weigh in the balancing exercise to be carried out by the judge. In that context the extent to which the court will have regard to the view of the parent will depend upon the court’s assessment of that view. But as Sir Thomas Bingham MR said in Re Z, the court decides and in doing so may overrule the decision of a reasonable parent.’5 Notwithstanding the clarity of those conclusions and the frequency with which they have been expressed, there have been a number of adventurous attempts to persuade the Court to apply different tests. None have succeeded. 1 2 3 4 5

Re T (A Minor) (Wardship: Medical Treatment) [1997] 1 WLR 242. And see also in relation to all of this section, Chapter 4: Deciding for Others – Children. [1981] 1 WLR 1421[1981] 1 WLR 1421. n1 above at 249. Ibid, 249. Ibid, 250.

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15.73  Withdrawal and Withholding of Treatment 15.73 In Gard, the family were granted permission to appeal on two of their five grounds. The first ground argued that where there was a “viable alternative treatment” for a child which was supported by a parent then: ‘the parents’ preferred treatment option should only be overridden if it is established that the pursuit of that option is likely to cause the child to suffer “significant harm”’.1 By the second ground, the family’s team argued that where the applicant Trust was not able to offer the treatment concerned, it had no jurisdiction to prevent the parents seeking treatment from another provider. The argument was that: ‘… by the time the case came to court there was no question of the hospital providing nucleoside therapy itself and the consequence, indeed the avowed purpose of the hospital seeking declarations with respect to nucleoside therapy, was solely to prevent the parents from seeking such therapy themselves. On the appellants’ case, the English hospital can have no legitimate interest in seeking to prevent the American team from carrying out the therapy.’2 Both of those arguments failed; the President confirmed: ‘It goes without saying that in many cases, all other things being equal, the views of the parents will be respected and are likely to be determinative. Very many cases involving children with these tragic conditions never come to court because a way forward is agreed as a result of mutual respect between the family members and the hospital, but it is well recognised that parents in the appalling position that these and other parents can find themselves may lose their objectivity and be willing to “try anything”, even if, when viewed objectively, their preferred option is not in a child’s best interests. As the authorities to which I have already made reference underline again and again, the sole principle is that the best interests of the child must prevail and that must apply even to cases where parents, for the best of motives, hold on to some alternative view.’3 1 2 3

Yates & Gard v Great Ormond Street Hospital [2017] EWCA Civ 410 at para 58. See Chapter 4: Deciding for Others – Children, para 4.26. Ibid, para 85. Ibid, para 1121.

15.74 In the first appeal advanced in the Evans case, the Court of Appeal granted permission to the family to argue that ‘the readiness of the court to override parental choice under its inherent jurisdiction in the absence of proof of significant harm is incompatible with Article 14 ECHR (read with Article 8)’. However, having allowed permission to appeal, the court then dismissed the appeal on that ground. The family appealed to the Supreme Court which, exceptionally, gave reasons for refusing permission: ‘A child, unlike most adults, lacks the capacity to make a decision in relation to future arrangements for him. Where there is an issue in relation to them, the court is there to take the decision for him as it is for an adult who lacks that capacity. ‘The gold standard, by which most of these decisions are reached, is an assessment of his best interests. The first provision in the Children Act is that the child’s welfare shall be the court’s paramount consideration. Parliament’s provision reflects international instruments, particularly the 602

Withdrawal and Withholding of Treatment  15.75 UN Convention on the Rights of the Child. And in the Human Rights Convention, the rights of a child under article 8 will, if inconsistent with the rights of his parents, prevail over them. ‘But Parliament has provided that in care proceedings there should be an initial hurdle, namely the establishment of significant harm or its likelihood, attributable to the parents, before an assessment of the child’s best interests can be reached. For in such proceedings a powerful extra objective is in play, namely to avoid social engineering. These are proceedings by the state to remove a child from his parents. Families need protection from too ready a removal of him. It might be arguable that a child growing up in many households today would be better off elsewhere. But Parliament has provided that that should not be a strong enough reason for removing him. Significant harm must be established. ‘The present proceedings are quite different; and the gold standard needs to apply to them without qualification. Doctors need to know what the law requires of them. The founding rule is that it is not lawful for them (or any other medical team) to give treatment to Alfie which is not in his interests. A decision that, although not in his best interests, Alfie’s continued ventilation can lawfully continue because (perhaps) it is not causing him significant harm would be inconsistent with the founding rule. ‘We are satisfied that the current law of England and Wales is that decisions about the medical treatment of children, like those about the medical treatment of adults, are governed by what is in their best interests. We are also satisfied that this does not discriminate against the parents of children such as Alfie in the enjoyment of their right to respect for their family life because their situation is not comparable with that of the parents of children who are taken away from them by the state to be brought up elsewhere. ‘The proposed appeal is unarguable so, notwithstanding our profound sympathy for the agonising situation in which they find themselves, we refuse permission for the parents to appeal.’1 1

Evans & James v Alder Hey Children’s NHSFT & Alfie Evans [2018] 3 WLUK 483 at paras 13 –18. See Chapter 4: Deciding for Others – Children, para 4.26.

Decision making in the absence of pain 15.75 In many of the cases that come before the court it is possible to show that the patient (whether child or adult) is likely to suffer pain from the interventions required to sustain life. Where the evidence in support of pain is less strong, the decision making may be more nuanced. Where the patient is an adult, the court is more likely to have evidence of that person’s likely views and beliefs. It is frequently the case that the court will hear that a person held firm religious views that everything should be done to protect and prolong life even where treatment might cause pain and discomfort.1 Such views might also be advanced in respect of children although the weight to be given to them will be affected by the age of the child and the extent to which they have been made aware of and indicted an acceptance of those religious beliefs.2

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15.75  Withdrawal and Withholding of Treatment Notwithstanding the added complexity of the decision-making process, the test remains the same – namely whether the provision of the treatment concerned is in the child’s best interests. If not, then following the Supreme Court’s approach in Aintree,3 it will not be lawful to provide the treatment. 1 2 3

An NHS Trust v VT [2014] COPLR 44. See Chapter 4: Deciding for Others – Children, para 4.38 for discussion of the issue of pain. Raqeeb v Barts NHSFT [2019] EWHC 2531 (Admin) at para 173 and see Chapter 4: Deciding for Others – Children: para 4.30. Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, [2014] AC 591.

Dignity 15.76 There is unlikely to be a single case concerning the withholding of treatment where the court is not referred to the issue of human dignity. In Bland, Hoffman LJ introduced the issue as follows: ‘And another principle, closely connected, is respect for the dignity of the individual human being: our belief that quite irrespective of what the person concerned may think about it, it is wrong for someone to be humiliated or treated without respect for his value as a person. The fact that the dignity of an individual is an intrinsic value is shown by the fact that we feel embarrassed and think it wrong when someone behaves in a way which we think demeaning to himself, which does not show sufficient respect for himself as a person.’1 Lord Goff considered the indignity of providing a patient with treatment that was futile: ‘But for my part I cannot see that medical treatment is appropriate or requisite simply to prolong a patient’s life, when such treatment has no therapeutic purpose of any kind, as where it is futile because the patient is unconscious and there is no prospect of any improvement in his condition. It is reasonable also that account should be taken of the invasiveness of the treatment and of the indignity to which, as the present case shows, a person has to be subjected if his life is prolonged by artificial means, which must cause considerable distress to his family – a distress which reflects not only their own feelings but their perception of the situation of their relative who is being kept alive. But in the end, in a case such as the present, it is the futility of the treatment which justifies its termination.’2 In a case where it is said that further treatment is at best futile and at worst likely to cause pain and suffering, it is frequently argued that to withdraw treatment, to provide palliation and allow a patient to die peacefully is to provide them with a ‘dignified’ death. The implication is that continued existence without any awareness is in some way undignified and that it is therefore in P’s best interests to prevent that undignified existence. That proposition may be hard to substantiate. Whether it is successful with a particular tribunal will turn fundamentally on the facts and circumstances of the individual case. 1 2

Bland [1993] AC 789, [1993] 2 WLR 316, [1993] 1 FLR 1026, HL at 826. See Chapter 4: Deciding for Others – Children, para 4.39 for discussion of the issue of dignity. Ibid, 869.

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Withdrawal and Withholding of Treatment  15.78 15.77 There can be little argument with Hayden’s J’s views in M v N that ‘[t]here is an innate dignity in the life of a human being who is being cared for well and who is free from pain’,1 but in the case of a patient who is insensate and being cared for well by a professional team, how does the concept of dignity help the court? Certainly if the treatment being provided is in any way invasive it seems that this will diminish the patient’s dignity. In the American decision of In re Conroy, Handler J said: ‘The medical and nursing treatment of individuals in extremis and suffering from these conditions entails the constant and extensive handling and manipulation of the body. At some point, such a course of treatment upon the insensate patient is bound to touch the sensibilities of even the most detached observer. Eventually, pervasive bodily intrusions, even for the best of motives, will arouse feelings akin to humiliation and mortification for the helpless patient. When cherished values of human dignity and personal privacy, which belong to every person living or dying, are sufficiently transgressed by what is being done to the individual, we should be ready to say: enough.’2 In those circumstances it is not entirely surprising that in recent cases the courts have found the concept of dignity to be less than straightforward in application. In Raqeeb, Macdonald J said: ‘The concept of human dignity as an element of the best interests analysis is however, not without difficulty. The term ‘human dignity’ does not lend itself to precise definition and there is no universal agreement as to its meaning. The concept of human dignity must, accordingly, contain a significant element of subjectivity and thus be influenced by, for example, the religious or cultural context in which the question is being considered’3 In Bland, Lord Brown-Wilkinson had identified the obvious risk that where judicial decision making took account of ‘impalpable factors’ such as dignity: ‘the law so laid down will of necessity reflect judges’ views on the underlying ethical questions, questions on which there is a legitimate division of opinion’.4 He continued: ‘Where a case raises wholly new moral and social issues, in my judgment it is not for the judges to seek to develop new, all embracing, principles of law in a way which reflects the individual judges’ moral stance when society as a whole is substantially divided on the relevant moral issues’.5 1 2 3 4 5

M v N [2015] EWCOP 76 at para 72. In Re Conroy (1985) 486A.2d 1209 at 1249. Raqeeb v Barts NHS Foundation Trust [2019] EWHC 2531 (Admin) at para 176. Bland [1993] AC 789, [1993] 2 WLR 316, [1993] 1 FLR 1026, HL at 879 – 880. Ibid, 880.

15.78 Despite that warning, judges have found it difficult not to take such impalpable factors into account. In Guys & St Thomas’ Children’s NHSFT v Pippa Knight,1 the family relied heavily on the earlier decision of Macdonald J in Raqeeb. Poole J noted: ‘Notwithstanding this warning, judges have drawn “impalpable factors” into the balance … … [In Raqeeb] MacDonald J held that factors such as human dignity and the benefits of being cared for by a loving family as opposed to by hospital personnel in an intensive care unit, ought to be weighed in the balance even for a child with very limited conscious awareness.’2 605

15.78  Withdrawal and Withholding of Treatment Despite the urging of the family, when he had considered all the evidence, Poole J said: ‘The concept of “dignity” to which MacDonald J referred in Raqeeb… and which has influenced the view of [the doctor], is, I believe, problematic and does not assist me in identifying what is in Pippa’s best interests.’3 He then gave examples of the many different and subjective approaches to, and assessments of, what would be considered dignified or undignified by different assessors. When the Knight case was considered by the Court of Appeal, Baker LJ decided that on the facts of the case it was not necessary to make any decision on the issue of dignity: ‘In a future case, it may be necessary for this Court to address arguments akin to those put forward by Mr Davy about the role played by the concept of dignity in decisions of this sort. That necessity does not arise on this appeal.’4 1 2 3 4

[2021] EWHC 25 (Fam). Ibid, para 29. Ibid, para 86. [2021] EWCA Civ 362 at para 100.

15.79 In North West London Clinical Commissioning Group v GU1 there had been a delay of many years in bringing before the court an application to determine whether it was in GU’s best interests to continue to receive life sustaining treatment. The judge began an investigation of the role of dignity in his decision with the warning that what followed was not an ‘exegesis of the law’ or a review all the relevant international instruments touching on the issue of dignity. What followed, however, was nevertheless an impressive and thorough review of the relevant material and a ‘must read’ on the ‘dignity issue’.2 1 2

[2021] EWCOP 59. Ibid, paras 42 to 91.

15.80 Looking to the future, whilst the issue of dignity will doubtless appear in arguments about best interests, it is vulnerable to different and subjective analyses. Looking back over nearly 30 years of caselaw since Lord BrowneWilkinson’s warning in Bland, it is unclear whether use of the term ‘dignity’ has in fact assisted either the parties or the courts when deciding best interests. Where the perceived ‘indignity’ is invasive treatment then that is objectively a burden to the beholder. If, because of a patient’s religious beliefs, such treatment is something that they would have welcomed or indeed requested had they been able – one view is that it cannot be undignified unless it is considered so by the beholder, but that is an entirely subjective assessment and ignores the patient’s previously stated views. In Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust v TG, Cohen J rejected the idea that prolonging life sustaining treatment in the case of a woman in a vegetative state would impose a burden of indignity, saying: ‘I am satisfied that the issue of indignity is not one that features large in this case. I arrive at that conclusion for a number of reasons, first of all it is quite clear from the statements made by the family and friends that personal dignity is not something that featured large in TG’s life or thoughts. Secondly, I am satisfied that the issue of pain is not one that impacts in this 606

Withdrawal and Withholding of Treatment  15.82 case as it is not felt by the patient. If pain does emerge, as it might if she were to regain a minimal degree of consciousness, that should be amenable to treatment with medication ‘… TG would not perceive the intensive care she is currently receiving as a loss of dignity but would accept it as part of God’s plan and … she would not wish her doctors to take any active step to terminate that plan.’1 Looking forwards, it will remain important in each case to begin with a detailed forensic analysis of the specific beliefs and views of the individual concerned before considering the benefits and burdens of treatment in that particular case. Only then can the ‘issue of dignity’ for the individual patient be assessed. 1

[2019] EWCOP 21 at paras 22 and 25.

The procedural position in applications relating to children 15.81 Is the substantive and procedural position different if the patient is a child? Usually a parent can provide valid consent for a child. If the child is unconscious a parent can provide consent for that child to undergo medical procedures. If a parent consents to discontinuance of feeding and hydration in a child with PDOC, an application to the court is not strictly necessary.1 However, the testing that is available in adults (SMART and WHIM) to confirm the nature and extent of the PDOC cannot be used in children and this may affect the certainty of any diagnosis. Thus, if there is any doubt at all about the diagnosis or if the decision making is at all finely balanced, a declaration from the court should be sought. An application for wardship is no longer required. If there is no other reason to invoke the wardship jurisdiction then the application can simply be made for a ‘specific issue’ order under s 8 of the Children Act 1989 or an order under the High Court’s inherent jurisdiction. The procedure and evidence for such a hearing will be substantially the same as outlined above in relation to adults. The test for children is whether the proposed discontinuance is in the best interests of the child. As discussed above, this is the same test as applied for adults. 1 See Chapter 4: Deciding for Others – Children; the position would be different if there was a dispute between the parents. Cf the position relating to adults: see [2018] UKSC 46. See para 15.56 above.

Social media 15.82 In recent cases families have used social media both to raise awareness of the case and to seek financial contributions to cover the costs of the litigation as well as the potential costs of transfer and treatment abroad. It is unsurprising that applications concerning the withdrawal of treatment that will result in the death of a child are the source of considerable public interest. However, the information posted on social media sites may not be reliably complete or accurate and this can have a very deleterious impact on the clinicians involved and has in some cases impacted on the operational status of the hospitals concerned. Further, rather than helping, online misinformation – including illinformed and injudicious ‘legal advice’ – can apply still more weight to the 607

15.82  Withdrawal and Withholding of Treatment unbearable burden that families bear in cases concerning a beloved child’s future.1 1 See the Evans case paras 15.71 and 15.74 above and the Gard case [2017] EWHC 1909 (Fam), [2017] 4 WLR 131 where the judge was moved by the misinformation available online to comment (at para 18): ‘I think it my duty to comment briefly on the absurd notion which has appeared in recent days that Charlie has been a prisoner of the National Health Service or that the National Health Service has the power to decide Charlie’s fate. This is the antithesis of the truth.’

Medical experts 15.83 The court will be assisted in every case by appropriately qualified medical experts providing well informed expert advice on the relevant issues. It should not require stating that examination of children (and adults) can only be carried out by experts with material expertise, obtained in an open way with appropriate consents – and when proceedings are in place with due respect to the court’s orders and processes. The expert approach should be grounded in the facts of the case and apply recognised and respected methods of testing and analysis.1 Applicant trusts should have access to well qualified experts who can provide informed independent opinions. It is understandable – particularly given the funding issues – that family members who seek to oppose a Trust’s application may struggle to obtain appropriately qualified experts. Discussions between the legal representatives should assist, at least in confirming the identity of experts who are appropriately qualified. It does families a significant disservice if their advisors allow their opposition to an application to proceed on the basis of expert evidence that is either unqualified, ill-informed or both. 1 See, for example, Z v University Hospitals Plymouth NHS Trust [2020] EWCOP 69 where Cohen J declared he ‘deplore[d] the underhand way in which this [expert] evidence was obtained’ and made extensive criticism of the purported expert opinion received (paras 22–25).

Funding 15.84 Funding issues face many families presenting cases before the court. These have repeatedly been referred to by judges hearing the cases. See most recently Peel J in Great Ormond Street Hospital for Children v MBC: ‘I cannot forbear from comment that it seems to me to be little short of scandalous that in cases of serious, and often urgent, medical treatment for children, where issues of life and death are frequently considered, parents such as these have little option but to rely upon the goodwill, availability, and dedication of members of the Bar acting for free.’1 Despite the obvious support for an extension to funding to cover these cases, nothing has been done to improve the access to justice and very many families in these cases will not have funds available to instruct specialist counsel, solicitors and medical experts at short notice. Nevertheless, they will not be poor enough to qualify for legal aid. There are very many reasons why the present position is wholly unacceptable. Given the likely pressures upon the family when these cases arise, it will be difficult for them to navigate their way to appropriate representation. Trusts and hospitals should assist with this referral where possible: it is in 608

Withdrawal and Withholding of Treatment  15.85 all parties’ interests for those before the court to be adequately represented. In order to try and assist with this, there have been discussions between the Bar and Advocate, the pro bono charity supported by the independent Bar that can provide specialist advocates for these hearings. An application should be made to Advocate immediately if it becomes clear that a family does not have funding for representation in a withdrawal case. The sooner the referral is made, the better chance of specialist counsel being identified to provide representation. 1

[2021] EWHC 2574 (Fam) at para 22.

J MEDIATION 15.85 Mediation should be attempted in a far wider range of cases – involving both adults and children – than undertaken to date. Mediation usually refers to the agreement and instruction by the parties of an independent, qualified mediator who will not determine the case but will simply seek to bring the parties ultimately to a mutually satisfactory resolution of the case. Even if resolution is not achieved, mediation can be very useful at least in ensuring that both sides properly understand each other’s positions and concerns in an understandably fraught situation. Mediators approach a case objectively and without any pre-conceived or entrenched views. In the experience of the authors, the sooner the attempt is made formally to mediate the case, the greater the prospect of success. This is not to detract from the skills that specialist counsel and solicitors will have in trying to narrow and settle issues in any given situation. It is implicit that the parties will do their best to try and resolve matters without needing to take matters before a court: however, in disputed withdrawal or withholding cases (typically) the family are fighting for the prolongation of life and any compromise that will deprive them of that hope will rarely be palatable. Sometimes families may not properly understand – or may not wish to hear – the objective legal advice they have received; for example, thinking that unfavourable legal advice indicating the court’s likely position on a case is simply the product of the fact that their lawyers are insufficiently ‘on their side’ and another legal team is required. Also, emotions may run high amongst those treating the patient, for example, if they have come, after anxious deliberation, to the conclusion that the patient should be allowed to die, or possibly because of frictions with the family involved. Further, there may be debates within the treating team about the ethical rights or wrongs of a proposed withdrawal of treatment. Thus, the involvement of an independent third-party mediator may serve to reduce the temperature all round and lead parties to consider new methods of addressing differences and new routes to resolution. Those mediators who have material medical or legal experience may be better placed to ‘stress test’ the participants’ proposed strategies or options. The mediator will guide the parties as to what documentation they require in advance of the mediation meeting. They rarely require all the papers in a case but will often be assisted by the parties’ providing very short position statements in writing and by a clear dramatis personae of all the parties and lawyers involved. It is essential that there is direct access to those with power to take decisions at the time of the mediation. 609

15.85  Withdrawal and Withholding of Treatment In conclusion, it would be wise for parties to heed the words of Francis J in his conclusion of judgment in the Gard case and consider mediation in all contentious withdrawal cases: ‘I recognise, of course, that negotiating issues such as the life or death of a child seems impossible and often will be. However, it is my clear view that mediation should be attempted in all cases such as this one even if all that it does is achieve a greater understanding by the parties of each other’s positions. Few users of the court system will be in a greater state of turmoil and grief than parents in the position that these parents have been in and anything which helps them to understand the process and the viewpoint of the other side, even if they profoundly disagree with it, would in my judgment be of benefit and I hope that some lessons can therefore be taken from this tragic case which it has been my duty to oversee.’1 1

Great Ormond Street Hospital v (1) Yates & (2) Gard [2017] EWHC 1909 (Fam), para 20 (emphasis added).

K CONCLUSION 15.86 The substantive law in relation to withdrawal of treatment from patients, including those in a prolonged disorder of consciousness, changed substantially with the decision in An NHS Trust v Y, although the principles enunciated by the House of Lords in Bland still apply. The rate of medical research into the differential diagnoses of VS and MCS has been rapid: recent research suggests that some patients thought to be in a vegetative state could be aware, despite appearing to be unconscious and being behaviourally unresponsive.1 It is hoped that with the increase in sophistication of the techniques for assessing awareness and the training of more assessors who are skilled in the use of those techniques, the disturbing prospect of misdiagnosis has receded. Nevertheless, the fatal consequences of a declaration allowing treatment to be withdrawn mandates a cautious approach in the preparation and advancement of such applications. Even in relatively recent history there have been cases where patients initially said to be in a PVS were in fact in a MCS when a rigorous diagnostic approach utilising SMART testing was adopted.2 It is essential that any application for withdrawal of artificial hydration and nutrition should be supported by a sound diagnostic approach with convincing evidence that all reasonable treatment, assessment and rehabilitation measures have been undertaken. Any indications of possible consciousness – apparent either from medical records or from witness testimony – should be analysed and explained to determine whether they in fact are indicators of consciousness. If, adopting the more recent classification of the Royal College of Physicians, a diagnosis of VS is clearly established, then the final steps of withdrawal of life-sustaining hydration and nutrition are more likely to be declared lawful by the court, but there is no inevitability about this if the facts of the case suggest this is not in the patient’s best interests.3 For all permanent disorders of consciousness, the outcome will now turn on the unique facts of the particular case.

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Withdrawal and Withholding of Treatment  15.86 1

Some patients in a vegetative state retain awareness, despite being unable to move, sciencedaily.com, 19 October 2015, www.sciencedaily.com/releases/2015/10/151019122401. htm. 2 For example, Re M (Adult Patient) (Minimally Conscious State: Withdrawal of Treatment) [2012] 1 WLR 1653 and St George’s Healthcare Trust v P and Q [2015] EWCOP 42; [2015] Med LR 463. 3 But not invariably: see Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust v TG [2019] EWCOP 21.

For updating material and hyperlinks related to this chapter, see www.serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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Chapter 16

The Right to Die?

A B C D E F G

Introduction 16.1 The present context  16.4 ECHR challenges  16.5 Potential legislative change  16.12 End of life care  16.17 The law as it stands  16.19 The future  16.22

A INTRODUCTION 16.1 Does the law of this country give its citizens a ‘right to die’? Should it? The lawfulness of withdrawing treatment from those in persistent vegetative states or minimally conscious states, permitting their death, is predicated on analysis that this involves an omission, not an act. This chapter considers situations where the law cannot sidestep ethical dilemmas by categorising the facts of a case as involving omissions. 16.2 The law in relation to assisted suicide continues to arouse much controversy. For many citizens, their response is determined by the most profound ethical and religious principles. There is no direction in which any government or Parliament could travel which would not risk alienating a significant proportion of the population. As a result, the law is currently in a position of uneasy stasis. It is unquestionably criminally unlawful in this country for a doctor – or anyone – to give lethal drugs to a disabled or terminally ill patient, even if doing so is in accordance with that patient’s capacitious wishes. However, the reality on the ground is that many patients nearing the end of their lives are treated with medications that are foreseen to be likely to accelerate their death. It is also criminally unlawful for a person to assist the suicide of another, including by helping them travel abroad to countries where it is lawful for them to be administered lethal drugs. But the guidance of the Director of Public Prosecutions (“DPP”) is that while a genuinely compassionate facilitator of someone’s suicide will still be acting unlawfully, they are unlikely to face prosecution, on the grounds that it is not in the public interest to pursue such a conviction.

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16.2  The Right to Die? The position of recent Parliaments has been that the public interest in protecting life outweighs any individual’s interest in facilitating the suicide of another. A series of cases have raised vital issues about an individual’s right to regulate not only their life but also their death, basing challenges to the law on alleged incompatibility with the European Convention of Human Rights. However, the courts have left resolution of the key ethical issues to Parliament. It may seem odd to the reader to criminalise any person who assists another in a lawful act, but it is important to remember that most people who contemplate suicide do so because they feel weak and vulnerable. The DPP’s guidance on when it will not be in the public interest to prosecute cases of assisted suicide is a step towards marking out those situations when it is ethically right to assist someone else’s suicide.1 1 See CPS: Policy for Prosecutors in Respect of Cases of Encouraging or Assisting Suicide updated October 2014; https://bit.ly/CPS-Oct14.

16.3 It is helpful to be clear about terminology, particularly given the extent to which public understanding and political debate can be clouded by media coverage, and as opposition to reform of ‘right to die’ laws often focusses on the ‘slippery slope’ by which legalisation of one form of euthanasia is forecast to lead to the legalisation of other forms. Euthanasia – the word derives from the Greek for ‘good death’ – means a gentle and easy death, or the means of bringing about or inducing such a passage out of life.1 In the twenty-first century, this is easily achieved through the ingestion or administration of lethal drugs. Voluntary euthanasia involves people who have made a conscious decision to die and ask for help to do so, in contrast to non-voluntary euthanasia, whereby a patient is not able to make or communicate a capacitous decision, but a decision is made for them. The phrase ‘assisted suicide’ will generally mean cases of voluntary euthanasia: giving effect to the wishes of someone who wants to end their own life, but cannot do so, typically as a product of the very condition that places them in that position, such as ‘locked-in’ syndrome. ‘Assisted dying’ tends to be used to refer to assisted suicide where a person is terminally ill, permitting someone to die sooner and in a potentially less painful and traumatic context, on their own terms. There are no proposals in this country to legalise any kind of involuntary euthanasia. Importantly, while proposed Parliamentary reforms have only sought to legalise assisted dying for the terminally ill, ECHR-based challenges in the courts have generally been brought on behalf of claimants who are not likely to die in the near future – which, of course, is their very motivation for seeking assisted suicide in the first place. 1

See https://www.oed.com/view/Entry/65140?redirectedFrom=euthanasia&.

B  THE PRESENT CONTEXT 16.4 There are two essential facts which make up the context of the present legal and political debate on the right to die. The first is that many countries around the world now have laws which are different to those in the UK. Some of those countries will – at least for now – permit UK citizens to access healthcare facilities within their jurisdiction through which they can bring about the end of their lives. 614

The Right to Die? 16.5 Assisting dying laws can now be found in Belgium, Canada, Luxembourg, the Netherlands, and the US states of California, Oregon and Washington. In 2020, 62.5% of voters in New Zealand approved assisted dying for the terminally ill and a law supporting this came into effect in 2021. The most well-known international example is Switzerland, where the assisted suicide of foreigners travelling to the country is permitted and has been facilitated by Dignitas.1 Under Swiss law, assistance with suicide is lawful provided the assistant’s motives are not ‘selfish’. Between 2002–2016, 357 people from the UK travelled to Switzerland to die.2 The average cost of obtaining an assisted death overseas is £10,0003 and this option is plainly not available to much of the population. The availability of assisted dying overseas raises the specific question of whether a person who assists another to travel overseas to die commits an offence under the Suicide Act 1961, as well as being the most obvious source of inspiration and legitimisation for those seeking reform of UK laws. The second context is advancements in medical science which mean more people can now live for many years with terminal conditions such as motor neurone disease. The experiences of such people have been vividly brought to the court’s attention when they have come to court to seek changes to the law. One such litigant, Noel Conway, described his experience as feeling: ‘like a condemned man awaiting execution on a date yet to be determined … I became aware of how agonising it must be to be someone on death row for years and years not knowing when the order will come.’4 Other litigants have had non-terminal but permanent conditions of the most profound disability, such as ‘locked-in’ syndrome, the victims of which may be unable to move. A victim of locked-in syndrome was Tony Nicklinson, who described his life after a stroke: ‘I need help in almost every aspect of my life … I cannot scratch if I itch, I cannot pick my nose if it is blocked and I can only eat if I am fed like a baby – only I won’t grow out of it, unlike the baby. I have no privacy or dignity left. I am washed, dressed and put to bed by carers who are, after all, still strangers … I am fed up with my life and don’t want to spend the next 20 years or so like this. Am I grateful that the Athens doctors saved my life? No, I am not. If I had my time again, and knew then what I know now, I would not have called the ambulance but let nature take its course.’5 1 Contrary to the impression given by newspaper reports, Dignitas is not a single clinic. It is a member’s society which facilitates people’s right to die in Swiss medical facilities, in accordance with Swiss law. 2 The True Cost: How the UK outsources death to Dignitas, November 2017, report by Dignity in Dying, p 11. 3 Ibid, p 31. 4 https://features.dignityindying.org.uk/noel-conway/. 5 https://www.theguardian.com/society/2010/jul/19/locked-in-syndrome-die-dpp. Quoted in E Jackson and J Keown, Debating Euthanasia, (Oxford, 2012), p 4.

C  ECHR CHALLENGES 16.5 A series of challenges to the Suicide Act 1961 have considered whether its provisions contravene the ECHR.1 The validity of s 2 of the Suicide

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16.5  The Right to Die? Act 1961 was first considered in the 1980s by the European Commission on Human Rights in R v UK.2 This was a challenge by a member of the Voluntary Euthanasia Society, who was convicted of conspiracy to aid and abet a suicide. He argued that the section violated the right to privacy (Art 8) and the right to freedom of expression (Art 10). The Commission’s view was that s 2 did not violate the right to privacy (Art 8) because the notionally private act of suicide encroached on the legitimate public interest of protecting life. Further, there was not a breach of freedom of expression (Art 10) due to: ‘the State’s legitimate interest in this area in taking measures to protect, against criminal behaviour, the life of its citizens particularly those who belong to especially vulnerable categories by reason of their age or infirmity.’3 1 It should be noted that any challenge to the Act could not be made other than by seeking a declaration of incompatibility in the High Court (or by a challenge within criminal proceedings) – see DPP v Kebeline [1993] 3 WLR 972. As primary legislation, the courts have no power to override its effect unless and until it is repealed or amended by Parliament: s 4 of the Human Rights Act 1998. 2 (1983) 33 DR 270. In Canada the constitutional ‘right to life’ was the basis for a challenge (albeit unsuccessful) to the Criminal Code which prohibited assisting suicide (Rodriguez v British Columbia (1994) 107 DLR (4th) 342). 3 (1983) 33 DR 270 at 272.

16.6 Section 2 of the Suicide Act 1961 was challenged again in R (Pretty) v Director of Public Prosecutions1 on the basis that the section operated to prevent Mrs Pretty’s assisted suicide, and thereby violated her right to life (Art 2) and right to privacy (Art 8). Both claims were ultimately dismissed, confirming that Art 2 does not confer a right to die and stating that Art 8 was not engaged.2 On appeal to Strasbourg3 it was held that the manner in which one chooses to end one’s own life, in order to avoid an undignified or distressing end, did engage the right to privacy (Art 8(1)). However, the operation of s 2, which allowed due regard to be given in each particular case to the public interest in bringing a prosecution, did not violate the right itself (Art 8(2)). 1 2 3

[2002] 1 AC 800. Pretty was subsequently challenged in Purdy (see discussion paras 16.7–16.9 below). Pretty v UK (2002) 35 EHRR 1.

16.7 A different challenge to s 2 was deployed in R (Purdy) v Director of Public Prosecutions.1 This time the challenge was on the basis that Art 8 was infringed by the refusal of the DPP to issue specific guidance as to the criteria which would be used in exercising his discretion under s 2(4), whether or not to prosecute an individual case of assisted suicide. The applicant did not seek to decriminalise assisted suicide but challenged the uncertainty as to whether or not an individual would, in fact, be prosecuted. On this basis the challenge was successful. 1

[2009] UKHL 45, [2009] LS Law Med 479.

16.8 Mrs Purdy, a sufferer of progressive multiple sclerosis, wished to have the assistance of her husband in travelling abroad to Switzerland where assisted suicide was lawful. She sought specific guidance from the DPP as to whether or not in such circumstances her husband was likely to face criminal prosecution. The House of Lords, overturning the Court of Appeal, held that Mrs Purdy’s Art 8 rights were engaged (thereby overruling Pretty)1 and ruled that the general guidance from the DPP failed to satisfy the Art 8(2) requirements of accessibility and foreseeability in assessing whether or not a 616

The Right to Die? 16.9 prosecution of her husband was likely to follow after her death.2 The DPP was therefore required to publish a policy clarifying his position as to the factors that he regarded as relevant for and against prosecution. 1 Compare with Michael Freeman’s earlier view: ‘Article 2 is limited to protecting an individual’s right to life, and whether it protects a person’s right to decide how to live or how to die must be regarded as dubious given that the Convention separates the right to life (Art 2) from the right to security (Art 5).’ Death, Dying and the HRA, 1999 52 Current Legal Problems 218. 2 By the time of the House of Lords’ hearing in Purdy there had apparently been 115 cases where suicide had been successfully achieved abroad. To date there have been no prosecutions but only in the case of Daniel James did the DPP provide reasons as to why a prosecution had not taken place – 9 December 2008. For further discussion of Purdy see C Johnston’s commentary at [2009] LS Law Med 479 at 501–502.

16.9 The decision of the House of Lords in Purdy did not alter the substantive criminal law. It remains a criminal offence under s 2 to assist the suicide of another. However, s 2(1) is a special case, as was stated by Lord Brown: ‘There are not many crimes of which it can be said that their discouragement by the State may violate the fundamental human rights of others. Yet undoubtedly that is true in certain circumstances of the conduct criminalised by section 2(1) of the Suicide Act 1961.’1 Thus, the decision confirmed that Art 8 encompasses an individual’s right to manage his life and death, and entitles that individual to be provided with sufficient guidance from the State as to how the discretion to prosecute the offence of assisted suicide will be exercised. Following Purdy, further challenge to the law on assisted suicide in England and Wales came in the highly publicised Nicklinson litigation, in which the Supreme Court handed down judgment in 2014.2 Tony Nicklinson had suffered from ‘locked-in syndrome’. He had consistently regarded his life as ‘dull, miserable, demeaning, undignified and intolerable’ and wished to end it, but had been prevented from doing so by acute physical incapacity. The two other claimants in the proceedings had been in similar positions. By the time the case was determined, Tony Nicklinson had passed away from pneumonia following self-starvation and refusal of medical treatment. The effect of the Supreme Court decision was that the court unanimously considered the prohibition on assisted suicide contained within s 2 of the 1961 Act as being within the margin of appreciation enjoyed by the UK under the Convention. By a majority of five judges to four, the Supreme Court considered that the court had the power to make a declaration of incompatibility, but only two of the majority five (Baroness Hale and Lord Kerr) would have been prepared to make the declaration. Overall, the judgments deferred to the role of Parliament to adjudicate on the two fundamental – but perhaps mutually inconsistent – moral values of the sanctity of life and the principle of autonomy, upon which there is no consensus in society. In the case of ‘Martin’, one of the three claimants within the Nicklinson litigation, the Supreme Court expressly considered the 2010 version of the DPP’s guidance. Specifically, they considered how it related to healthcare and other professionals who may have no pre-existing relationship with the person wishing to commit suicide and who may wish to assist for compassionate reasons. During the proceedings, the DPP through her counsel suggested 617

16.9  The Right to Die? that under the 2010 policy it was most unlikely that a prosecution would be entertained against a stranger who without making a profit provided services to assist a death which if provided by a close relative would not attract prosecution. The Supreme Court, having considered this, declined to interfere with the guidance as then drafted in order to make it reflect this suggestion. The DPP revised the guidance on her own initiative shortly after the Supreme Court’s decision was handed down.3 1 See para 16.7, n1; para 70. 2 R (Nicklinson) v Ministry of Justice and others [2014] UKSC 38; Nicklinson v UK (Admissibility) (2478/15) [2015] 61 EHRR SE7. Note Carter v Canada (A-G) 2015 SCC 5, [2015] 1 SCR 331 declared the prohibition on assisted suicide contrary to fundamental rights: see bit.ly/SupCan-Carter. 3 See para 16.19 below.

16.10 Guidance was published by the DPP after Purdy in September 2009 on an interim basis, superseded by the final guidance published in February 2010 after extensive public consultation. That guidance was updated in October 2014 especially to provide clarity around the role of healthcare and other professionals, after the Supreme Court’s judgment was delivered in the Nicklinson litigation.1 The guidance is considered in detail below.2 1 See CPS: Policy for Prosecutors in Respect of Cases of Encouraging or Assisting Suicide updated October 2014; see bit.ly/CPS-Oct14; see R (on the application of Kenward) v DPP [2015] EWHC 3508 (Admin), [2016] 1 Cr App R 16; R (on the application of AM) v General Medical Council Divisional Court [2015] EWHC 2096 (Admin), [2015] Med LR 453. 2 See para 16.19 below.

16.11 The courts returned to the issue of assisted suicide in R (Conway) v Secretary of State for Justice.1 Unlike the three claimants in Nicklinson, Mr Conway was terminally ill, suffering from motor neurone disease. Like them, he sought a declaration of incompatibility in respect of s2 of the Suicide Act 1961. The Divisional Court and Court of Appeal held that, while rightly described as a ‘blanket ban’, the prohibition on assisted suicide was necessary and proportionate, achieving a fair balance between the interests of the wider community and the interests of people like Mr Conway. Mr Conway proposed an outline alternative ‘statutory scheme’ whereby the terminally ill, with six months to live, could apply to the High Court for permission ‘broadly equivalent’ to the Falconer Bill discussed below. It is hardly surprising that the court stepped back from a submission that it endorse a proposal considered and rejected by Parliament. Most recently, the High Court refused permission to another attempt to bring a judicial review on the grounds that the Suicide Act 1961 was incompatible with Art 8 in R (Newby) v Secretary of Stare of Justice,2 on the grounds it was bound by the decision in Conway, adding: ‘The court is not an appropriate forum for the discussion of the sanctity of life, or for resolution of such matters which go beyond analysis of evidence or judgment governed by legal principle.’ As it stands, the law is settled. Unless a further novel point of law is identified (or there is a dramatic change in Strasbourg’s jurisprudence), it appears no judicial review on behalf of a person who wishes to establish their right to die

618

The Right to Die? 16.13 on the grounds of incompatibility with the ECHR can have any real prospect of success. If the law is to change, it will be changed by Parliament. 1 2

[2018] EWCA Civ 1431, [2020] QB 1. [2019] EWHC 3318 (Admin).

D  POTENTIAL LEGISLATIVE CHANGE 16.12 At the same time as these cases have been working their way through the legal system, there have been repeated legislative attempts to change the law on assisted suicide. The Assisted Dying for the Terminally Ill Bill 2005 was blocked in the House of Lords in 2006. That Bill would have included proposals which allowed doctors to provide the means for terminally ill patients to end their own lives. 16.13 This was followed by Lord Falconer’s proposed amendment to the Coroners and Justice Bill which attempted to remove the threat of prosecution from those who go abroad to help an assisted suicide. The amendment called for the law to be waived if two doctors deemed the person in question terminally ill and competent to make the decision to end their life. It was described by some peers as ill-defined, unsound and unnecessary and was defeated in the House of Lords on 7 July 2009 by 194 votes to 141. It resulted in considerable media interest. The strongly polarised views in the country were reflected in the debate in the House itself. For example, Baroness Campbell contended that sanctioning assisted suicide would make doctors and those helping disabled people think that death was what was wanted by disabled people: ‘the very people who need every encouragement to live and not to succumb to society’s prevalent view that our situation is so tragic, so burdensome, so insufferable that surely we must want to die.’1 Baroness Warnock responded: ‘I think that there is confusion if we run the disabled as a class of people, members of society, into another class of people, the terminally ill, although they may overlap. There are two different concepts and we should not bring them together under the general heading of the vulnerable about whom we hear, in my experience, all too much. Being vulnerable is a judgment made by somebody about another person; in my experience, it is not a judgment that one ever makes about oneself. To be classified as vulnerable is to be regarded from a great height by lawyers or doctors, above all, or nurses. They deem one to be vulnerable. There is a very small category of people, of whom we have heard today, to which belong some of those people who have gone to Switzerland to commit suicide, who do not want to be categorised as vulnerable. They therefore make their own decision.’2 Further she dealt with the concern about selfish relations preying on the disabled or ill stating: ‘Why should people … put up with [the current state of the law] for the sake of other people who are in a quite different position, who may be disabled

619

16.13  The Right to Die? or under pressure from their nasty relations? … We should go back to what this amendment is about and not fear the slippery slope. We should aim for the positive result of clarifying the law as it now stands.’3 A last ditch attempt by Lord Alderdice to amend the Coroners and Justice Bill in similar fashion to that of Lord Falconer’s amendment failed. He withdrew it in the face of stiff opposition. Baroness O’Cathain argued that more help for the terminally ill should be provided by greater support for the hospice movement and that: ‘We must work towards that, but, in the meantime, please let us stop condoning, exulting and encouraging assisted suicide.’4 1 2 3 4

Hansard, Vol 712 No 103, col 613 (7 July 2009). Ibid, col 616. Ibid, col 617. Hansard, Vol 713 No 123, col 1085 (26 October 2009).

16.14 Prior to Lord Falconer’s proposed legislative changes, the Report of the House of Lords’ Select Committee on Medical Ethics had concluded that there were ‘no circumstances in which assisted suicide should be permitted’.1 The report was accepted by the Government who commented that a change in the law to allow assisted suicide ‘would be open to abuse and put the lives of the weak and vulnerable at risk’.2 There were repeated attempts to bring the issue back before Parliament in the 2015–17 Parliament. Building on the momentum which flowed from the Supreme Court’s decision in the Nicklinson litigation,3 an amendment to Lord Falconer’s Assisted Dying Bill was tabled by Lord Pannick (with the support of Lord Falconer) in November 2014, allowing a safeguard of judicial oversight for those who sought assistance to end their own lives. In the 2015/16 Parliament, Lord Falconer’s bill was re-tabled by Rob Marris MP. On 11 September 2015, the Assisted Dying (No 2) Bill was given its second reading in the House of Commons. After lengthy debate, 118 MPs voted in favour of the bill and 330 voted against. Lord Falconer then introduced an Assisted Dying Bill in the House of Lords in substantially similar terms which was not given time for debate. Lord Hayward sought to resurrect the bill in 2016 but Parliament was dissolved before its second reading. 1 2

3

Report of the Select Committee on Medical Ethics, Vol 1 (HL Paper 21-I). Government Response to the Report of the Select Committee on Medical Ethics (Cmnd 2553). Report of the Select Committee on Medical Ethics, Vol 1 (HL Paper 21-I). On 14 September 2021 the BMA policy making body changed the BMA’s policy from opposition to a change in the law on assisted dying to a position of neutrality: https://bit.ly/BMA-Sep21. Nicklinson v Ministry of Justice [2014] UKSC 38, [2015] AC 657.

16.15 Lord Falconer’s Assisted Dying Bill had its first reading in the House of Lords on 28 January 2020. The bill in outline proposed a scheme whereby: (a) (b) (c) (d)

A person who is terminally ill may request and lawfully be provided with assistance to take their own life, subject to the consent of the High Court. The High Court must be satisfied that the person has a voluntary, clear, settled and informed wish to end their life. The person must have made a declaration to that effect, witnessed and also countersigned by two doctors. ‘Terminally ill’ means that the person has been diagnosed as having an inevitably progressive condition that cannot be reversed by 620

The Right to Die? 16.17 treatment, and as a consequence is reasonably expected to die within six months. The bill would only have applied to adults. It would not have legalised health tourism: the person had to be ordinarily resident in England and Wales for at least a year. The bill went far beyond simply formally decriminalising assistance to go abroad for suicide. It provided that the person’s doctor may in this jurisdiction prescribe them lethal drugs in order to end their life, prepare the medicine for their self-administration, and assist them to ingest or self-administer it. The final act of administering the medicine had to remain that of the person who wishes to end their lives. The bill would also have created criminal offences of making or knowingly using a false instrument purporting to be a declaration – which if committed with the intention of causing another’s death, is punishable by life imprisonment – or of wilfully concealing or destroying such a declaration. 16.16 It is important to note that while public, press and Parliamentary debate about reform of assisted dying laws often focusses on case studies much like those in the appellate cases above, the terms of Lord Falconer’s bill would not have in fact provided any of Diane Pretty, Debbie Purdy or Tony Nicklinson with assistance to end their lives, and may not have assisted Neil Conway, depending on whether the medical evidence about his life expectancy said he was expected to die in six months. There is currently no proposal before Parliament to legalise assisted suicide where people are afflicted by chronic and painful conditions which are not in fact necessarily terminal, such as multiple sclerosis. Lord Falconer’s bill1 permitted doctors not to participate in anything authorised by it to which they have a ‘conscientious objection’. It should be obvious that, aside from the ethics of assisted dying itself, doctors being called upon to project life expectancy in the knowledge it will make the difference to the ability to apply to court for permission to die may be put in an exceptionally difficult position. The irony also is that advances in medical technology and care which prolong life expectancy for the chronically or terminally ill may make it harder and harder for a test based on shortness of life expectancy to be satisfied. 1 Whilst Lord Falconer’s Bill did not become law, a similar Private Member’s Bill was introduced in the House of Lords by Baroness Meacher on 26 May 2021. Its text and progress can be followed at: https://bills.parliament.uk/bills/2875.

E  END OF LIFE CARE 16.17 Until and unless the law is changed by Parliament, it is not lawful for a doctor to administer a drug to their patient to bring about their death, even when motivated by a humanitarian desire to end their suffering. For Lord Goff: ‘So to act is to cross the Rubicon which runs between on the one hand the care of the living patient and on the other hand euthanasia – actively causing his death to avoid or to end his suffering. Euthanasia is not lawful at common law. It is of course well known that there are many responsible members of our society who believe that euthanasia should be made lawful; but that result could, I believe, only be achieved by legislation which 621

16.17  The Right to Die? expresses the democratic will that so fundamental a change should be made in our law, and can, if enacted, ensure that such legalised killing can only be carried out subject to appropriate supervision and control.’1 But that rule is not inconsistent with what Lord Goff, also in Bland, described as: ‘The established rule that a doctor may, when caring for a patient who is, for example, dying of cancer, lawfully administer painkilling drugs despite the fact that he knows that an incidental effect of that application will be to abbreviate the patient’s life. Such a decision may properly be made as part of the care of the living patient, in his best interests; and, on that basis, the treatment will be lawful.’2 1 2

Airedale NHS Trust v Bland [1993] AC 789, [1993] 2 WLR 316, HL at 368-G. Ibid, 370-E.

16.18 In September 1992, Dr Nigel Cox was convicted1 of the attempted murder2 of a patient, Lillian Boyes. Ms Boyes has suffered for many years with rheumatoid arthritis which caused her great pain. Ognall J, summing up for the jury, noted that they had ‘developed an unusually strong bond of affection and mutual respect’. Dr Cox injected her with potassium chloride, which the jury were told has no analgesic properties and the use of which could not be accounted for by any clinical benefit. The prosecution acknowledged that Dr Cox was motivated by: ‘deep distress at Lillian Boyes’ condition; by a belief that she was totally beyond recall and by an intense compassion for her fearful suffering.’ Dr Cox would be guilty of murder if the jury were sure he had intended to kill her in giving her that injection. In his summing up, later cited approvingly by the Court of Appeal in a different case,3 Ognall J directed the jury as to the difficulty this posed in the case of doctors providing patients with palliative care: ‘We all appreciate that some medical treatment, whether of a positive, therapeutic character or solely of an analgesic kind – by which I mean designed solely to alleviate pain and suffering – some treatment carries with it a serious risk to the health or even the life of the patient. Doctors are frequently confronted with, no doubt, distressing dilemmas. They have to make up their minds as to whether the risk, even to the life of their patient, attendant upon their contemplated form of treatment, is such that the risk is, or is not, medically justified. If a doctor genuinely believes that a certain course is beneficial to his patient, either therapeutically or analgesically, then even though he recognises that that course carries with it a risk to life, he is fully entitled, nonetheless, to pursue it. If in those circumstances the patient dies, nobody could possibly suggest that in that situation the doctor was guilty of murder or attempted murder. ‘The problem is obviously particularly acute in the case of those who are terminally ill and in considerable pain, if not agony. Such was the case of Lillian Boyes. It was plainly Dr Cox’s duty to do all that was medically possible to alleviate her pain and suffering, even if the course adopted carried with it an obvious risk that, as a side effect of that treatment, her death would be rendered likely or even certain. ‘There can be no doubt that the use of drugs to reduce pain and suffering will often be fully justified notwithstanding that it will, in fact, hasten the moment of death. What can never be lawful is the use of drugs with the primary purpose of hastening the moment of death. 622

The Right to Die? 16.19 ‘And so, in deciding Dr Cox’s intention, the distinction the law requires you to draw is this. Is it proved that in giving that injection, in that form and in those amounts, Dr Cox’s primary purpose was to bring the life of Lillian Boyes to an end? ‘If it was, then he is guilty. If, on the other hand, it was, or may have been, his primary purpose in acting as he did to alleviate her pain and suffering, then he is not guilty. That is so even though he recognised that, in fulfilling that primary purpose, he might or even would hasten the moment of her death. ‘That is the crucial distinction in this case. In short, it is the question of primary purpose. It is relatively easy for me to define for you. It is, however, submitted to you that for any doctor it can be, and was in this case, extraordinarily difficult to apply. ‘If Dr Cox’s primary purpose was to hasten her death, then he is guilty. In using the words ‘hasten her death’ I do so quite deliberately. It matters not by how much or by how little her death was hastened or intended to be hastened.’ A doctor may lawfully administer drugs to a patient which they foresee may hasten that patient’s death where their primary purpose is to alleviate pain. This is the doctrine of double effect. But a doctor may not kill in order to alleviate suffering. Dr Cox received a suspended sentence and GMC proceedings led him to continue practising, under supervision. In 2005, a newspaper quoted him saying: ‘Most doctors will deny it if you ask them ‘Have you ever done it?‘” said Dr Cox, the only doctor ever to be convicted in the UK of attempting to perform a mercy killing. ‘But most doctors, among themselves, will admit that they have bumped off two or three patients at their request. And, certainly, where I have seen this happening, I’ve never had any doubt that it was the correct thing to do.’4 1 R v Cox [1992] 12 BMLR 38. 2 Ms Boyes died, but as the post-mortem evidence could not exclude the possibility that she died of natural causes before the potassium chloride had taken effect, Dr Cox was charged with attempted murder not murder. 3 Re A (Children) (Conjoined Twins: Surgical Separation) [2001] Fam 147 at 251. 4 The Independent, 10 April 2005: see bit.ly/Independent-100405.

F  THE LAW AS IT STANDS 16.19 The Supreme Court refused Neil Conway permission to appeal. Parliamentary efforts at reform through private members’ bills continue to run aground. At time of writing, it appears probable that the status quo with respect to the right to die will be with us for some time. The key document is the DPP’s Policy for Prosecutors in Respect of Cases of Encouraging or Assisting Suicide, last updated in October 2014.1 The status quo in England and Wales is as follows: 1.

The right of an individual to decide how and when to end their life is an aspect of the right to respect for private life, protected by Art 8 ECHR. Section 2 of the Suicide Act 1961 interferes with that right, but does so lawfully: the blanket ban on assisted suicide is necessary and proportionate. 623

16.19  The Right to Die? 2.

3.

4.

5.

6.

7.

It is criminally unlawful for a doctor, or any other person, to carry out a deliberate act which intentionally ends someone’s life. It is homicide. The fact that bringing about a person’s death was in accordance with their wishes is irrelevant; so would be any motive of compassion or mercy towards a person in suffering. A doctor may, however, administer medical treatment to a terminally ill patient with the foresight that their actions will hasten their death provided their primary purpose is to alleviate pain, and not to bring about their death. In many cases, it may in fact be their duty to do so. It is criminally unlawful for a doctor, or any other person, to perform an act capable of encouraging or assisting suicide, with the intention of encouraging or assisting suicide. A doctor who, for example, provided a suicidal patient with the means to end their lives, intending that they would be used for suicide (such as giving advice about fatal drugs to a patient who had indicated they would take them) would have committed an offence and risks imprisonment and erasure.2 This would be the case regardless of whether their patient was terminally ill or wished to end their lives due to the pain and indignity of a chronic condition. The act of assisting a person who wishes to end their life abroad to do so will ordinarily be considered to fall under the category of encouraging or assisting suicide, with the intention of doing so, and will thus be an offence under s 2 of the Suicide Act 1961, carrying a maximum penalty of 14 years’ imprisonment. That the actual suicide took place abroad does not abrogate the ingredients of the offence, so long as the act of assistance and encouragement took place in England and Wales. The offence has not been decriminalised and no-one is ‘immune’ from prosecution. Any person who assists or encourages another to end their life in a foreign jurisdiction where assisted dying is legal must appreciate they may face police investigation and are at risk of serious criminal liability. They will not however be charged if the CPS is of the view that a prosecution is not in the public interest. Yet no lawyer can give an individual any certainty as to whether or not a prosecution will be considered to be in the public interest. Every case will be considered on its own merits and the factors contained in CPS guidance are not exhaustive. It appears however likely to be the case that a person will not be prosecuted for assisting the suicide of a person abroad, despite their actions constituting an offence under s2 of the Suicide Act 1961, where: (a) The deceased was an adult, had capacity, and had reached a voluntary, clear, settled and informed decision to end their life which had been clearly and unequivocally communicated. (b) The ‘suspect’3 was wholly motivated by compassion. The CPS will also consider the extent of assistance and encouragement. A prosecution is less likely where the suspect’s actions were of ‘only minor encouragement and assistance’, where the suspect had sought to dissuade the deceased from suicide, or where their actions may be characterised as ‘reluctant encouragement or assistance in the face of a determined wish on the part of the victim to commit suicide’. It will be obvious that proving the contrary will be difficult for police and prosecutors after the key witness to the alleged encouragement and

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The Right to Die? 16.20

8.



9.

assistance has ended their life. A person would not be wholly motivated by compassion where their motivations included the prospect of gaining in some way from the death of the victim. The CPS will adopt a common-sense attitude to the reality that a spouse or child may well gain financially from the deceased’s death due to the usual rules of inheritance: the critical element is motive. The situations in which a prosecution is more likely to be required will include: (a) Where the suspect pressured the deceased to commit suicide or did not take reasonable steps to ensure that any other person had not pressured them. (b) Where the suspect had a history of violence or abuse towards the deceased. (c) Where the suspect was unknown to the deceased and had provided them with information, including via the internet. (d) Where the suspect gave encouragement or assistance to more than one person. (e) Where the suspect was paid by the deceased or those close to them. It is therefore highly inadvisable for any person to seek to give advice on assisted suicide to strangers, to multiple people, or in return for payment. Groups advocating for reform of the law should be particularly careful to ensure their actions could not be construed as providing encouragement or assistance. Finally, one of the situations in which the guidance expressly states that a prosecution will be more likely is where ‘the suspect was acting in his or her capacity as a medical doctor, nurse, other healthcare professional, a professional carer (whether for payment or not), or as a person in authority, such as a prison officer’ and ‘the victim was in his or her care’. The latter factor means that there was a relationship of care between suspect and deceased such that it will be necessary to consider whether the suspect may have exerted ‘some influence’ upon them.

1 See CPS, Policy for Prosecutors in Respect of Cases of Encouraging or Assisting Suicide updated October 2014; see bit.ly/CPS-Oct14. 2 In 2006 a general practitioner was erased from the medical register for supplying sleeping tablets to a close friend so that the friend could end their life – The Times, 28 September 2006. 3 The term ‘suspect’ is used within the CPS guidance. The guidance also refers to the ‘victim’. This text, on the assumption all such offences would be investigated after the fact, uses the ‘deceased’.

16.20 The guidance was summarised in Parliament by Sir Keir Starmer, who as DPP first drafted the guidance in 2010, as being: ‘underpinned by two principles. The first was that the criminal law should rarely, if ever, be used against those who compassionately assist loved ones to die at their request, so long as that person had reached a voluntary, clear, settled and informed decision to end their life. The second was that very strong safeguards are needed to protect those who might be pressurised in any number of subtle ways. Those who encourage the death of the vulnerable should feel the full force of the law.’1 While the first of those principles is highly likely to hold true, the second must not be forgotten. Any notion that there is now an ‘immunity’ against prosecution

625

16.20  The Right to Die? for assisted dying abroad or that assisted suicide has been ‘decriminalised’ is quite wrong. The DPP’s guidance makes clear that the police are responsible for investigating all cases of encouraging or assisting suicide. Evidence obtained by The Economist via a Freedom of Information Act request to police forces and the CPS in 2016 did however suggest that less than half the cases of Britons who travelled to die in Switzerland were being recorded and investigated.2 1 2

Hansard, col 653 (11 September 2015). The True Cost: How the UK outsources death to Dignitas, November 2017, report by Dignity in Dying, p 64, quoting Police in Britain increasingly turn a blind eye to assisted suicide, The Economist, 14 January 2017.

16.21 What is a doctor supposed to do if a patient wishes to discuss assisted dying? First principles must not be forgotten: doctors should always remember their duty of care to the patient will include considering whether they are experiencing a mental health crisis and could be at risk of harm to themselves or others, and whether there may be any safeguarding issue or reason to suspect abuse. It is highly likely, however, that the situation in which a patient might make enquiries of their doctor about assisted dying will be ones where the patient – who is terminally ill or has a chronic, serious disease – is already well known to and being treated by the clinician. Doctors in this rare situation must ensure they take careful and comprehensive notes and should certainly discuss the situation with their medical protection organisation and with senior colleagues. In the immediate moment, doctors must speak to their patients with compassion and respect, continue to treat them in all lawful and reasonable ways, and make clear that the law precludes them from giving any advice or assistance on the subject of suicide. But any doctor who makes a well-intentioned attempt to give a patient information about their ‘options’ – including, say, travelling to Switzerland – or even signposts them towards sources of such information would be putting themselves at risk of grave criminal and professional sanctions. GMC guidance1 is that: ‘Where patients raise the issue of assisting suicide, or ask for information that might encourage or assist them in ending their lives, doctors should be prepared to listen and to discuss the reasons for the patient’s request but they must not actively encourage or assist the patient as this would be a contravention of the law. Any advice or information they give in response should be limited to an explanation that it is a criminal offence for them to encourage or assist a person to commit or attempt suicide. For the avoidance of doubt, this does not preclude doctors from providing objective advice about the lawful clinical options (such as sedation and other palliative care) which would be available if a patient were to reach a settled decision to kill himself, or agreeing in advance to palliate the pain and discomfort involved should the need for it arise. Doctors should continue to care for their patients and must be respectful and compassionate. We recognise that doctors will face challenges in ensuring that patients do not feel abandoned while ensuring that the advice or information that they provide does not encourage or assist suicide. Doctors are not required to provide treatments that they consider will not be of overall benefit to the patient, or which will harm the patient. Respect for a patient’s autonomy cannot justify illegal action.’ 626

The Right to Die? 16.21 The guidance clearly states that a question of impaired fitness to practise will be raised by a doctor: (a) (b) (c) (d) (e)

encouraging a person to commit suicide, for example by suggesting it (whether prompted or unprompted) as a ‘treatment’ option in dealing with the person’s disease or condition; providing practical assistance, for example by helping a person who wishes to commit suicide to travel to the place where they will be assisted to do so; writing reports knowing, or having reasonable suspicion, that the reports will be used to enable the person to obtain encouragement or assistance in committing suicide; providing information or advice about other sources of information about assisted suicide; providing information or advice about methods of committing suicide, and what each method involves from a medical perspective.

The GMC’s guidance survived an application for judicial review in R (AM) v General Medical Council.2 While Art 8 was engaged, if a blanket ban on assisted suicide did not infringe it, then taking steps to discourage doctors from doing so could not infringe Art 8 either. The fact that the DPP’s policy might be more ‘compassionate’ than the GMC’s did not determine the outcome: the GMC was not obliged to take the same approach and it was not irrational for them to take a different approach. BMA guidance3 is very similar: doctors must ‘respond professionally and compassionately, and continue to support patients in their ongoing care and treatment’. They must ‘avoid any action that the law might consider to be assisting, facilitating, or encouraging suicide’. The BMA inform doctors that the law does not provide a clear definition of what actions might constitute assisting or encouraging suicide, but they recommend that doctors do not: ●● ●● ●● ●● ●● ●● ●● ●●

advise patients on what constitutes a fatal dose; advise patients on anti-emetics in relation to a planned overdose; suggest the option of suicide abroad; write medical reports specifically to facilitate assisted suicide abroad; provide literature to patients on aspects of assisted suicide; disseminate information via the media (including the internet) which would be likely to encourage people to end their lives; put patients in touch with other individuals or groups who may be able to assist or organisations who promote assisted dying; and facilitate any other aspects of planning a suicide.

Both the BMA and GMC have given guidance that providing a patient with access to their records is lawful, even where a doctor knows or suspects that the medical records may be used abroad for assisted dying. This is because of patients’ rights to access their own health records via a subject access request under GDPR. In Nicklinson, Lord Sumption made clear that there is no risk of criminal liability applying to doctors who agree to palliate pain and discomfort caused by a patient acting of their own volition to end their lives. Indeed, they could potentially have civil liability if they did not do so, and the patient was caused harm: ‘the doctor is in no danger of incurring criminal liability merely because he agrees in advance to palliate the pain and discomfort involved should the 627

16.21  The Right to Die? need for it arise. This kind of advice is no more or less than his duty … the law does not countenance assisted suicide, but it does not require medical practitioners to keep a patient in ignorance of the truth lest the truth should encourage the patient to kill himself.’4 Indeed, Lord Sumption’s view was that: ‘many medical professionals are frightened by the law and take an unduly narrow view of what can lawfully be done to relieve the suffering of the terminally ill … much needless suffering may be occurring as a result.’5 1 GMC, Guidance for the Investigation Committee and case examiners when considering allegations about a doctor’s involvement in encouraging or assisting suicide: see bit.ly/GMCFTPDM-101. 2 [2015] EWHC 2096. 3 BMA, Responding to patient requests for assisted dying: guidance to doctors: see bit.ly/ BMA-June19. Note the policy change of the BMA in September 2021: see bit.ly/BMA-Sep21. 4 Nicklinson v Ministry of Justice [2014] UKSC 3 at para 255. 5 Ibid, para 256.

G  THE FUTURE 16.22 In summary, while all capacitous patients have an absolute right to refuse medical treatment, and suicide is not unlawful, there is no ‘right to die’ for the terminally ill or seriously disabled who wish to end their lives, if they are dependent on the assistance of another to do so. It is however the position that doctors may inject terminally ill patients with drugs that have the effect of hastening their death, provided their primary intention is to alleviate pain, and also that a person assisting another to end their lives abroad in jurisdictions where assisted dying is lawful is highly unlikely to be prosecuted if they were motivated by compassion and were acting in accordance with that person’s clear and capacitous wishes. In Cox,1 Ognall J described the law distinguishing the prescription of knowingly fatal amounts of palliative drugs from outright homicide as easy to define but extraordinary difficult to apply. Arguably that applies to the whole present law on the ‘right to die’. While the state of law appears settled, unless and until statutory reform is passed by Parliament, it may be that the difficulties in applying the law to some exceptional cases means that recurrent claims being brought by those advocating for the right to die will continue to reach the High Court. 1

R v Cox [1992] 12 BMLR 38, see para 16.18 above.

16.23 It is beyond the scope of this book to anticipate or take sides in any future debate on how the law might be changed. It may be of assistance to practitioners to consider finally the challenge which proposed reforms to assisted dying laws would present more broadly to how we think about the law’s regulation of people’s choices about their own bodies. Whichever way the law turns has the potential to reshape the fundamental principles of how the law regulates medical treatment decisions. The law recognises that an adult of sound mind may – however unreasonably – refuse life-preserving medical treatment. The principle of the sanctity of life does then yield to principles of self-determination. But it only does so where an individual can end their own life through an entirely autonomous act.

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The Right to Die? 16.23 The current law on assisted suicide operates to prevent part of the population from living according to their own ideals and ethical principles. For many people, the autonomy of the individual over their own body and life, the value of human dignity, and a desire to release themselves or others from suffering all outweigh attachment to the sanctity of life for its own sake. Advocates for liberalisation of euthanasia laws challenge the right of the state to impose sanctity of life values on those people who do want the option of dying on their own terms. For Emily Jackson: ‘There is a critical difference between my position and that of opponents of assisted dying. Supporters of assisted dying recognise that not everyone shares the view that it is acceptable. I would vigorously support and uphold the right of every person to reject assisted dying for themselves, and the right of every healthcare professional to conscientiously object to playing any part at all in its provision. Both access to and participation in assisted dying must be optional and voluntary, and the person beliefs of those who would want nothing to do with it must be respected. In contrast, opponents of assisted dying do seek to impose their belief that it is wrong on others whose views are different. In a secular society, where we recognise that out fundamental moral values differ, shouldn’t we respect both the beliefs of people like Tony Nicklinson, who feel strongly they should have access to assisted dying and the beliefs of opponents of assisted dying, who would reject it for themselves?’1 By contrast, John Keown argues that those who wish to die cannot be considered in a silo. How they exercise their rights will affect everyone. He sees advocacy for assisted dying as inherently diminishing the value which society places on the lives of the elderly and disabled. Laws preventing assisted dying protect the most vulnerable people in society: ‘The “right to die” would surely in time become more of a ‘duty to die’, not least given the burgeoning costs of caring for a growing elderly and demented population. It is often said that the true test of a society is how well it treats its most vulnerable members. The very fact of decriminalisation could easily by itself signal to vulnerable groups, directly or indirectly, not only that they may seek an earlier death, but that they should. ‘A witness appearing before a Canadian select committee put this point well: “Canada has identified a suicide problem among its youth, and we have responded ‘How can we prevent it?’ Canada has identified a suicide problem among Aboriginal peoples and we have responded ‘How can we prevent it?’ Canada has identified a suicide problem among people with disabilities and we have responded ‘How can we assist them to kill themselves?’”’2 1 2

Jackson and Keown, Debating Euthanasia (Oxford, 2012), p 5. Ibid, p 96.

For updating material and hyperlinks related to this chapter, see www. serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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Chapter 17

Treating Suicidal Patients

A B

C D E F G H I J K L

Introduction 17.1 Basic definition  17.2 What is suicide?  17.2 An act  17.3 An intention to act  17.4 An understanding of the likely consequences  17.5 Suicide Act 1961  17.6 Refining the definition of suicide: failure to treat or feed?  17.7 General principles: autonomy  17.10 Patient autonomy versus liability for failing to act  17.15 European Convention on Human Rights: duty to preserve life  17.24 European Convention on Human Rights: the balance to be struck  17.31 Practical problems  17.33 Compulsorily detained patients  17.37 Guidance on approach to treatment  17.47 Conclusion 17.48

A INTRODUCTION 17.1 This chapter addresses the relative entitlements of patients and medical practitioners in the treatment of suicidal behaviour. Of all the situations facing doctors and other hospital staff, this is the one where they are most likely to have to make decisions without recourse to legal advice, let alone the courts, although the latter may on occasion be available and, indeed, play a necessary part in what occurs. The law on the treatment of suicidal patients results in very difficult dilemmas for clinicians in reconciling their duty to protect and treat patients with their obligation to respect patients’ autonomy.1 1 This is a difficult and highly sensitive area. Excellent starting points are provided by the Final Report of the Patient Safety Group of the Royal College of Psychiatrists CR229 Selfharm and suicide in adults (July 2020) https://bit.ly/RCPsych-CR229 and the earlier CR192 Managing self-harm in young people (2014): https://bit.ly/RCPysch-CR192. NICE guidance is contained in Preventing suicide in community and custodial settings (10 September 2018), https://bit.ly/NICE-ng105. Essential support is provided by the Samaritans www.samaritans. org/ (with freephone number 116 123) and note their helpful www.samaritans.org/aboutsamaritans/media-guidelines/.

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17.2  Treating Suicidal Patients

B  BASIC DEFINITION What is suicide? 17.2 The legal definition of ‘suicide’ is an intentional act of self-destruction committed in the knowledge of the probable consequences of the act.1 It therefore requires the ingredients listed below. 1

Clift v Schwabe (1846) 3 CB 437 at 464; Re Davis (deceased) [1968] 1 QB 72.

An act 17.3 The vexed question of the distinction between acts and omissions has been discussed in the chapter on the withholding or withdrawing of treatment.1 The courts have considered the distinction to be relevant in cases involving apparently suicidal actions.2 1 See Chapter 15: Withdrawal and Withholding of Treatment. 2 Note discussion below at para 17.7 in relation to Secretary of State for the Home Department v Robb [1995] Fam 127.

An intention to act 17.4 The legal definition requires ‘intention’. By definition, suicide cannot be carried out by a person who is, at the time of the act in question, incapable, either temporarily or permanently, of forming an intention, or of appreciating the quality of their actions.

An understanding of the likely consequences 17.5 Just because a person is suffering from mental disorder such as depression, it does not mean they will be unable to appreciate the likely consequence of their suicidal act (namely death). The state of the person’s mind will be a matter for judgment and medical opinion in any given case.1 Perhaps surprisingly, capacity is not determinative of the duties owed by doctors to suicidal patients. 1 See Chapter 1: Consent – General.

C  SUICIDE ACT 1961 17.6 Until the passing of the Suicide Act 1961, it was a crime to commit or attempt suicide.1 Section 1 of the 1961 Act abolished that rule. An enduring residue of the criminalisation of suicide was the application of the criminal standard of proof for a conclusion of suicide to be reached by a Coroner at an inquest: however, this approach was finally abolished in R (on the application of Maughan) v HM Senior Coroner for Oxfordshire:2 an inquest may now reach a conclusion of suicide on the balance of probabilities. It was confirmed that two elements must be established before suicide can be found: that the deceased took their own life and that they intended to kill themself. 632

Treating Suicidal Patients 17.8 Under s 2 of the 1961 Act as amended it is still criminally unlawful for anyone to perform an act capable of encouraging or assisting suicide, with the intention of encouraging or assisting suicide or an attempt at suicide. In the medical context, it is therefore unlawful for a doctor knowingly to supply a patient with the means of committing suicide, intending thereby to help him to do so. The language of ‘encouraging or assisting’ replaces the earlier statutory language of ‘aiding, abetting, counselling or procuring’. Section 2(4) of the 1961 Act provides that no proceedings shall be instituted for an offence under s 2 except by, or with the consent of, the Director of Public Prosecutions. The scope of this legislation and contemporary challenges to it are addressed further in Chapter 16: The right to die? 1 2

Suicide Act 1961, s 2. [2020] UKSC 46.

D  REFINING THE DEFINITION OF SUICIDE: FAILURE TO TREAT OR FEED? 17.7 In Airedale NHS Trust v Bland1 the House of Lords concluded that a capacitous patient who refuses to consent to treatment which would have the effect of prolonging their life and who, by reason of the refusal, subsequently dies, does not commit suicide. It was stated that any doctor who complied with a patient’s wishes in those circumstances cannot be said to be aiding and abetting suicide. This view was followed in Secretary of State for the Home Department v Robb,2 in which it was determined by Thorpe J that a prison hunger striker who starved himself to death was not thereby committing suicide. In considering whether the ‘countervailing State interest’ in preventing suicide should be set against the ‘individual’s right of self-determination’ Thorpe J held that the State interest was inapplicable in this setting because the prisoner’s: ‘refusal of nutrition and medical treatment in the exercise of the right of self-determination does not constitute an act of suicide’.3 1 2 3

[1993] AC 789, HL (see Chapter 12: Pregnancy and Childbirth). [1995] Fam 127. Ibid at 132A.

17.8 This seems a surprising conclusion: unlike the class of patients under discussion in Bland, the prison hunger-striker had no underlying condition that, without life support or artificial nutrition and hydration, would have caused his death. If someone who failed to feed a dependent child would be guilty of homicide, it would seem to follow that someone who does not feed themselves is committing self-homicide. Thorpe J’s holding in Robb was an unnecessarily contrived answer to ensure the (necessary) result that doctors are not liable under s 2 of the Suicide Act 1961 if they do not provide artificial nutrition and hydration to patients who refuse consent. Further, the case could be misconstrued as implying that, in circumstances where a patient’s acts or omissions can be construed as ‘an act of suicide’, it is by that reason alone lawful to treat or prevent the ‘act of suicide’ and conversely that a failure to treat must comprise aiding and abetting suicide. 633

17.9  Treating Suicidal Patients 17.9 It was not necessary to hold that the prison hunger-striker was not committing suicide to achieve the desired result of protecting doctors. The proposition in Bland would be better expressed as follows: a doctor is not assisting suicide in circumstances where it is unlawful for them to act to prevent the suicide. If, in treating a patient without their consent, the doctor would be assaulting the patient, they cannot be held to have ‘encouraged or assisted’ a death when the law itself prevents any treatment. This reasoning was offered in the Court of Appeal in Bland by Bingham LJ.1 To assess the culpability of a doctor’s acts or omissions solely in terms of the definition to be applied to the patient’s actions is to downplay the importance of an adult’s autonomy. A doctor cannot violate a capacitous adult’s autonomy over their body to prevent their death, whether that death is the result of ‘suicide’ as defined by the courts or as a result of a refusal to be treated. It would be simpler to accept (contrary to Robb) that starving oneself to death is suicide but that, given a capacitous refusal of nutrition, no-one can lawfully act to prevent that suicide because to do so would be an assault.2 Thus, no-one can be guilty of assisting the patient’s death in those circumstances. 1 [1993] AC 789 at 814. 2 See Chapter 2: Consent & Capacity – Adults and in particular para 2.40.

E  GENERAL PRINCIPLES: AUTONOMY 17.10 The general principles in approaching suicidal patients can be derived from our chapters on capacity and consent.1 A distinction must clearly be drawn between the mentally well adult in possession of full capacity to make medical treatment decisions of importance, and others who are suffering from some degree of mental illness or disorder that gives reason to believe they lack such capacity. 1

Chapter 1: Consent – General and Chapter 2: Consent & Capacity – Adults.

17.11 In general, the law does not seek to interfere in the actions of an adult possessing full capacity intended to cause their own death. Indeed, in the case of Re Z (An Adult: Capacity)1 a local authority was not obliged to take steps to prevent a vulnerable adult from travelling with her husband to Switzerland for the purposes of an assisted suicide. If there was a reasonable suspicion that providing such assistance may constitute a criminal offence, the police should be informed, and can then decide whether or not to take action. Hedley J stated: ‘This case affords no basis for trying to ascertain the court’s views about the rights or wrongs of suicide, assisted or otherwise. This case simply illustrates that a competent person is entitled to take their own decisions on these matters and that that person alone bears responsibility for any decision so taken. That is the essence of what some will regard as God-given free will and what others will describe as the innate right of self-autonomy.’2 There has been a series of legal challenges to legislation prohibiting assisted suicide. These are considered in Chapter 16: The Right to Die? 1 2

Re Z (An Adult: Capacity); Local Authority v Z [2004] EWHC 2817 Fam, The Times, 9 December 2004. At para 21; see also de Cruz, The Terminally Ill Adult Seeking Assisted Suicide Abroad (2005) 13 Med L Rev 257.

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Treating Suicidal Patients 17.12 17.12 A capacitous patient can refuse treatment from a doctor even if such treatment is necessary to save their life. As stated by Lord Hoffman in Reeves v Commissioner of the Metropolitan Police: ‘Autonomy means that every individual is sovereign over himself and cannot be denied the right to certain kinds of behaviour, even if intended to cause his own death.’1 In Re W (Adult: Refusal of Treatment)2 a secure prisoner with capacity was held to have the right to refuse treatment for a self-inflicted life-threatening wound. Once it was confirmed that the patient had sufficient capacity to comprehend the decision he had taken, he had the absolute right to refuse treatment for any reason (or even no reason at all) even where that decision would lead to his death.3 In Brightwater Care Group v Rossiter4 the Supreme Court of Western Australia respected the right of a quadriplegic patient, Mr Rossiter, to refuse artificial nutrition and hydration, declaring that his care provider, Brightwater, was not under an obligation to continue to feed him. Martin CJ stated: ‘Mr Rossiter lacks the physical capacity to control his own destiny, but enjoys the mental capacity to make informed and insightful decisions in respect of his future treatment. In that latter respect he is not relevantly within “the charge” of Brightwater. Rather, Brightwater is, in that respect, consistent with the well-established common law position to which I have referred, subject to Mr Rossiter’s direction.’5 He concluded: ‘… it seems to me to be absolutely clear that after he has been provided with full information with respect to the consequences of any decision he might make, Mr Rossiter has the right to determine and direct the extent of the continuing treatment in the sense that treatment cannot and should not be administered against his wishes. If, after the provision of full advice, he repeats his direction to Brightwater that they discontinue the provision of nutrition and hydration to him, Brightwater is under a legal obligation to comply with that direction.’6 The paramountcy of the capacitous patient’s autonomy over their own body was reiterated by Baker J in A NHS Trust v A: ‘Judge LJ expressed this principle … succinctly in St George’s Healthcare NHS Trust v S[7] …: “Even where his or her own life depends on receiving medical treatment, an adult of sound mind is entitled to refuse it.” There is no doubt that this principle applies in the context of choosing whether to refuse food and drink … Thus, if Dr A has the capacity to make decisions as to whether to take food or drink, he is entitled to starve himself to death if he so chooses. The question is, does he have that capacity?’8 The case of Kings College NHS Foundation Trust v C9 considered the capacity of a woman who refused consent to kidney dialysis. The medical evidence was suggestive of personality disorder, but it was finely balanced, and the court found that the patient had the capacity to make the decision, stating: ‘The decision C has reached to refuse dialysis can be characterised as an unwise one. That C considers that the prospect of growing old, the fear of living with fewer material possessions and the fear that she has lost, and 635

17.12  Treating Suicidal Patients will not regain, “her sparkle” outweighs a prognosis that signals continued life will alarm and possibly horrify many, although I am satisfied that the ongoing discomfort of treatment, the fear of chronic illness and the fear of lifelong treatment and lifelong disability are factors that also weigh heavily in the balance for C. C’s decision is certainly one that does not accord with the expectations of many in society. Indeed, others in society may consider C’s decision to be unreasonable, illogical or even immoral within the context of the sanctity accorded to life by society in general. None of this however is evidence of a lack of capacity. The court being satisfied that, in accordance with the provisions of the Mental Capacity Act 2005, C has capacity to decide whether or not to accept treatment C is entitled to make her own decision on that question based on the things that are important to her, in keeping with her own personality and system of values and without conforming to society’s expectation of what constitutes the “normal” decision in this situation (if such a thing exists). As a capacitous individual C is, in respect of her own body and mind, sovereign.’10 As stated by Peter Jackson J in Newcastle Upon Tyne Hospitals Foundation Trust v LM: ‘There is no obligation on a patient with decision-making capacity to accept life-saving treatment, and doctors are neither entitled nor obliged to give it.’11 1 [2000] 1 AC 360, 369B; discussed at para 17.17 below. 2 [2002] EWHC 901 (Fam). 3 And see Re Z [2004] EWHC 2817, discussed at para 17.11 above. Where legal capacity had been found to be present there was no basis in law for prohibiting Mrs Z from taking her own life. As stated by Hedley J at para 14: ‘In the circumstances here, Mrs Z’s best interests are no business of mine.’ 4 [2009] WASC 229 (20 August 2009). 5 Ibid, para 40. 6 Ibid, para 49. 7 [1999] Fam 26 at 43. 8 [2014] Fam 161 at para 30. 9 [2015] EWCOP 80. 10 Ibid, para 97. 11 [2014] EWHC 454 (COP) and see the very helpful review on www.39essex.com at https:// bit.ly/39EC-260214; see also Nottinghamshire Healthcare NHS Trust v RC [2014] EWCOP 1317, (2014) Med LR 260 in which Mostyn J stated at para 8: ‘In principle, every citizen who is of age and of sound mind has the right to harm or (since 1961) to kill himself. This is an expression of the principle of the purpose of power found in the Declaration of the Rights of Man and of the Citizen (1793) and in John Stuart Mill’s essay On Liberty (1859) where he stated at pp14–15: “That the only purpose for which power can be rightfully exercised over any member of a civilised community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant … Over himself, over his body and mind, the individual is sovereign”.’ See also discussion at para 17.35 below and see Chapter 14: Religious Observance and Objections to Treatment, para 14.10 above.

17.13 Where it is clear that the suicidal actions are the result of a firm and irrevocable decision to end life, taken by an adult possessing the relevant degree of capacity, and that individual evinces a wish to be left to die, any attempt at resuscitation by a person knowing those facts is likely to be unlawful. There is, however, nothing to prevent anyone doing all in their power to persuade a suicidally inclined person to change their mind and to take steps to avoid the individual acquiring the means of self-destruction. In some circumstances, there will be a duty owed to the suicidally inclined individual to take reasonable care to prevent them from obtaining the means to commit or attempt suicide.1 1

Discussed at para 17.15ff below.

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Treating Suicidal Patients 17.16 17.14 In the case of children,1 or adults lacking the relevant capacity, the position is quite different. Those responsible for their care may, and almost certainly must, take all reasonable steps in their best interests to prevent acts of suicide. Further, in treating such patients their best interests will generally mandate that doctors act to preserve their lives despite any refusal of consent. In relation to adults who have a mental illness or disorder, the law may allow treatment following a refusal of consent if the adult is detained under the Mental Health Act 1983 (‘MHA’) and the treatment is considered to be for the patient’s mental illness or disorder, or a manifestation thereof, which the suicide attempt may be. This is so even if the illness or disorder does not in fact deprive the adult of capacity. In relation to an unconscious patient whose wishes are not known, in an emergency situation where action is immediately necessary to save life, lifesaving treatment can lawfully be administered under the Mental Capacity Act (‘MCA’) or (possibly) the common law doctrine of necessity. The debate as to which power applies should be an arid one, given that what is done in the name of necessity should be that which is in the patient’s best interests.2 1 A child might possess the relevant capacity under the Gillick principles, but those having parental responsibility would in any event have a right to seek to prevent suicide by a child. Further, the protective principles applied by the courts to restrict children’s autonomy would certainly come into play here. For a more general discussion of these principles, see Chapter 4: Deciding for Others – Children. The position of children is therefore considered here as being identical to others lacking legal capacity. 2 See para 17.35; Chapter 1: Consent – General, paras 1.20, 1.33, n2; Chapter 3: Deciding for Others – Adults, paras 3.10 and 3.11. Also see Alex Ruck Keene and Catherine Dobson’s comprehensive review at bit.ly/39EC-DoL-HGuide (Mental Capacity Law Guidance Note, 39 Essex Street).

F  PATIENT AUTONOMY VERSUS LIABILITY FOR FAILING TO ACT 17.15 More often than not – whether in textbooks or judgments – the question of suicidal patients’ capacity to refuse treatment is considered in a vacuum. We, however, feel it is unrealistic to address a doctor’s duty to respect a suicidal patient’s refusal of treatment without also considering that doctor’s liability for failure to protect a suicidal patient. Reviewing the totality of the legal position the hospital doctor may legitimately feel that they are in an impossible situation: a failure to protect the patient’s life may render them liable to civil, disciplinary or even criminal sanctions and yet conversely patient rights prevents treatment without consent. The doctor is placed between the rock of patient autonomy and the hard place of litigation. As stated by Michael Jones, ‘suicide is the supreme act of individual selfassertion’: ‘How can the law respect the individual’s claim to self-determination, while at the same time making someone else legally responsible for failing to prevent a suicide attempt?’1 1 Jones, Saving the patient from himself, Professional Negligence (September 1990).

17.16 A doctor will not be liable for a death resultant from a failure to act which stems from a capacitous patient’s refusal of consent to the doctor’s act. 637

17.16  Treating Suicidal Patients On the contrary, the doctor would have acted unlawfully had they overridden their patient’s refusal of consent in order to prevent their death. As stated by Lord Hoffmann in Reeves: ‘This argument is based upon the sound intuition that there is a difference between protecting people against harm caused to them by third parties and protecting them against harm which they inflict upon themselves. It reflects the individualist philosophy of the common law. People of full age and sound understanding must look after themselves and take responsibility for their actions. This philosophy expresses itself in the fact that duties to safeguard from harm deliberately caused by others are unusual and a duty to protect a person of full understanding from causing harm to himself is very rare indeed.’1 1

Reeves v Commissioner of the Metropolitan Police [2000] 1 AC 360 at 368C. See para 17.12 above noting Re W (Adult: Refusal of Treatment) [2002] EWHC 901 (Fam); Brightwater Care Group v Rossiter [2009] WASC 229; A NHS Trust v A [2015] EWCOP 80.

17.17 Although their duties cannot require them to override a patient’s autonomy, a doctor (and hospital or prison authorities) can be liable for a death resultant from a failure adequately to control the patient’s environment. The principle of autonomy has not prevented the courts from finding there to be a duty to make it more difficult for a person to end their own life, and in this context the fact that suicide was the result of a deliberate, autonomous decision has not prevented others from being held responsible for the consequences of that decision. In Reeves v Commissioner of the Metropolitan Police1 a man known to be at risk of suicide was held in police custody. Officers inadvertently left the flap of his cell door open and the deceased took advantage of this to create a mechanism on which he hung himself and died. The deceased was of ‘sound mind’. The House of Lords held that the deceased’s deliberate act did not break the chain of causation, where the police had a specific duty to take reasonable care for the safety of all those in custody. However, the deceased’s deliberate act was a factor to be considered when assessing contributory negligence, and ultimately reduced the level of damages owing to his family. Hoffmann LJ stated: ‘Autonomy means that every individual is sovereign over himself and cannot be denied the right to certain kinds of behaviour, even if intended to cause his own death. On this principle, if the deceased had decided to go on hunger strike, the police would not have been entitled to administer forcible feeding. But autonomy does not mean that he would have been entitled to demand to be given poison, or that the police would not have been entitled to control his environment in non-invasive ways calculated to make suicide more difficult. If this would not infringe the principle of autonomy, it cannot be infringed by the police being under a duty to take such steps.’2 Jauncey LJ also noted: ‘If an individual can do to his own body what he wills, whether by positive act or neglect then there can be no duty on anyone else to prevent his so doing … [T]he cases in which the principle has been recognised … were cases in which prevention of injury to health or death would have involved an unlawful physical invasion of the individual’s rights. In this case performance of the duty of care by closing the flap on the cell door from 638

Treating Suicidal Patients 17.19 which the Deceased hanged himself would have involved no invasion of any rights of the deceased.’3 1 Reeves v Commissioner of the Metropolitan Police [2000] 1 AC 360. 2 Ibid, 369B. 3 Ibid, 375B. In E v Somerset Partnership NHS Trust [2016] 1 WLUK 78 a fatal claim against a mental health service succeeded based on their negligent treatment of the 14-year-old deceased’s eating disorder. For a case in which the court rejected a claim in negligence based on a failure by a GP to prevent an attempted suicide, see PPX v Dr Aulakh [2019] EWHC 717 (QB). In NH v Abertawe Bro Morgannwg University Local Health Board (27 June 2016) a fatal claim based on a hospital’s alleged failure to prevent a suicide was rejected. In G v Higson [2020] WL 03513668 (19 March 2020) a fatal claim against a medical centre and a nurse practitioner following the suicide of a patient under their care was dismissed. In Baker v Cambridgeshire and Peterborough NHS Foundation Trust [2015] EWHC 609 (QB) an NHS trust was held not to have breached its duty of care in its conduct of psychiatric consultations with a man with bipolar affective disorder, or by not referring him to community mental health services, before he had committed suicide.

17.18 Nor was a deliberate act of (assisted) suicide found to break the chain of causation in the probably unique case of R v Berlinah Wallace.1 Ms Wallace threw sulphuric acid over her ex-boyfriend, Mr van Dongen, leaving him paralysed, visually impaired and in a permanent state of unbearable pain. He returned to his home country of Belgium, and within the law of that country he died by euthanasia. Belgian law included a requirement that his request for euthanasia be ‘voluntary’. The trial judge had decided his act in asking for euthanasia and the doctors’ actions in providing it were free and voluntary acts which broke the chain of causation, such that Ms Wallace could not be prosecuted for murder. The Court of Appeal disagreed, by recourse to the principle of criminal law that the question for the jury was whether the defendant’s actions were an operating and significant cause of the death. Civil cases dealing with questions of apportionment were held to be addressing different questions, and the court noted it had not been asked to consider any of the implications of cases on the so-called ‘right to die’. The court did however express a view on the ‘voluntariness’ of such an act of (assisted) suicide: ‘the jury may conclude on the very special facts of this case, that there was nothing that could decently be described as voluntary either in the suffering or in the decision by Mr van Dongen to end his life, given the truly terrible situation he was in.’ Had Mr van Dongen’s life been ended by a lethal injection given by a doctor in England, that would have been an act of murder by the clinician, although even that would not necessarily have broken the chain of causation such as to stop Ms Wallace being prosecuted for homicide. 1

[2018] 2 Cr App R 22. At a retrial, Ms Wallace was in fact acquitted of murder, but convicted of throwing a corrosive substance with intent, and sentenced to life.

17.19 Whether the duty of care goes further to protect those in someone’s care but who are not known to be a possible suicide risk was analysed in the case of Orange v Chief Constable of West Yorkshire.1 An argument that the specific duty to take reasonable steps to prevent harm extended to all prisoners was rejected by the Court of Appeal who confirmed that the specific duty only arose where the risk of self-harm was known or should have been known in an individual case. In Savage v South Essex Partnership NHS Foundation Trust2 a similar duty to that defined in Reeves was imposed upon medical authorities – under Art 2 639

17.19  Treating Suicidal Patients of the ECHR – to do all they reasonably can to prevent a suicide where there is a ‘real and immediate risk to life’ of a detained patient under their care and control. Rabone v Pennine Care NHS Trust3 made clear that this duty extended beyond detained patients, to all vulnerable patients in the care of a hospital where the immediate risk of self-harm is – or should be – known. 1 2 3

[2002] QB 347. The test was applied in Smiley v Home Office [2004] EWHC 240. [2009] 1 AC 681. [2012] UKSC 2.

17.20 Capacity, soundness of mind or ‘voluntariness’ does not appear to have any role in determining when liability will be imposed on a third party for a person’s deliberate suicide, albeit that in civil cases these concepts will have a role in determining the degree of contributory negligence of the deceased.1 1

Or, as more accurately phrased in US jurisprudence: in assessing the ‘comparative negligence’ of the defendant doctors it will be necessary to assess the capacity and sanity of the patient. Put shortly, the saner the patient, the lower the percentage damages the defendant will have to pay. See also the House of Lords case of Corr v IBC Vehicles Ltd [2008] 2 WLR 499, where the deceased was not a known suicide risk at the time of the negligence and the issue of capacity went to the issue of contributory negligence and not primary liability.

17.21 Their Lordships’ formulation in Reeves – which defines permissible steps as those which do not interfere with patient autonomy – in fact leaves the line for doctors blurred. Excessive interference with a patient’s environment could constitute an infringement of that patient’s autonomy. In Keenan v UK1 the European Commission on Human Rights, in considering the appropriate regime to safeguard prisoners’ lives, noted that: ‘it would run counter to other fundamental rights guaranteed under the Convention – the right to respect for private life and potentially the prohibition against torture and inhuman and degrading treatment – to impose a regime with the rigorous controls necessary to render any selfinjurious attempts impossible.’2 1 2

(2001) 33 EHRR 38. Ibid, para 79.

17.22 The imposition of liability based on fine distinctions between acts and omissions troubled Kay J in R v Dr Collins and Ashworth Hospital Authority, ex p Brady.1 The case concerned the ‘Moors Murderer’ Ian Brady. In the course of argument, the question was raised as to whether a prisoner who was engaged in a hunger-strike could be force-fed even if he had capacity and was not capable of being lawfully force-fed under s 63 of the MHA. It was argued for the respondent that the right to self-determination was not absolute and that it had to be balanced against public interests2 such as: ●● ●● ●● ●●

the preservation of life; the prevention of suicide; the maintenance of the integrity of the medical profession; institutional discipline.3

1

[2000] Lloyd’s Med LR 355 (discussed also in relation to the test under s 63 of the MHA: see Chapter 13: Feeding). 2 Note Thor v Superior Court (1993) 5 Cal 4th 725, Supreme Court of California (refusal of food by a quadriplegic prison inmate). The right of self-determination was held to prevail but four potential countervailing state interests were noted: ‘preserving life, preventing suicide, maintaining the integrity of the medical profession and the protection of innocent third parties’. In McNabb v Department of Corrections 163 Wn 2d 393 (2008) the Washington State Supreme Court held that the State’s interests in applying a force-feeding policy to a prisoner

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Treating Suicidal Patients 17.24 outweighed his right to refuse artificial means of nutrition and hydration. Madsen J concurring said that a prisoner had ‘no right to starve himself to death by refusing sustenance while in the custody of the State this is not a privacy right that citizens of the state hold or expect to hold.’ Sanders J dissented, arguing ‘this case is about “the most comprehensive of rights and the right most valued by civilized men,” namely, “the right to be let alone”.‘ See Chapter 2: Consent & Capacity – Adults, para 2.19; Chapter 14: Religious Observance and Objections to Treatment, para 14.2. 3 It was argued that institutional discipline would be undermined ‘if detained persons had the right to self-harm, or to commit suicide or to protest against their circumstances by the use of hunger strikes and the refusal of medical treatment’.

17.23 While Kay J ultimately determined that it was not possible on the facts of the case to decide the point, his observations are of interest. Kay J felt that if Secretary of State for the Home Department v Robb1 stood alone, the respondent’s argument would be difficult to sustain. However, the judge determined that the Reeves decision had an important impact on the jurisprudence in this area particularly in considering whether in fact autonomy should prevail. He stated: ‘It would be somewhat odd if there is a duty to prevent suicide by an act (for example, the use of a knife left in a cell) but not even a power to intervene to prevent self-destruction by starvation. I can see no moral justification for the law indulging its fascination with the difference between acts and omissions in a context such as this and no logical need for it to do so. ‘It seems to me that if one were dealing with a physically fit man with capacity but who is detained in hospital for medical treatment for mental illness or disorder, there should be circumstances in which state or public interests … would properly prevail over a self-determined hunger strike so as to enable, even if not to require, intervention.’2 While stressing that he was not deciding the point, Kay J expressed the view that authority did not appear to require him to find that autonomy was paramount, stating: ‘it would seem to me to be a matter for deep regret if the law has developed to a point in this area where the rights of a patient count for everything and other ethical values and institutional integrity count for nothing.’3 1 [1995] 1 FLR 412. 2 Para 71. 3 Para 73; we are, however, unaware of any cases in the English courts in which it has been determined that a capable person should not be allowed to starve him or herself to death because it offends the public interest. This includes a case involving one of the authors in which there was a significant public interest in an alleged murderer not starving himself to death before trial.

G  EUROPEAN CONVENTION ON HUMAN RIGHTS: DUTY TO PRESERVE LIFE 17.24 Kay J’s preferred approach is mirrored in the decisions under the European Convention. The Commission has held that force-feeding a prisoner who was on hunger strike was not a breach of the right to freedom from inhuman and degrading treatment (Art 3).1 It concluded, given that Art 2 (the right to life) imposes ‘in certain circumstances’ a duty to take positive action to preserve life, that it was incumbent on the State in particular to take: ‘active measure to save lives when the authorities have taken the person in question into their custody.’ 641

17.24  Treating Suicidal Patients However, the force-feeding of a prisoner in Nevmerzhitsky v Ukraine2 was a breach of Art 3 where the detaining authorities had failed, at the time of providing the treatment, convincingly to demonstrate the medical necessity for such acts. 1 In X v Germany (1984) 7 EHRR 152 at 153. 2 (2006) 43 EHRR 32.

17.25 In Keenan v UK,1 it was noted that Convention case law establishes that Art 2 (the right to life) is not exclusively concerned with intentional killing by the use of force by agents of the State but also imposes a positive obligation on the State to take appropriate steps to safeguard lives. The European Commission on Human Rights determined that prison authorities had an obligation under Art 2 to take appropriate steps to safeguard the lives of the prisoners under their control: ‘When depriving an individual of his liberty, the authorities thereby assume a responsibility for his welfare, the individual’s autonomy to undertake that responsibility for himself having been largely removed.’2 1 2

(2001) 33 EHRR CD 362. See also R (Middleton) v West Somerset Coroner [2004] 2 AC 182; R (Sacker) v West Yorkshire Coroner [2004] 1 WLR 796; R (Takoushis) v Inner North London Coroner [2006] 1 WLR 461. Keenan, ibid, para 79.

17.26 The approach adopted in Keenan,1 imposing a positive obligation to protect prisoners whose lives are in danger, applies to patients detained under the MHA and acutely vulnerable patients who are not detained under the MHA but who arguably could be. In Savage v South Essex Partnership NHS Foundation Trust2 the House of Lords considered the scope of Art 2 in a case where Mrs Savage, a woman with a diagnosis of paranoid schizophrenia, absconded from hospital and took her own life while being detained for treatment under s 3 of the MHA. In applying the reasoning in Keenan the court held that where the medical authority knew, or ought to have known, that an individual patient was a suicide risk and there was a ‘real and immediate risk to life’, Art 2 requires those caring for the patient to do all that could reasonably have been expected of them to prevent the suicide from occurring. 1 See para 17.25, n1 above. 2 [2009] 2 WLR 115.

17.27 However, in Keenan1 the Commission recognised that limits have to be placed on the obligation to interfere and intervene. No regime which respects prisoners or patients as human beings can ensure that no attempts are made to self-harm. Just as in Keenan, the court in Savage2 was mindful of the competing claims of personal autonomy and the need to take these into account when considering the scope and nature of any interference required. It was in relation to those rights of liberty and autonomy that Baroness Hale observed: ‘… the steps taken must be proportionate. If this is so in prison, it must even be more so in hospital, where the objectives of detention are therapeutic and protective rather than penal.’3 Lord Scott stated that it behove the hospital to: ‘… respect their personal autonomy and to impose restrictions on them to the minimum extent of strictness consistent with the need to protect them from themselves … the hospital were, in my opinion, entitled, and perhaps 642

Treating Suicidal Patients 17.30 bound, to allow Mrs Savage a degree of unsupervised freedom that did carry with it some risk that she might succeed in absconding. They were entitled to place a value on her quality of life in the Hospital and accord a degree of respect to her personal autonomy above that to which prisoners in custody could expect.’4 1 See para 17.25, n1 above. 2 Savage v South Essex Partnership NHS Foundation Trust [2009] 1 AC 681. 3 Ibid, para 100. 4 Ibid, para 13.

17.28 Savage1 only examined the scope of Art 2 in relation to detained patients. However, the reasoning in the judgments was extended in Rabone2 to patients admitted informally to psychiatric settings (as was the case originally for Mrs Savage). In Rabone, a voluntary psychiatric patient was allowed home for two days in circumstances where there was a real and immediate risk of her death. She hanged herself while on leave. The Supreme Court considered that the difference between her situation and that of a patient compulsorily detained under the MHA was one of ‘form not substance’, where if she had insisted on being discharged she could and should have been detained under the MHA, and had she been refused permission to leave, she would not have insisted upon it. The hospital trust had assumed responsibility for her care and by reason of her mental state, she was extremely vulnerable. In theory, the same reasoning could apply to an acutely vulnerable patient admitted to a general hospital, provided their mental state was known. 1 See para 17.26, n2, above. 2 Rabone v Pennine Care NHS Trust [2012] UKSC 2.

17.29 In terms of imposing liability in any given case, the threshold for triggering the duty is high. There must be a risk to life. That risk must be real and immediate – in Keenan1 it was obvious that the risk of suicide was real but there was no particular indication on the day in question. Those responsible must also be aware of the risk at the time – not sooner or later.2 Lord Dyson in Rabone endorsed an interpretation of ‘real’ as ‘substantial or significant, and not remote or fanciful’ and, although warning of the pitfalls of putting a gloss on the meaning of ‘immediate’, stated: ‘I think that the phrase “present and continuing” captures the essence of its meaning.’3 1 See para 17.25, n1 above; see also Orange v Chief Constable of West Yorkshire [2002] QB 347 in which the Court of Appeal adopted the threshold of ‘a significantly increased suicide risk’ (at para 48). 2 Van Colle v Chief Constable of the Hertfordshire Police [2009] 1 AC 225. 3 See Rabone v Pennine Care NHS Trust [2012] UKSC 2 at paras 38–39.

17.30 The legal test formulated in Reeves,1 Savage2 and Rabone3 thus predicates a duty to prevent suicide on the awareness of risk. There is a gap between this approach and the actual ability of professionals to foresee accurately and protect against such risk. The National Confidential Inquiry’s 2019 annual report noted that ‘the immediate risk of suicide at the time of final service contact was judged by clinicians to be low or not present for the majority of patients who died by suicide.’ Their recommendation was that ‘risk assessment tools should not be seen as a way of predicting future suicidal behaviour’.4 643

17.30  Treating Suicidal Patients Further, the Inquiry’s 2017 survey into suicide by children and young people specifically addressed the worrying prevalence of so-called ‘out of the blue’ suicides in the young. Out of 316 deaths by suicide in children and young people under 20, and an estimated 124 deaths by suicide in the 20–24 age group, 29% and 35% respectively had never expressed suicidal thoughts or previously self-harmed.5 1 2 3 4

Reeves v Commissioner of the Metropolitan Police [2000] 1 AC 360. Savage v South Essex Partnership NHS Foundation Trust [2009] 1 AC 681. Rabone v Pennine Care NHS Trust [2012] UKSC 2. The National Confidential Inquiry into Suicide and Safety in Mental Health, Annual Report: England, Northern Ireland, Scotland and Wales, University of Manchester, 2019: see bit.ly/ Uni-Manc-Sucide-2019. 5 National Confidential Inquiry into Suicide and Homicide by People with Mental Illness, Suicide by children and young people, University of Manchester, 2017: https://bit.ly/UniManc-Sucide-2017.

H  EUROPEAN CONVENTION ON HUMAN RIGHTS: THE BALANCE TO BE STRUCK 17.31 In assessing the approach of the law to the difficult balance to be struck between individual self-determination and the need to protect the vulnerable, it should be noted that the Convention, by Art 2 (the right to life), imposes a positive obligation on the State to protect and preserve life.1 In this context, and as demonstrated in Savage2 and Rabone,3 there are discrete aspects to this obligation. First, there is a general duty to have proper systems in place for providing a safe health care service. Secondly, there is a duty to protect vulnerable individuals, whether detained under the MHA or not, from a ‘real and immediate risk’ to their lives. This duty involves taking all reasonable steps to reduce that risk. This Art 2 obligation would provide support for a doctrine of necessity4 in taking steps immediately to preserve life – whether by preventing someone from jumping out of a window or binding up someone’s bleeding wrists – even in circumstances which ostensibly do not accord with the general presumption of capacity in English law. Thus, there is scope for using the Convention to argue for legitimate and limited departures from the otherwise immutable principle of autonomy. English law could be developed (or current law explained) in accordance with the reasoning of Justice Stevens in the US Supreme Court that: ‘… the value to others of a person’s life is far too precious to allow the individual to claim a constitutional entitlement to complete autonomy in making a decision to end that life.’5 1

McCann v UK (1995) 21 EHRR 97 (Art 2(1) imposes a positive obligation on States both to refrain from taking life intentionally and to take appropriate steps to safeguard life). See also Andronicou and Constantinou v Greece (1998) 25 EHRR 491. 2 Savage v South Essex Partnership NHS Foundation Trust [2009] 1 AC 681. 3 Rabone v Pennine Care NHS Trust [2012] UKSC 2. 4 See Chapter 3: Deciding for others – Adults, para 3.10 above. 5 Washington v Glucksberg 521 US 702 (1997): the US Supreme Court declared that a Washington law prohibiting physician-based suicide was not unconstitutional.

17.32 There is support in Savage for such a development, although the comments of Lord Rodger, as already noted, are in the context of prisoners, and are yet to be worked out in the context of patients, vulnerable or otherwise: ‘… the need to respect the autonomy of prisoners remains. Nevertheless, so far as the individual prisoner or conscript is concerned, the immediacy of 644

Treating Suicidal Patients 17.34 the danger to life means that, for the time being, there is, in practice, little room for considering other, more general, matters concerning his treatment. There will be time enough for them, if and when the danger to life has been overcome. In the meantime, the authorities’ duty is to try to prevent the suicide.’1 1

Savage v South Essex Partnership NHS Foundation Trust [2009] 1 AC 681, para 42.

I  PRACTICAL PROBLEMS 17.33 As set out above, there is a stark tension in the law between the desire to ensure that vulnerable people are afforded the best possible care, and the operation of the right of autonomy protected by Art 8 of the ECHR. It is difficult – if not impossible – for doctors in practice to navigate through the conflicting autonomy and negligence jurisprudence. About 220,000 people present each year at hospital accident and emergency departments in the UK following acts of deliberate self-harm.1 In 2018 there were 6,507 completed suicides in the UK.2 From 2001 to 2018, the leading cause of death for both men and women aged 20–34 was suicide and injury or poisoning of undetermined intent.3 Accident and Emergency staff are in the front line of the treatment of those who have attempted suicide. Often little thought is given to the legal basis on which such patients are treated. Three particular illustrations of the legal and ethical dilemmas may assist: ●●

●●

●●

First, given that it is presumed that adults have capacity if, following a drugs overdose, an unconscious adult is taken by ambulance to the Accident and Emergency Department, have they not, by the very fact of taking the overdose, indicated that they do not want to receive any treatment and that they want to die? Secondly, if an adult presents at the Accident and Emergency Department with bleeding wounds having attempted to kill themselves, and they say they do not want their wounds to be bound, would binding the wounds be unlawful? Thirdly, if an adult patient who has been assessed as capacitous and is voluntarily in hospital starts to run towards a window, would it be an unlawful assault for a doctor to rugby-tackle them to prevent them from jumping out of the window?

1

University of Manchester: www.mash.bmh.manchester.ac.uk/epidemiology-and-risk-factors/. Note further the findings of Clements et al that: ‘There was a consistent underestimation of presentations for self-harm recorded by [Hospital Episode Statistics in English] emergency department data’: ‘Rates of self-harm presenting to general hospitals: a comparison of data from the Multicentre Study of Self-Harm in England and Hospital Episode Statistics’: https:// bit.ly/BMJ-2015-Clements. 2 Office of National Statistics: Suicides in the United Kingdom: 2018 registrations: see bit.ly/ ONS-Suicide-2018. 3 Office of National Statistics: Leading causes of death, UK: 2001–2018: see bit.ly/ONSLeading-Cause.

17.34 The first type of patient – an unconscious adult who has taken a drugs overdose – is the most easily addressed legally. In emergency situations

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17.34  Treating Suicidal Patients where it is not possible to determine a patient’s views (whether because they are unconscious or incoherent) and no valid advance decision is known, lifesaving treatment can be given under the MCA (or potentially the doctrine of necessity).1 Further, attempted suicides are often ‘cries for help’: the ultimate intention of the person is not in fact to die. How then is a doctor in Accident and Emergency to distinguish between patients who are ‘genuine’ suicides from those that are ‘cries for help’? Quite simply, they cannot,2 and must therefore treat the patient on the basis of the MCA or the doctrine of necessity.3 1 See Chapter 3: Deciding for Others – Adults, para 3.10. The only exception would relate to unusual circumstances in which it would be considered that saving the patient’s life was not in their best interests. 2 This approach is supported by research findings on 34 ‘self-poisoners’ which determined that only around 40% of such patients themselves in fact expressed a wish to die: see James and Hawton, Overdoses: Explanation and Attitudes in Self-Poisoners and Significant Others (1985) 146 British Journal of Psychiatry 481–485. And see Chapter 3: Deciding for Others – Adults, para 3.4, Chapter 5: Restraint and Deprivation of Liberty, para 5.3. 3 See Chapter 3: Deciding for Others – Adults, para 3.10.

17.35 As to the second exemplar – the conscious patient who refuses treatment for his bleeding wounds – the general principle outlined above ostensibly provides the simple answer that, unless the patient is known to be incapacitous, treatment is prohibited. In Bland it was asserted that the principle of sanctity of life is not an absolute one: ‘It does not compel a medical practitioner on pain of criminal sanctions to treat a patient who will die if he does not, contrary to the express wishes of the patient.’1 However, while it may be easy for Supreme Court judges and legal authors to assert the paramountcy of autonomy, it is another for a doctor to watch someone die. As stated by JA Strauss: ‘What doctor will fail to render medical aid to a person who has cut his pulses in a suicide attempt and is bleeding to death?’2 Nevertheless, the MCA and the case law is clear on the requirement to determine a lack of capacity before acting. MCA s 5 states: ‘(1) If a person (“D”) does an act in connection with the care or treatment of another person (“P”), the act is one to which this section applies if– (a) before doing the act, D takes reasonable steps to establish whether P lacks capacity in relation to the matter in question, and (b) when doing the act, D reasonably believes– (i) that P lacks capacity in relation to the matter, and (ii) that it will be in P’s best interests for the act to be done. ‘(2) D does not incur any liability in relation to the act that he would not have incurred if P– (a) (b)

had had capacity to consent in relation to the matter, and had consented to D’s doing the act.’3

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Treating Suicidal Patients 17.35 Thus, given the presumption of capacity,4 it appears a clinician will only be granted the protection afforded by s 5 of the MCA if: ●●

reasonable steps have been taken to establish whether the patient lacks capacity; then it is considered that the patient does lack capacity; and then treatment is undertaken in the patient’s best interests.5

●● ●●

When reviewing emergency treatment it is to be hoped that the courts will take a realistic view of what comprise ‘reasonable steps’ when a clinician is under very significant time pressures. However, the crux must be a determination that the patient lacks capacity. In Nottinghamshire Healthcare NHS Trust v RC6 Mostyn J stated: ‘The Hippocratic duty to seek to save life, or the benign but paternalistic view that it is in someone’s best interests to remain alive must all surely be subservient to the right to sovereignty over your own body’7 and that: ‘it would be an abuse of power in such circumstances even to think about imposing a blood transfusion on RC having regard to my findings that he presently has capacity to refuse blood products and, were such capacity to disappear for any reason, the advance decision would be operative. To impose a blood transfusion would be a denial of a most basic freedom.’8 Nevertheless, whilst the presumption of capacity9 indicates that treatment of a patient with bleeding wounds would be an assault, there is a possible argument which might be run that – even in the face of an apparent refusal of consent – immediate emergency treatment limited solely to saving life can be lawful under the MCA or on the ground of necessity:10 ●●

●●

●● ●● ●● ●●

In circumstances where someone has presented having harmed himself, the presumption of capacity may be rebutted by the evidence that the person has engaged in an act which suggests a temporary lack of capacity. A patient now has the ability to make an advance decision refusing future treatment, provided the requirements of the statute are met;11 and a choice not to make such a decision suggests a willingness to leave clinical decisions in the hands of the treating doctors in an emergency situation. Art 2 of the ECHR requires the doctor to do all that can reasonably be expected to preserve life. A doctor has a defence under s 5 of the MCA if he holds a reasonable belief that (a) the patient did lack capacity and (b) the treatment was in the patient’s best interests.12 If there is doubt as to a person’s capacity, a thorough capacity assessment should be undertaken by an appropriate professional, but in the meantime the person should be treated in his best interests.13 The MCA or doctrine of necessity may therefore protect a doctor who takes the minimum steps necessary in a true emergency situation to preserve life.

It should be stressed that this is a possible argument and has in no way been tested or approved in the courts. Some limited support for it is, however, found in Savage,14 where the underlying vulnerability of the patient (and, interestingly, 647

17.35  Treating Suicidal Patients not the status of the patient requiring protection) was deemed to be the key determinant. Ultimately, though, if JA Strauss is correct in stating that: ‘It is generally accepted that the conduct of a person such as a policeman – or any other person – who endeavours to prevent a prospective suicide from ending his life, is not only lawful but in fact praiseworthy’15 then it may well require Parliament to legislate to change – or to give clarity to – the law in order to protect those whom society wants to act to help save those who harm themselves or attempt suicide.16 1 Page 1031A. 2 ‘Legal Questions Surrounding Hunger Strikes by Detainees and Prisoners’ (1991) 10 Med L Rev 211–218. 3 See Chapter 3: Deciding for others – Adults, para 3.10 above. 4 See Chapter 2: Consent & Capacity – General, para 2.8: presumption of capacity, above. 5 See n3. 6 [2014] EWCOP 1317, (2014) Med LR 260; and see Newcastle Upon Tyne Hospitals Foundation Trust v LM [2014] EWHC 454 (COP) and para 17.12 above and Chapter 14: Religious Observance and Objections to Treatment, para 14.10 above. 7 Ibid, para 26. 8 Ibid, para 42. See Kerrie Wooltorton, a 26-year-old suffering from depression, took poison intending to commit suicide. On being taken to hospital she handed the doctors a ‘living will’ which instructed the medical staff to make her comfortable but take no steps to save her life. Facing prosecution if they interfered, the doctors allowed her to die. It is thought to be the first time a living will has been used to commit suicide. (Daily Telegraph, 1 October 2009): http:// bit.ly/29JRgfN. Additionally, note the protection afforded doctors who are in ignorance of an advance decision: MCA s 26(2) allows a doctor to raise as a defence to any charge of assault the assertion that they acted in good faith in ignorance of an advance refusal of treatment. 9 MCA s 1(2). 10 See Chapter 3: Deciding for Others – Adults, para 3.10 above. 11 See Chapter 2 Consent & Capacity – Adults, paras 2.32–2.42 above for the position in relation to advance decisions. And see Kerrie Wooltorton (n8 above). Note also Newcastle Upon Tyne Hospitals Foundation Trust v LM (n6) in which Mostyn J additionally noted three categories of patients who may be treated without their consent: (1) those lacking capacity, (2) those treated under s 63 of the MHA and those ‘adults who have capacity but who can be categorised as “vulnerable” and who as a consequence of their vulnerability have been robbed of the ability to give a true consent to a certain course of action, may also have treatment or other measures imposed on them in their best interests pursuant to the inherent jurisdiction of the High Court (see DL v A Local Authority [2012] 3 WLR 1439, and Re SA (Vulnerable adult with capacity: marriage) [2006] 1 FLR 867)’. 12 See above in this paragraph; see para 17.14 above and in particular para 17.14, n2. See Alex Ruck Keene and Catherine Dobson’s illuminating review previously on www.39essex.com at para 65: ‘It is suggested, however, that the common law defence of necessity will only avail a person who is able to show that they were confronted with the need to deprive the incapacitated adult of their liberty in a true emergency position where (a) it was not possible to seek the assistance of the Court of Protection either before or during the currency of that deprivation of liberty; (b) no other statutory power existed upon which reliance could be placed (for instance s 17 PACE 1984 or s 135 MHA 1983); and (c) where it was necessary so to do to preserve them from serious harm.’ 13 Taking into account the requirement under the MCA Code of Practice to ‘assess people when they are in the best state to make the decision if possible’: MCA Code of Practice para 4.46. 14 Savage v South Essex Partnership NHS Foundation Trust [2009] 1 AC 681. Allen argues that the implications of Savage could mark a radical departure from the current common law position and impose a professional duty to act whenever a doctor is aware of a real and immediate risk to a particular man’s life: Saving Life and Respecting Death: A Savage Dilemma (2009) 13(2) Med L Rev 262–273 (4 May 2009). 15 n2 above: Strauss notes that ‘social disapproval of suicide is still strong in many societies’ and ‘such conduct would accordingly not constitute assault. Juridically the rescuer’s act is justified on the basis of necessity’ and he also notes the view of Van Der Westhizen that, under South African law, there is an entitlement to save a person’s life ‘even if it is against the will of the person rescued’.

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Treating Suicidal Patients 17.37 16 In Re C (Deceased) [2016] EWCOP 21 following a hearing regarding capacity the court was required to determine the applicable duration of reporting restrictions. The court had previously determined that P had capacity to make the decision as to what medical treatment they did not want (which would ultimately be life ending). The individual case had generated significant media attention and reporting restrictions were put in place that ended on P’s death. In the case that followed, after death, the court confirmed that reporting restrictions in serious medical cases can extend beyond death and there is no presumption or default position that such orders end on P‘s death. On the facts of this case the reporting restrictions order was extended ‘until further order of the court’.

17.36 If an adult patient who has been assessed as capacitous and is voluntarily in hospital starts to run towards a window, would it be an unlawful assault for a doctor to rugby-tackle him to prevent him from jumping out the window? The answer to this third dilemma mirrors that given to the second. It is likely that the law would answer that question by stating that the action of rugby-tackling the patient was lawful. Again, the wider doctrine of necessity comes into play. Importantly, in addition to all of the points made above1 it is potentially dangerous to others for a patient to jump out of a window.2 Thus in acting to prevent this suicide attempt the doctor is of necessity ‘assaulting’ the patient to prevent potential harm to others and is therefore acting lawfully. Further, even in a differing factual scenario in which the focus would solely be on protecting the patient from himself – for example, in restraining a patient from using a blade on his wrists – the protective public policies behind the decision in Reeves and discussed in Brady surely mandate physical intervention to prevent the act of suicide or self-harm. Given these public policy imperatives, justification again may be found for the notional assault under the doctrine of necessity.3 1 See para 17.35 above. 2 See para 17.41, n6 below. 3 See Chapter 3: Deciding for Others – Adults, para 3.10 above.

J  COMPULSORILY DETAINED PATIENTS 17.37 The extensive protections in place in relation to the treatment of patients compulsorily detained under the MHA are outside the scope of this book. However, no consideration of the issues concerning treating ‘suicides’ and those engaged in self-harm can be complete without reference to a doctor’s power to treat those detained under the Act without their consent. As detailed throughout this book, the law presents hospitals and doctors with difficult ethical and practical problems as to issues of capacity and consent. The major ethical problem is the need, if a patient lacks capacity, to determine whether treatment is in the patient’s best interests. The major practical problem is the requirement for the doctor to determine whether or not a patient in fact has capacity. In relation to patients compulsorily detained under s 3 of the MHA, the law ostensibly relieves the doctor of the practical problem of weighing up the difficult questions concerning whether a patient has capacity to refuse treatment. That is because by s 63 of the Act, a doctor can provide such a patient with treatment1 for ‘the mental disorder from which he is suffering’ even if the patient has capacity and refuses to consent to the treatment. 1 Treatments specified under s 57 or 58 (for example treatments destroying brain tissue; longterm administration of medicine) are not included. It should also be noted that there are further safeguards in the MHA that must be applied if s 63 is to be used on a long-term basis; these are outside the scope of the book.

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17.38  Treating Suicidal Patients 17.38 The case-law concerning s 63 demonstrates the courts’ historically wide interpretation of the section. The Court of Appeal in B v Croydon Health Authority1 considered the meaning of this section: was treatment within s 63 limited to the core treatment directed at the mental disorder (for example, psychotherapy) or did it extend to treatment for the symptoms or consequences of a mental disorder? B had a mental disorder known then as borderline personality disorder. She engaged in self-harming behaviour. She was compulsorily detained under s 3. Other methods of self-harming having been removed by the hospital, Ms B resorted to starvation. As her physical condition deteriorated, her doctor informed her that he would consider force-feeding to prevent her death. Through the MIND representative at the hospital, Ms B sought legal assistance. She was granted an ex parte injunction restraining the hospital from feeding without consent. Following a hearing, which included evidence from Ms B herself, Thorpe J determined that: ●● ●● 1

Ms B had capacity to refuse to eat; and nonetheless by s 63 it was lawful for the hospital to feed her by means of naso-gastric tube without her consent. [1995] 1 All ER 683 and see Chapter 13: Feeding, above.

17.39 The Court of Appeal considered whether such tube feeding was treatment for Ms B’s mental disorder. The Act as then worded defined ‘medical treatment’ as including ‘nursing … care, rehabilitation under medical supervision’,1 thus indicating a significant range of acts ancillary to core treatment. It was held that treatment within s 63 included nursing and care: ●● ●● ●● ●●

concurrent with the core treatment; or as a necessary prerequisite to such treatment; or to prevent the patient from causing harm to themself; or to alleviate the consequences of the mental disorder.

As Ms B’s self-harming behaviour and therefore her refusal to eat were products of her mental disorder, the proposed medical treatment, namely nasogastric tube feeding, was treatment within s 63 and could be performed without the patient’s consent. 1

MHA, s 145(1).

17.40 The B decision was followed by Re VS (Adult: Mental Disorder).1 The patient had a history of trying to harm herself. She was formally admitted under s 3 of the MHA. She refused liquid or food and there was a real risk that she could die from renal damage. The Trust sought a declaration declaring that forced tube feeding and/or intravenous hydration would be lawful. The court held that such treatment would be lawful: it was clear that she was suffering from a major depressive illness and her refusal to eat or drink was a product of this disorder; thus, by virtue of s 63 of the MHA it would be permissible for the hospital to hydrate or feed the patient artificially. 1

[1995] 3 Med L Rev 292.

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Treating Suicidal Patients 17.41 17.41 After these cases, the language of s 145(1) was amended by the Mental Health Act 2007, so that it is clear that treatment for the symptoms or manifestations of mental disorder is permissible under s 63: Section 145(4): ‘Any reference in this Act to medical treatment, in relation to mental disorder, shall be construed as a reference to medical treatment the purpose of which is to alleviate, or prevent a worsening of, the disorder or one or more of its symptoms or manifestations’. Thus, a doctor can use s 63 to treat a detained patient who has capacity, regardless of whether the patient consents, if the treatment is to alleviate the symptoms of a mental disorder.1 It should be noted that in any given case, the question must be asked of the psychiatrists involved in the treatment whether in their opinion the treatment is treatment for mental disorder. In the case of Dr A2 the hunger-striking patient suffered from a delusional disorder. The psychiatrist in charge of his care considered that the purpose of the force-feeding treatment was to treat a physical disorder (starvation), which was a ‘consequence’ of Dr A’s delusional disorder, but not a symptom or manifestation of it – in contrast to an anorexic patient, where starvation would clearly be a symptom or manifestation of the anorexia. The court found this analysis persuasive and on this basis distinguished the case from Brady3 and B v Croydon Health Authority.4 It should be noted that the court found a different way to authorise the treatment, using the High Court’s inherent jurisdiction. In Nottinghamshire Healthcare NHS Trust v RC5 Mostyn J granted a declaration that it was lawful not to use s 63 of the MHA to provide a blood transfusion to a Jehovah’s Witness who would slash his wrists and therefore die, but had capacity to refuse the transfusion. Mostyn J considered the position generally under s 63, stating: ‘At first blush section 63 strikes one as an illiberal provision, given that it applies to all detained mentally ill patients who may well not lack capacity (as here). However, it can be well justified when one reflects that the treatment in question may be needed not merely for the protection of the patient but also for the prevention of harm to others, given the violent eruptions to which mental illness can give rise.’6 It was important that such decisions could, nevertheless, be subject to review: ‘A positive decision to impose non-consensual medical treatment pursuant to section 63 of the MHA is a public law decision susceptible to judicial review: see R (on the application of B) v Haddock (Responsible Medical Officer)[7] … that decision make[s] clear8 that convention rights will be in play and therefore a “full merits review” must be undertaken on the evidence, with the court making the decision de novo, but placing considerable weight on the initial decision made under section 63 by the approved clinician in charge of the treatment.’9 Mostyn J considered that it would be ‘truly bizarre’ if there was no such review when a decision not to impose life-saving treatment under s 63 was taken: ‘especially where one considers that the negative decision may have far more momentous consequences (ie death) than the positive one.’10

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17.41  Treating Suicidal Patients and concluded: ‘… where the approved clinician makes a decision not to impose treatment under section 63, and where the consequences of that decision may prove to be life-threatening, then the NHS trust in question would be well advised, as it has here, to apply to the High Court for declaratory relief.’11 In RC there was a dispute between the parties and the experts as to whether administration of a blood transfusion following an episode of self-laceration was ‘treatment of a symptom or manifestation of RC’s mental disorder or treatment of a consequence of it’ within s 63. Mostyn J concluded that treating RC’s self-inflicted wounds would be treatment within s 63: ‘It cannot be disputed that the act of self harming, the slashing open of the brachial artery, is a symptom or manifestation of the underlying personality disorder. Therefore to treat the wound in any way is to treat the manifestation or symptom of the underlying disorder. So, indisputably, to suture the wound would be squarely within section 63. As would be the administration of a course of antibiotics to prevent infection. A consequence of bleeding from the wound is that haemoglobin levels are lowered. [I]t is my view that to treat the low haemoglobin by a blood transfusion is just as much a treatment of a symptom or manifestation of the disorder as is to stitch up the wound or to administer antibiotics.’12 Nevertheless, given RC’s capacity to take decisions and given his religious views, Mostyn agreed with the treating doctor’s decision not to impose a blood transfusion on RC in order to treat self-inflicted wounds, stating: ‘In my judgment it would be an abuse of power in such circumstances even to think about imposing a blood transfusion on RC having regard to my findings that he presently has capacity to refuse blood products and, were such capacity to disappear for any reason, the advance decision would be operative. To impose a blood transfusion would be a denial of a most basic freedom.’13 Given these cases and the widening of the statutory language, past suggestions14 that the MHA cannot authorise treatment for physical disorders are now an oversimplification. While it is correct that detention under the Act is only lawful for the treatment of ‘mental disorder’, if a physical disorder or condition is the product or symptom of the mental disorder for which the patient is detained, then medical treatment for that physical disorder or condition is lawful. Thus, bandaging the cut wrists of a suicidally depressed s 3 patient without consent may be lawful by virtue of s 63. 1 See, however, para 17.37 above, n1: the detailed workings of the 1983 Act are outside the scope of this book. 2 [2014] Fam 161, and see para 17.12 above. 3 R v Dr Collins and Ashworth Hospital Authority, ex p Brady [2000] Lloyd’s Med LR 355. 4 [1995] 1 All ER 683 and see Chapter 13: Feeding. 5 [2014] EWCOP 1317, [2014] Med LR 260. 6 Ibid, para 14. 7 [2006] MHLR 306. 8 Ibid, paras 13 and 14. 9 See n5 above, para 18. 10 n5 above, para 21. 11 n5 above, para 21. 12 n5 above, para 31.

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Treating Suicidal Patients 17.44 13

n5

above, para 42; a declaration was made that the clinician’s decision was lawful and that it was lawful for those responsible for the medical care of RC to withhold all and any treatment which is transfusion into him of blood or primary blood components (red cells, white cells, plasma or platelets) notwithstanding the existence of powers under s 63 of the MHA. 14 Sensky, British Medical Journal (8 July 1995) 115–118.

17.42 Given these cases and the widening of the statutory language, past suggestions1 that the MHA cannot authorise treatment for physical disorders are now an over-simplification. While it is correct that detention under the Act is only lawful for the treatment of ‘mental disorder’, if a physical disorder or condition is the product or symptom of the mental disorder for which the patient is detained, then medical treatment for that physical disorder or condition is lawful. Thus, bandaging the cut wrists of a suicidally depressed s 3 patient without consent may be lawful by virtue of s 63. 1 Sensky, British Medical Journal (8 July 1995) 115–118.

17.43 However, what RC1 makes clear is that the treating clinician must make a separate reasonable determination that it is in fact appropriate to use s 63 for that purpose in the circumstances of the particular patient. This is illustrated by JK v A Local Health Board,2 a case regarding the lawfulness of force-feeding a man with autism spectrum disorder. He was on remand for alleged murder and transferred to psychiatric hospital under s 48 of the MHA. He then refused to eat. Lieven J, noting that ‘the interrelationship between the patient’s medical disorder and the treatment which is proposed, is in my view one primarily of medical expertise rather than legal analysis’, considered that JK’s ‘rigid belief that refusing to eat is his only way forward’ was a manifestation of his autism, a mental disorder. But while holding that the proposed force feeding was capable of being treatment for the manifestation of his mental disorder, she made clear ‘that does not mean that I by any means accept that force feeding would be in his best interests, or critically would be “treatment” that falls within the definition in s145(4) of the MHA, as being “to alleviate or prevent a worsening of the disorder”.’ To actually implement force-feeding, the Health Board would have to restore the case to court (and they were given liberty to apply to the Family Division, rather than a separate judicial review being required). In another recent case, A Healthcare v CC,3 two NHS Trusts sought clarification as to whether P, who was a detained patient, could be treated under s 63. P had a diagnosis of psychotic depression, a mixed personality disorder and deafness; he communicated via sign language. P also had type one diabetes and due to his poor compliance with diabetic treatment, suffered renal failure resulting in the need for dialysis. He was dependent on dialysis to stay alive. His capacity fluctuated. The court held that whilst dialysis would not usually be a treatment to alleviate or prevent a worsening of a mental disorder, on the facts of P’s case, the dialysis was appropriately described as treatment because the need for the dialysis stemmed from P’s self-neglect, a consequence of his mental disorder. 1 2 3

[2014] EWCOP 1317, [2014] Med LR 260. [2019] EWHC 67 (Fam). [2020] EWHC 574 (Fam).

17.44 The B v Croydon Health Authority1 decision and the amended s 63, however, do not provide the doctor with carte blanche to override a patient’s wishes. For most detained patients who suffer physical conditions requiring 653

17.44  Treating Suicidal Patients treatment, the best interests’ framework of the MCA applies. This requires an assessment of the patient’s capacity to make the decision about the treatment, and, if lacking capacity, a judgment as to where the patient’s best interests lie. For physical problems that are wholly unconnected to mental disorder (for example, a gangrenous foot, on a patient with a diagnosis of schizophrenia2), s 63 is not relevant. 1 2

[1995] 1 All ER 683 and see Chapter 13: Feeding. [1994] 1 WLR 290.

17.45 Further, while s 63 may seem to provide the doctor with an easy way out of the practical problems posed by consent and capacity issues, the reality is that for clinical and legal reasons these issues must be addressed even in relation to treatment authorised by s 63. The MHA Code of Practice1 contains as one of its guiding principles the principle of patient empowerment and involvement, as well as the principle of respect and dignity; it also mandates that a patient’s views, wishes and feelings should be considered fully and that patients should be enabled to participate in decision-making insofar as they are able. Just as for treatment under the MCA, in all cases patients should be given sufficient information to enable them to understand the nature, likely effects and risks of treatment, including the likelihood of its success and any alternatives, and there should be a compelling reason in the patient’s interest for not disclosing any relevant information. 1 See Chapter 1: Consent – General.

17.46 Thus, s 63 merely provides a last resort for the treating clinician: treatment of a detained patient’s mental disorder without the patient’s consent should be considered only once endeavours to achieve the patient’s consent have failed, and once the doctor is satisfied that proceeding with the treatment in the absence of consent is in the patient’s interests. In the case of detained patients, that question will often, but not always, be answered in the affirmative. In cases of uncertainty over whether proposed treatment falls within the scope of s 63 and s 145, the appropriate course is for an application to be made to court: A NHS Trust v A.1 1

[2013] EWHC 2422 (Fam) at para 80.

K  GUIDANCE ON APPROACH TO TREATMENT 17.47 In general,1 it remains the position that a doctor cannot force treatment on a capacitous suicidal patient who refuses that treatment. A doctor faced with such a refusal should ensure that: ●● ●● ●● ●●

the patient has capacity to make the refusal (preferably with the assistance of a psychiatric assessment); the patient has received a detailed and explicit explanation of the consequences of any failure to receive the treatment; consideration has been given as to whether the patient should be detained under the MHA 1983;2 even if a patient is making a capacitous refusal of treatment, if it is felt that they are at continuing risk of self-harm, they should be placed in as safe an environment as possible.

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Treating Suicidal Patients 17.48 If treatment is not given because of a capacitous adult’s refusal to consent, great care should be taken to record the patient’s determination. The patient should sign a record indicating that they have refused to consent. The refusal, and the information provided to the patient should, if possible, be witnessed by others. In considering each case, in addressing the ethical dilemma and weighing up the litigation risk,3 a doctor should err on the side of preserving life rather than allowing a patient to die. The court’s assistance should be sought if time permits4 in relation to suicidal adults when capacity is in question or if there is a difficult issue concerning ‘best interests’, such as the case of Kings College NHS Foundation Trust v C.5 The court’s assistance should be sought in relation to ‘suicidal’ children when: ●● ●● ●●

parent/s have refused consent to life-saving treatment; a Gillick competent child6 and their parent/s have refused consent to life-saving treatment; consideration is being given to not providing life-saving treatment following a suicide attempt, under the doctrine of ‘best interests’.

In the prison setting, it is possible that court authorisation for forced intervention which overrides consent could be permitted in exceptional circumstances on the basis of the factors outlined in the Brady case,7 namely: ●● ●● ●●

the preservation of life; the prevention of suicide; institutional discipline.

1 Exceptional circumstances may arise in the treatment of prisoners or of patients detained under the MHA 1983. 2 See discussion of Nottinghamshire Healthcare NHS Trust v RC [2014] EWCOP 1317, [2014] Med LR 260 at para 17.41 above and in particular note that even if treatment would fall within s 63 MHA, a separate judgment will have to be made by the treating clinician whether in fact it should be imposed or not. 3 Malette v Shulman [1991] 2 Med LR 162, where an Ontario court found for a Jehovah’s Witness plaintiff who claimed assault on the ground that she had been given a blood transfusion without her consent. The court awarded $20,000 damages (about $34,000 or £20,000 at today’s rates). This is a rare example of litigation founded on an assault derived from treatment against a refusal of consent which, if respected, would have resulted in the death of the patient. See Chapter 14: Religious Observance and Objections to Treatment, para 14.2. 4 It should be stressed that the Family Division of the High Court and the Court of Protection can act at very short notice; a duty judge is available 24/7, 365 days a year. 5 [2015] EWCOP 80; see para 17.12 above. See discussion of Nottinghamshire Healthcare NHS Trust v RC n2 above and para 17.41 above. 6 Or child aged 16–17. 7 R v Dr Collins and Ashworth Hospital Authority, ex p Brady [2000] Lloyd’s Med LR 355.

L CONCLUSION 17.48 The application of the law surrounding suicide demonstrates the interplay of the most basic, fundamental ethical principles and how they may well conflict. In particular, neither autonomy nor the sanctity of life is an absolute: one may gain precedence over the other, depending on the particular circumstances of the case and other competing legitimate interests. In Brady1

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17.48  Treating Suicidal Patients Kay J’s reference to institutional integrity was unusual, but important, on the specific facts of that case. The law in this field is evolving. The courts must wrestle to reconcile with the conflicts that can arise between autonomy and the sanctity of life. While this may appear a minefield for the practising healthcare professional, it should not be forgotten that acts taken to preserve life, objectively in the patient’s best interests, may be justified under the MCA, which can provide a defence to most actions.2 1 See para 17.22 above. 2 See, in particular, Savage: para 17.27 above.

For updating material and hyperlinks related to this chapter, see www. serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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Chapter 18

The End of Life

A B

C D E F G

The definition of ‘death’  18.1 The diagnosis of death  18.13 Brain stem death  18.14 Death following cessation of cardio-respiratory function  18.15 Certification and notification  18.18 The ‘process of dying’  18.19 After death  18.27 Application of ‘work and skill’ exception  18.30 Right of possession and disposal  18.36 The use and storage of human bodies and tissues  18.40 Conclusion  18.41

A  THE DEFINITION OF ‘DEATH’ 18.1 The precise definition of ‘death’ has troubled the English courts surprisingly little. Until relatively recently, the generally accepted criterion for the diagnosis of death was the permanent absence of respiration and circulation.1 With the arrival of methods of artificial ventilation and other means of resuscitation, together with the demands of organ transplant techniques, this definition has come under increasing scrutiny. 1 President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Defining Death: US President’s Commission for the study of ethical problems in medicine and biomedical and behavioral research (1981), p 3: see bit. ly/3pXvDhh.

18.2 Clearly, ascertaining whether a person is dead or alive is a matter of the utmost importance. The living, however badly disabled and however poor the prognosis, retain all the legal, human and social rights attaching to that status,1 whereas the dead have no such recognition, albeit their bodies are entitled to respect2 and – as will be seen below – have the status of a special type of property, subject to a particular set of rules.3 Thus, actions which may be lawful after death will not be lawful before it, and vice versa. Whether an act or omission caused death will depend on the determination of death, and thus this will be highly material to issues of criminal and civil liability. It is not difficult to imagine circumstances in which, through natural causes, a patient is near or at the point of death and the issue arises whether a medical or other 657

18.2  The End of Life intervention has caused or hastened death. It would then be very important to establish whether, at the moment of the intervention, the patient was already legally dead.4 1 Thus in Airedale NHS Trust v Bland [1993] AC 789, 826 it was held not only that a patient in a permanent vegetative state was alive, but that he had a right to be treated with dignity. Hoffmann LJ, in the Court of Appeal, referred to the need to respect a person’s dignity as being based on a: ‘belief that quite irrespective of what the person concerned may think about it, it is wrong for someone to be humiliated or treated without respect for his value as a person’. 2 The right to such respect is recognised by the incorporation of the ECHR into domestic law. (See, for example: breach of Art 3 and Art 8 rights of the deceased’s wife due to her emotional suffering when tissue was removed from her husband’s body without consent after his death: Elberte v Latvia (Application No 61243/08) [2015] ECtHR, 13 April 2015, [2015] Inquest Law Reports 162 and Maric v Croatia (Application No 50132/12) [2014] ECtHR 168; breach of Art 8 by disposing of the body of the applicant’s stillborn child as clinical waste leaving no trace of its whereabouts). 3 See below from para 18.27. 4 See the strange homicide case from the Supreme Court of Victoria in which medical expert testimony that the ‘twitching and jerking’ of the deceased’s body may have been ‘nerve impulses in a body which was already clinically dead’: bit.ly/2ZDUUm7.

18.3 There is no statutory definition of ‘death’ in the UK. In 2008 the Academy of Medical Royal Colleges produced a Code of Practice regarding the diagnosis and confirmation of death1 which provides a medical definition of death as: ‘the irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe.’2 The Code also notes that: ‘The irreversible cessation of brain-stem function whether induced by intra-cranial events or the result of extra-cranial phenomena, such as hypoxia, will produce this clinical state and therefore irreversible cessation of the integrative function of the brain-stem equates with the death of the individual and allows the medical practitioner to diagnose death.’ In the USA, a Uniform Determination of Death Act was proposed as a model for individual states to adopt as law in 1981 which used the following definition: ‘… either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem.’3 The essential difference between these definitions is that the Uniform Determination of Death Act requires ‘whole brain death’, rather than ‘brain stem death’, and also requires irreversible cessation of circulatory function. The Uniform Determination of Death Act, which was approved by both the American Medical Association and the American Bar Association, has now been adopted by a majority of the States, but has not been free from criticism.4 1 Academy of Royal Colleges, A code of practice for the diagnosis and confirmation of death (2008), see bit.ly/39KI3kJ. 2 See para 18.10 below. 3 Uniform Determination of Death Act (1980), National Conference of Commissioners on Uniform State Laws. 4 Capron, Brain Death – Well Settled yet Still Unresolved’ (2001) N Eng J M 344:1244–1246.

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The End of Life 18.6 18.4 In Australia, all but one of the States use the following definition: a person has died where there has occurred: ●● ●●

irreversible cessation of all function of the brain of the person; or irreversible cessation of circulation of blood in the body of the person.1

Paradoxically a statutory definition of ‘death’ does not always help determine whether a person is alive. Thus in New South Wales it has been held that a baby would be properly found to have been ‘born alive’ for the purposes of a manslaughter case by ‘any indicia of independent life’ such as ‘the evanescently persistent activity of the heart’ even in the absence of any evidence of an ability to breathe without assistance and only ‘tentative’ evidence that the presence of a heart beat and circulation indicated a functioning brain stem. There was, it was considered, no need for consistency between the statute and the common law rule.2 1

2

Human Tissue Act 1985, s 27A (Tasmania); Death (Definition) Act 1983, s 3 (South Australia); Human Tissue Act 1983 (New South Wales); Human Tissue Act 1982, s 41 (Victoria); Human Tissue Transplant Act, s 23 (Northern Territories); Transplantation and Anatomy Act 1979, s 45 (ACT); Transplantation and Anatomy Act 1979, s 45 (Queensland). R v Iby [2005] NSWCCA 178.

18.5 Generally the fact of death is proved by a death certificate or evidence from witnesses that an individual has been found to be dead, without much, if any, consideration of what that means. In 1981 the Court of Appeal rejected the argument that the withdrawal of life support from brain stem dead patients supervened to negate the causative effect of an earlier lethal injury.1 While the court expressly stated that it was not deciding what constituted death, it recognised that modern medical techniques had blurred many of the conventional and traditional concepts of death,2 and that there was then a body of medical opinion which considered that the only ‘true test of death’ was: ‘the irreversible death of the brain stem, which controls the basic functions of the body such as breathing. When that occurs it is said the body has died, even though by mechanical means the lungs are being caused to operate and some circulation of blood is taking place’.3 However, the court also said that whatever test was applied to the facts before it, there was no doubt that the victim: ‘died; that is to say, applying the traditional test, all body functions, breathing and heart beat and brain function came to an end, at the latest, soon after the ventilator was disconnected’.4 Although the court clearly recognised that the permanent cessation of all bodily functions, including respiration, circulation and brain function, constitutes death, that does not mean, and was not intended to mean, that this is the only permissible point at which death can be recognised. Thus the ‘brain stem death’ test accepts that death can occur, even though the heart is still beating. 1 2 3 4

R v Malcherek; R v Steel [1981] 1 WLR 690. Ibid, 694. Ibid, 694. Ibid, 694.

18.6 In 1992 the Family Division of the High Court in the case of Re A1 explicitly recognised the ‘brain stem death’ test as indicating death for both medical and legal purposes: it was held that a child who was brain stem dead 659

18.6  The End of Life was not capable of being subject to the court’s inherent jurisdiction over children. The court exercised its general declaratory jurisdiction to declare that the patient was dead and that it was lawful for life support to be withdrawn. In accepting the medical evidence before the court to the effect that the patient was brain stem dead, the judge appeared to accept the propriety of acting in accordance with the then current recommendation of the medical Royal Colleges.2 Implicitly, therefore, the court treated the definition of death as a matter for medical opinion rather than an absolute concept fixed by immutable legal principle. 1 2

(1992) 3 Med LR 303. Conference of Medical Royal Colleges and their Faculties in the United Kingdom, Diagnosis of Brain Stem Death (1996) BMJ 2:11, 1187.

18.7 In 1993 the Northern Ireland Family Division in Re TC1 also accepted that death ‘in the usual sense’ terminated a wardship and that medically – and in law – brain stem death was accepted as ‘death’. However, where the deceased was a ward of court, it was thought preferable for an application to be made for withdrawal of life support even though brain stem death had been confirmed. This decision has been criticised,2 but in any event should not be regarded as undermining the proposition that brain stem death, as defined by the medical profession, is sufficient to constitute legal death. 1

Re TC (A Minor) High Court (NI) Family Division, McDermott LJ, 30 November 1993, reported in [1994] 2 Med LR 376. 2 Ibid.

18.8 Also in 1993, in Airedale NHS Trust v Bland1 the House of Lords confirmed that a patient in a permanent vegetative state was not dead, and in doing so endorsed the ‘brain stem death’ test: ‘In the eyes of the medical world and of the law a person is not clinically dead so long as the brain stem retains its function … ‘Until recently, there was no doubt what was life and what was death. A man was dead if he stopped breathing and his heart stopped beating. There was no artificial means of sustaining these indications of life for more than a short while. Death in the traditional sense was beyond human control. Apart from cases of unlawful homicide, death occurred automatically in the course of nature when the natural functions of the body failed to sustain the lungs and the heart … ‘Recent developments in medical science have fundamentally affected these previous certainties. In medicine, the cessation of breathing or of heartbeat is no longer death. By the use of a ventilator, lungs which in the unaided course of nature would have stopped breathing can be made to breathe, thereby sustaining the heartbeat. Those, like Anthony Bland, who would previously have died through inability to swallow food, can be kept alive by artificial feeding. This has led the medical profession to redefine death in terms of brain stem death, ie the death of that part of the brain without which the body cannot function at all without assistance. In some cases it is now apparently possible, with the use of the ventilator, to sustain a beating heart even though the brain stem, and therefore in medical terms the patient, is dead: the “ventilated corpse” … ‘I do not refer to these factors because Anthony Bland is already dead, either medically or legally. His brain stem is alive and so is he; provided that he 660

The End of Life 18.10 is artificially fed and the waste products evacuated from his body by skilled medical care, his body sustains its own life.’ 1

Airedale NHS Trust v Bland [1993] AC 789, 856, 878. See Chapter 15: Withdrawal and Withholding of Treatment.

18.9 The revised Code of Practice published in 2008 by the Academy of the Medical Royal Colleges not only defined death as ‘the irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe’, but also confirmed that this clinical state would be produced by the irreversible cessation of brain stem function. Accordingly, loss of brain stem function would equate with the death of the individual.1 The Code provided guidance as to how the irreversible loss of brain stem function and therefore death could be diagnosed and confirmed by reference to medical criteria. It also emphasised the need to separate entirely the diagnosis of death from anything to do with organ donation and transplantation.2 When death is diagnosed following formal confirmation of brain stem death by agreed medical criteria, intensive technological support is no longer appropriate and should be withdrawn, unless organ donation is being considered. However, death is still often diagnosed by means other than the full ‘brain stem death’ test as recommended by the Royal Colleges. In many cases death will be obvious from the state in which a body is found, or from the time which has elapsed since the cessation of breathing and cardiac circulation. In such cases formalised brain stem testing by two doctors is unnecessary to establish death; indeed, recognition of life extinct (known as ‘ROLE’) is often declared by paramedics as part of the decision-making to withhold cardiopulmonary resuscitation.3 However, this does not mean that there are two or more legal definitions of death; merely that there is more than one way of diagnosing it. Thus cessation of cardiac function for a sufficiently prolonged period to be considered irreversible may itself be sufficient evidence of brain stem death. 1

Academy of Medical Royal Colleges, A Code of Practice for the Diagnosis and Confirmation of Death (October 2008): see bit.ly/3jRPevF. 2 Ibid, p 9. 3 See the Joint Royal Colleges Ambulance Liaison committee guidelines: see www.jrcalc.org. uk/guidelines/.

18.10 The 2008 Code of Practice confirmed that the criteria for assessing brain stem death in adults was applicable to children older than two months, but noted that between 37 weeks of gestation and two months of age, it is rarely possible confidently to diagnose death as a result of cessation of brainstem reflexes. The absence of guidance that relates to babies under the age of two months was rectified by the publication of guidance by the UK Royal College of Paediatrics and Child Health in 2015.1 This stated that the method of diagnosis of brain stem death endorsed in the 2008 Code ‘can be confidently used in infants from 37 weeks corrected gestation (post menstrual) to two months post term.’ However, as a result of the immaturity of the newborn infant’s respiratory system it recommended that a stronger hyper-carbic stimulus should be used than that required under the 2008 Code when performing the apnoea test in order to establish respiratory unresponsiveness. 1

Royal College of Paediatrics and Child Health, The diagnosis of death by neurological criteria in infants less than two months old (April 2015), see bit.ly/2L6dBaj.

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18.11  The End of Life 18.11 The fact that brain stem death equates with legal death was confirmed in Re A.1 Following a hypoxic event a 19-month-old boy had been declared clinically dead. However, he remained ventilated and so his circulation was being maintained. The family wished to take Child A, still ventilated, to Saudi Arabia where, for religious reasons, the ventilator would not be switched off. When the local coroner sought to intervene in the matter by asking the NHS Trust to cease ventilation so the body could be moved to a mortuary the High Court was invited to resolve the matter under its inherent jurisdiction. Hayden J stated: ‘The facts of this case are a reminder once again that in a multi-cultural society there has to be recognition that people, particularly those with strong religious beliefs, may differ with medical professionals as to when death occurs. In the Christian, Muslim and Jewish faiths the concept of the “breath of life” has ancient and important resonance. It is hardly difficult to understand why the still breathing body is regarded as alive, even though “breath” may be entirely delivered by machine. An insistence on a legally precise definition of death to trigger the involvement of the coroner, in such challenging circumstances is, in my judgment, so obviously wrong as to be redundant of any contrary argument.’2 However, the judge noted that the doctors had declared Child A’s clinical death on the basis of brain stem testing two days previously at 10.10 hours, which was subsequently confirmed by further brain stem testing at 17.30 hours that same day. Having considered the Royal Medical Colleges’ Code of Practice and adopting the dicta in Bland above,3 Hayden J declared that ‘the child had been dead at the earlier of these brain stem testings at 10.10 hours’4 and that ‘the court was now making declarations in respect of what must now be regarded as Child A’s body.’5 The declaration sought – that it was lawful to discontinue ventilation – was made; the judge additionally observing that in future: ‘Should a difference of view arise between treating clinicians and family members in circumstances where assisted ventilation is continuing, any dispute, if it cannot be resolved otherwise, should be determined in the High Court, not under coronial powers.’6 1 Re A (a child) [2015] EWHC 443 (Fam), [2015] Inquest Law Reports 11. 2 Ibid, para 24. 3 See para 18.8 above. 4 n1 above, para 15. 5 Ibid, para 25. 6 Ibid, para 27.

18.12 The decision in Re A was approved by the Court of Appeal in Re M1 in which Sir Andrew McFarlane P stated as follows: ‘… as a matter of law, it is the case that brain stem death is established as the legal criteria in the United Kingdom by the House of Lord’s decision in Bland. It is not, therefore, open to this court to contemplate a different test.’ The court went even further by noting that it would be: ‘… in reality, impossible for this court now to embark upon an assessment of whether a different test, namely that adopted in the USA, should replace the long established UK criteria represented, in modern times, by the 2008 Code and the 2015 Guidance’.2 662

The End of Life 18.14 Accordingly, the settled position is that the legal definition of ‘death’ is ‘brain stem death’, and it is unlikely to be changed by anything less than revised guidance being issued by a body such as the Academy of the Medical Royal Colleges. 1 2

Re M (Declaration of Death of a Child) [2020] EWCA Civ 164, [2020] 4 WLR 52, [2020] Med LR 165 at para 91. Ibid, para 92.

B  THE DIAGNOSIS OF DEATH 18.13 Clearly, the confirmation that a patient has died, as judged by the brain stem death criteria, is a more complex matter than the recognition of death by the traditional criteria of the apparently irreversible absence of circulation and respiration. Given the demands for recoverable organs for transplant and the resulting need for organ recovery to take place as soon as possible after the cessation of artificially maintained circulation, the means of diagnosing and confirming death have come under continued scrutiny. The point at which death occurs after both breathing and the heart stop has come under particularly detailed consideration. This is because of the need for certainty as to the earliest time at which it would be acceptable to start the process of removing organs for transplantation. As set out above, the Academy of the Medical Royal Colleges in its Code of Practice has sought to define death and simplify its diagnosis while keeping separate the issues of organ donation and transplantation.1 The Code divides the criteria for diagnosing death into two categories: death following the irreversible cessation of brain stem function and death following cessation of cardio-respiratory function. Each of these requires separate consideration.2 1 2

Above at para 18.9. For infants under two months old the more specific RCPCH 2015 Guidance, The diagnosis of death by neurological criteria in infants less than 2 months old should be considered; see bit. ly/2L6dBaj.

Brain stem death 18.14 The Code emphasises that the irreversible loss of consciousness by itself does not equate with death of the individual: thus, patients in a vegetative state are alive.1 The difference is that such patients are capable of breathing without assistance, whereas those with an irreversible loss of brain stem function are not. Further, loss of brain stem function does not equate with the loss of all neurological activity, such as reflexes which are independent of the brain. What is permanently lost is any form of consciousness associated with human life, and in particular the ability to feel, be aware or do anything. Where such residual activity exists, it will not do so for long because of the rapid breakdown of other bodily functions.2 The Code sets out detailed recommendations for the process of diagnosing brain stem death.3 These include certain strict criteria as to the circumstances of testing including that:4 ●●

Diagnosis is to be made by two doctors who have been registered for more than five years and are competent in the procedure, and at least one of whom should be a consultant. 663

18.14  The End of Life ●●

Those carrying out the tests must not have, or be perceived to have, any clinical conflict of interest, and neither doctor should be a member of the transplant team. Testing should be undertaken by the doctors together and must always be performed completely, and successfully, on two occasions in total. The complete set of tests should be performed on each occasion.

●● ●●

The Code notes that although death is not confirmed until the second test has been completed, upon confirmation following the second test, the legal time of death is when the first test indicates death due to the absence of brain-stem reflexes.5 1 See para 18.2, n1 above. 2 Code, p 11. 3 Ibid, pp 13–20. 4 Ibid, p 19. 5 Ibid, p 19.

Death following cessation of cardio-respiratory function 18.15

The Code proposes that:

‘For people suffering cardiorespiratory arrest (including failed resuscitation), death can be diagnosed when a registered medical practitioner, or other appropriately trained and qualified individual, confirms the irreversible cessation of neurological (pupillary), cardiac and respiratory activity. Diagnosing death in this situation requires confirmation that there has been irreversible damage to the vital centres of the brain-stem, due to the length of time in which the circulation to the brain has been absent.’1 It is observed that there are no standardised criteria for the confirmation of death after cessation of cardio-respiratory function. 1

Code, p 11.

18.16 While the Code should be read in full for the detail,1 in summary it recommends that the point at which death occurs is identified by the following conditions:2 ●● ●● ●●

●● ●● ●●

The simultaneous and irreversible onset of apnoea and unconsciousness in the absence of circulation. Full and extensive attempts at reversal of any contributing cause of the arrest have been made. Either the patient meets the criteria for not attempting cardiopulmonary resuscitation, or attempts at this have failed, or life-sustaining treatment has been withdrawn as not being in the patient’s best interests, or pursuant to a valid advance decision to refuse treatment. The patient should be observed for a minimum of five minutes to establish that irreversible cardio-respiratory arrest has occurred, usually by confirming the absence of a central pulse and/or heart sounds. Any spontaneous return of cardiac or respiratory activity within the period of observation should be followed by a further five minutes’ observation from the next point of cardio-respiratory arrest. After five minutes of such arrest the absence of pupillary responses to light, of the corneal reflexes and of any motor response to supra-orbital pressure should be confirmed. 664

The End of Life 18.17 ●● 1 2

The time of death will be recorded as the time at which these criteria are fulfilled. See bit.ly/39KI3kJ. Code, p 12.

18.17 While this Code was produced by a highly distinguished working party, it has not arrived at a definition of death and a means of confirming death following cardiorespiratory arrest that will always be acceptable as a matter of law. We would highlight the following problems: ●●

●●

●●

There is a lack of clarity with regard to the neurological state required for death to have occurred. The recommended definition and means of diagnosing brain stem death derive from widely accepted criteria which have, as noted above, been commonly accepted by the courts as indicating legal death. The methods recommended for diagnosing death following cardio-respiratory arrest run the risk of giving rise to a second definition, as opposed to a second means of diagnosis. While neurological tests are recommended, they are not as detailed as those required to confirm brain stem death. The suggested tests may be sufficient to demonstrate brain stem death in a patient who is not being artificially ventilated, following a five-minute cessation of circulation, but the paper does not say so. Judgments about the desirability of resuscitation should not be part of the process of determining whether death has occurred. While the Code’s overall definition of death includes the criterion of irreversible loss of consciousness and of the capacity to breathe, the diagnostic tests include reference to an intent (on the part of a doctor, or others) not to permit resuscitation. We suggest that irreversibility in this context ought to refer to a physical state which is physiologically irreversible by any means, not merely irreversible because noone intends to make the attempt. If, for whatever reason, a doctor intervened successfully to resuscitate a patient whose heart had stopped for more than five minutes, it could not be claimed that the patient had been dead before then, merely because until that moment no-one had intended or wanted to resuscitate and the required neurological tests had been carried out. These concerns are not entirely academic. In the US it has been reported that successful heart transplantation has been performed using hearts from two babies, whose life support had been withdrawn, and who were declared dead after cardiorespiratory function had stopped for 1¼ minutes.1 It has been argued that the successful restarting of the heart in such circumstances shows that there had not been an irreversible cessation of function and that life was ended by organ removal.2 It is not suggested that a similar procedure would be permitted under the AMRC’s Code, but it may be that further consideration is required as to whether the requirement for irreversibility is adequately addressed or explained in the guidance. There should be no need to discourage attempts at restoring cerebral perfusion after confirmation of death if the diagnostic process truly establishes that cessation of cardio-respiratory and brain function is irreversible. The inclusion of this requirement is likely to make the lay reader at least wonder whether the diagnostic recommendations are as robust as they need to be in order to give assurance that death has truly taken place. 665

18.17  The End of Life The desire of the authors of the Code to separate the definition of death from the process of organ donation must be applauded. Nevertheless, the insertion of doctors’ subjective intentions about the desirability of further resuscitation into that definition creates troublesome uncertainty. While quantum physicists may be content that Schrödinger’s cat was both dead and alive, when applied to humans this will not be an approach which will find favour with society or the courts. 1 Boucek et al, Pediatric Heart Transplantation after Declaration of Cardiocirculatory Death (2008) NEngl J Med 359:7; 709. 2 Veatch, Donating Hearts after Cardiac Death – Reversing the Irreversible (2008) NEngl JMed 359: 672; available at: bit.ly/2a2Zn5F.

Certification and notification 18.18 The Shipman Inquiry observed in 2003 that there was no legal requirement that the fact of death need be certified.1 It recommended that such certification by a health professional be required in order, in part, to assist in the professional scrutiny of the circumstances of the death and to protect against the falsification of relevant facts. Dame Janet Smith was also critical of the system for the medical certification of the cause of death, which was required before any death can be registered. Detailed recommendations were made for reform of the certification and coronial systems. The Coroners and Justice Act 2009 included provisions for the appointment of medical examiners, a role intended to provide independent scrutiny of the certification of the cause of death.2 These provisions will also require local authorities in England to establish a medical examiner service. All deaths not subject to a coroner’s investigation will need to be scrutinised by a medical examiner, and the cause of death stated by the attending doctor confirmed before a death is registered and/or before a funeral can take place. These provisions, which were welcomed by subsequent reviews such as the Francis Inquiry3 are still not yet in force. However, the 2009 Act did provide for the appointment of a National Medical Examiner for England and Wales (who has been in place since March 2019), whose role is to provide professional and strategic leadership to regional and trust-based medical examiners. There has also been the roll-out of a non-statutory scheme of medical examiners covering deaths in NHS hospitals. Once this non-statutory scheme covers all hospitals it is anticipated that the government will then move towards placing the scheme on a statutory footing, and that the statutory scheme may then be extended to also cover deaths within the community. There were previously also no regulations governing the circumstances of reporting of deaths by medical practitioners to coroners. This changed with the Notification of Deaths Regulations 2019 (SI 2019/1112) which came into force on 1 October 2019. These Regulations require that a registered medical practitioner must notify the relevant senior coroner of a person’s death if they come to know of the death in certain types of cases (such as where the practitioner suspects that death was due to the use of a drug, injury, self-harm or neglect). When making such a notification, the medical practitioner must provide certain information (if known to the practitioner) including which 666

The End of Life 18.19 of the relevant circumstances (such as the use of a drug, injury, self-harm or neglect) apply to the death, and the place, date and time of death. 1 Shipman Inquiry: Third Report – The Certification of Death and the Investigation of Deaths by Coroners (Cmnd 5854, July 2003), see bit.ly/3qrMJSm. 2 At ss 18–21. Please note some temporary changes were put in place in relation to certification of death during the coronavirus pandemic in the Coronavirus Act 2020: see UK government guidance at https://bit.ly/3pXvcUb and see, for example, MDU Advice at https://bit. ly/3muMx4C. 3 Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry 2013: bit.ly/29QU31z.

The ‘process of dying’ 18.19 Although, as we have seen, the process by which a diagnosis of death is reached has seen some flux, death remains commonly understood as a biological event, the timing of which can be determined. On the other hand, the concept of dying, that is the transition from life to death, is more difficult to grasp. A dying person, including a person very close to death, remains alive and therefore the object of legal protections, including the fundamental entitlement to be treated with dignity. If the dying person is capable of making and expressing decisions about their own death then respect for their autonomy requires that doctors provide life-prolonging treatment only if it is expressly accepted.1 If the patient is unable to take an active part in decision-making, a decision needs to be made, usually by doctors in consultation with those close to the patient and, more rarely, by the courts, on when and how to end treatment. Similarly, such decisions must accord with the right to human dignity at the end of life. As with any other patient with capacity, a dying person with capacity has a right to be involved in decisions that will potentially deprive them of lifesustaining treatment. In R (Tracey) v Cambridge University Hospitals NHS Foundation Trust2 the Court of Appeal confirmed that it was a breach of Art 8 of the ECHR to fail to involve a patient, who had terminal lung cancer, with a decision to place a Do Not Attempt Cardio-Pulmonary Resuscitation (‘DNACPR’) notice on her medical file. This decision is particularly significant as studies have suggested that as recently as 2010 less than half of all DNACPR forms are documented as having been discussed with the patient or their relatives.3 Although it is not a requirement of Art 8 to involve a patient if there is a convincing reason not to do so (such as when it is likely to cause physical or psychological harm) the mere fact that the patient would find the discussion distressing is not a good reason to not involve them. It has subsequently been confirmed that the same principle applies to patients without capacity and there is therefore a duty on clinicians to consult any individual identified by s 4(7) of the MCA in relation to decisions to withhold life sustaining treatment, unless it is not practicable and appropriate to do so.4 1 See Chapter 1: Consent – General and Chapter 15: Withdrawal and Withholding of Treatment for further discussion. 2 [2015] QB 543. 3 Fritz et al, The Universal Form of Treatment Options (UFTO) as an Alternative to Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) Orders: A Mixed Methods Evaluation of the Effects on Clinical Practice and Patient Care PLoS One 2013; 8(9) e70977. 4 Winspear v City Hospitals Sunderland NHS Foundation Trust [2016] QB 691.

667

18.20  The End of Life 18.20 End-of-life issues, such as assisted suicide,1 are frequently a matter of debate, and increasing attention is being paid to the ‘process of dying’, including the provision of good-quality palliative care. In 2006/07 the first ‘National Audit of the Care of the Dying in Hospitals in England’ was carried out.2 The most recent audit took place in August 2015.3 The audit reflected upon the issues identified by the Neuberger Review of the Liverpool Care Pathway4 and after considering what improvements could be made in relation to the quality of hospital care for the dying and their families, a number of practical recommendations were made. In July 2008 the Department of Health published an ‘End of Life Care Strategy’, described as the first comprehensive framework aimed at promoting high-quality care across the country for all adults approaching the end of life. This was reviewed on an annual basis, with the last and final report being published in October 2012.5 By formalising the advance decision, the Mental Capacity Act 2005 can be seen to have extended the ways in which people can plan for a time when they are dying but may not have capacity to make decisions as to their treatment, particularly refusal of life-sustaining treatment. Airedale NHS Trust v Bland6 provides a clear acknowledgement that when life-prolonging treatment is refused by a capacitous patient, and this refusal leads to that patient’s death, this is not classified as suicide.7 On 26 June 2014 a new approach to care for the dying was launched,8 which succeeded the Liverpool Care Pathway as the new basis for caring for someone at the end of their life. It provides for five new Priorities for Care and advocates enabling an individual to plan for death well before end of life: ●●

●● ●● ●● ●●

The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly. Sensitive communication takes place between staff and the person who is dying and those important to them. The dying person, and those identified as important to them, are involved in decisions about treatment and care. The people important to the dying person are listened to and their needs are respected. Care is tailored to the individual and delivered with compassion – with an individual care plan in place. This priority includes the fact that a person must be supported to eat and drink as long as they wish to do so, and their comfort and dignity prioritised.

When the approach was launched, the Care and Support Minister Norman Lamb stated: ‘The new priorities will mean that care is focused on dying people’s wishes – rather than processes. This will make sure that their voices, and those of their families, are heard at all times … It’s also important that, where possible, planning for dying should start well before the last few days and hours of someone’s life, where they want to have those discussion.’9 1 See Chapter 17: Treating Suicidal Patients, paras 17.6–17.23 above. 2 See bit.ly/2KYzTKW. 3 Results can be found at rcplondon.ac.uk see bit.ly/29QVi0G.

668

The End of Life 18.22 4 See bit.ly/29VRuNv. 5 See bit.ly/2VyIIxc. 6 [1993] AC 789. 7 See Chapter 17: Treating Suicidal Patients, para 17.7 above. 8 See www.gov.uk, 26 June 2014 press release at bit.ly/29W5OtC; www.england.nhs.uk/eolc/; and see Leadership Alliance for the Care of Dying People – Engagement at bit.ly/3bsaJP6. 9 Ibid.

18.21 It is only in limited cases that the law becomes involved in the ‘process of dying’, for example where capacity is an issue, the patient is unable to indicate their intentions or there is no valid advance decision, or where there is a dispute between clinicians and family regarding end of life care. While the courts have stressed that there is a strong presumption in favour of a course of action which will prolong life (due to the principle of the sanctity of life) this presumption is not irrebuttable.1 Whether it is in the patient’s best interests to continue life sustaining treatment is often highly fact sensitive and requires consideration of every factor capable of impacting on that decision (including medical, emotional, sensory and instinctive factors).2 More recently the courts have also emphasised the importance of the principle of self-determination and the need to consider the issue from the assumed point of view of the patient and in particular to try to ascertain what the patient’s attitude to continued treatment is likely to have been.3 In these cases the language of dignity – both dignity in life and dignity in death – has also featured heavily in the judgments. However, whereas some judges have considered the concept of dignity to be helpful,4 others have refused to adopt ‘some supposedly objective concept of dignity’.5 As was noted by the Court of Appeal in Parfitt v Guy’s and St Thomas’ Children’s NHS Foundation Trust, it may be necessary in the future for it to address the role played by the concept of dignity in decisions of this sort.6 1 2 3 4 5 6

Wyatt v (1) Portsmouth Hospital NHS Trust (2) Charlotte Wyatt (by her Guardian CAFCASS) [2005] 1 WLR 3995. See Chapter 3: Deciding for Others – Adults, paras 3.19 above. See, for example, An NHS Trust v MB [2006] 2 FLR 319, where a detailed list of benefits and burdens was drawn up by the guardian ad litem and adopted by the court. See Chapter 4: Deciding for Others – Children, para 4.21 above. Raqeeb v Barts NHS Foundation Trust [2020] 3 All ER 663. See Chapter 15: Withdrawal and Withholding of Treatment, paras 15.76–15.80 above. For example, Raqeeb v Barts NHS Foundation Trust (n3) at para 176. Guy’s and St Thomas’ Children’s NHS Foundation Trust v Knight [2021] EWCA 25 (Fam) at para 86. [2021] EWCA Civ 362 at para 101.

18.22 In Re C (A Minor) (Wardship: Medical Treatment), a young child, C, had a severe condition leading to brain damage. C had undergone palliative surgery but this was unable to restore brain function.1 The court accepted that C was dying and the only question was how soon this would happen, since there was no medical treatment capable of altering that prognosis. Because of the high standard of care being given to C, the medical expert was unable to forecast how long she would live. The expert’s view was that the goal should be to ease the child’s suffering, rather than to achieve a short prolongation of life. Therefore, treatment such as administering antibiotics in the event of infection or setting up a feeding regime, actions which would prolong a life that had no future, were considered by the expert as wrong. The expert’s advice was followed by the court, with the practical result that C could be treated by the hospital to allow her life to come to an end peacefully and with dignity. 669

18.22  The End of Life A similar conclusion was reached on the facts in An NHS Trust v MB.2 The child in this case suffered from degenerative and progressive spinal muscular atrophy. He required ventilation and could not swallow. Although he also suffered from epileptic fits, he was aware and conscious. The experts agreed that the child’s prognosis was very poor and that death, even with continuation of the extant treatment, was inevitable. With such treatment the child may have survived for a small number of years or could die suddenly and soon. Applying the ‘best interests’ test, it was decided that ventilation should continue. However, the experts went on to identify a number of procedures that went beyond maintaining ventilation and required the positive infliction of pain. In the court’s view in the event that these procedures were needed MB had moved naturally towards death and it would be in the child’s best interest to withhold those procedures even though he would probably die. Holman J stated: ‘… I do not enter the question of whether he is already “in the dying process” as stated by one [of the treating doctors]. Precisely because doctors and modern science have the capacity to prolong life or delay death, there may be medical, ethical and philosophical questions about when “the dying process” begins. But I do know that currently, between one day and the next he [MB] is not dying and does not die; although he may die suddenly on any day.’3 1 2 3

[1990] 1 FLR 252. [2006] 2 FLR 319. Ibid, para 95.

18.23 In another case involving a seriously ill child,1 the ‘dying process’ merged, in practical terms, into the provision of palliative care which itself has been described by the courts as: ‘the treatment of distress where there is a low possibility of cure and the provision of comfort and improved quality of life so far as possible. The aim is not to prolong life but to provide the child and their family with support and care anticipating the child’s death.’2 In this case a declaration was granted to the treating Hospital Trust in the following terms: ‘K should continue to receive full non-life prolonging palliative care, offering relief of any distress with analgesic and anxiolytic medication and should be allowed to die in comfort and dignity.’ So, while it seems courts may be reluctant to acknowledge in express terms that a patient has embarked on the ‘dying process’, in cases where the courts do become involved, the reality is that declarations such as that above may be viewed as a tacit acceptance of it. However, there is clearly a real difference between recognising the inevitability of the dying process and the attendant concern with maintaining human dignity at the end of a life and a course of action aimed at accelerating death. Taylor LJ said in Re J (A Minor): ‘There is no question of approving, even in the case of the most horrendous disability, a course aimed at terminating life or accelerating death. The court is concerned only with the circumstances in which steps should not be taken to prolong life.’3 1 2

Re K (a Child) (2006) 2 FLR 883, (2008) 99 BMLR 98. Ibid, para 21.

670

The End of Life 18.25 3

[1991] Fam 33, [1991] 1 FLR 366, [1991] 2 WLR 140, [1990] 3 All ER 930, CA at para 155. Cited and approved in A National Health Service Trust v D and Others [2000] 2 FLR 677. See Chapter 4: Deciding for Others – Children, para 4.16 above. Thus in re RB (a Child) [2009] EWHC B26 (Fam) the court did not intervene when a father who had previously opposed withdrawal of ventilation from a seriously ill (but not brain damaged) baby agreed to such withdrawal after consideration of the medical evidence to the effect that the child’s future life would be full of pain and distress. See also Re C (Baby: Withdrawal of Medical Treatment) [2015] EWHC 2920 (Fam), paras 30–31, where Peter Jackson J declared treatment could be withheld from an eight-month-old baby, stating that: ‘the benefits to C of continued treatment consist only in the prolongation of her life by intensive medical intervention. The burdens, which only she has to bear, are considerable. She has no quality of life beyond remission from pain and distress. Even if she survives, she has no future to look forward to. She can experience none of the joys of life, but at best a continuous series of medical interventions. The likely consequence of this decision is that C will soon die. Given her sad experience of life, I hope that she will have a peaceful death.’ See Chapter 4: Deciding for Others – Children, paras 4.34 and 4.37 above.

18.24 The above cases reflect the court’s role in overseeing the ‘process of dying’ at stages where death is not immediately imminent. The complexities of this kind of situation were further considered, both at first instance and in the Court of Appeal in Burke1 in the context of addressing the lawfulness of guidance contained in the GMC publication Withholding and Withdrawal of Life-Prolonging Treatment – Good Practice in Decision-Making (2002) (the ‘2002 Guidance’).2 The appellant in Burke was concerned about the effect of para 81 of the 2002 Guidance which provided: ‘Where death is not imminent, it usually will be appropriate to provide artificial nutrition or hydration. However, circumstances may arise where you [the doctor] judge that a patient’s condition is so severe, the prognosis so poor, that providing artificial nutrition or hydration may cause suffering or be too burdensome in relation to the possible benefits.’ Expert evidence was given to the court that the provision of artificial nutrition could actually increase a patient’s suffering to the extent that, having weighed the benefits and burdens of providing artificial nutrition, as well as considering the patient’s wishes, it would be appropriate to withhold or withdraw such lifeprolonging treatment even though this would lead to death and a case in which death was not otherwise imminent.3 1

2 3

R (on the application of Burke) v GMC and Disability Rights Commission [2005] QB 424, Munby J, and [2006] QB 273, CA, [2005] 3 WLR 1132, [2005] 2 FLR 1223. The applicant sought clarification of the circumstances in which artificial nutrition and hydration could lawfully be withdrawn and contended that the 2002 Guidance was unlawful. He did not want artificial nutrition and hydration to be withdrawn and was concerned that a decision to do so would be taken by clinicians on the basis that his life was not ‘worth living’. Now replaced (see para 18.25 below). N1, paras 18–20 at first instance and para 54 in the Court of Appeal.

18.25 The GMC Guidance was updated in 2010.1 The new guidance addresses the factual situation encountered in Burke. It provides the following recommendation for situations in which a patient requested a particular treatment while he still had capacity, but has subsequently lost capacity: ‘If a patient has lost capacity to decide, you must provide any treatment you assess to be of overall benefit to the patient. When assessing overall benefit, you should take into account the patient’s previous request, what you know about their other wishes and preferences, and the goals of care at that stage (for example, whether the focus has changed to palliative care), and you should consult the patient’s legal proxy or those close to the patient, as set 671

18.25  The End of Life out in the decision-making model in paragraph 16. The patient’s previous request must be given weight and, when the benefits, burdens and risks are finely balanced, will usually be the deciding factor.’2 1 GMC, Treatment and care towards the end of life: good practice in decision making (May 2010): bit.ly/2H6obas. 2 Ibid, para 65. For guidance on how to resolve disagreements, doctors are referred to paras 77–78 of GMC’s Consent: patients and doctors making decisions together (2008).

18.26 For medical practitioners the end stages of the ‘dying process’ raise further difficult legal and moral issues. For example, cases may arise where a patient with a severe traumatic brain injury is to become a non-heart beating organ donor after a withdrawal of care decision.1 Leaving aside the difficult issues of obtaining appropriate consent for donation, optimal organ viability is clearly desirable in such cases. The dying process requires careful management – immediate access to a surgical retrieval team needs to be organised and protective measures such as the administration of heparin and antibiotics may be needed. Since such measures may not be understood as in the patient’s best interests, as they have no therapeutic effect, there is potential for conflict. Similarly, in cases where a decision is made to withdraw life-supporting care, any subsequent prolonging of such care to gain extra time to organise a retrieval team raises delicate issues for practitioners.2 1

Form of donation in circumstances where the deceased donor was not ventilated at the time of death. Donation therefore occurs once death is certified following cardio-respiratory arrest. 2 For more detailed consideration of organ donation, see Chapter 19: Human Organ and Tissue Donation below.

C  AFTER DEATH 18.27 The legal status of a corpse was first considered in the late seventeenth and early eighteenth centuries in the context of grave robbing.1 In more recent times, as a result of the Royal Liverpool Children’s Inquiry2 and the Bristol Royal Infirmary Inquiry,3 there has been public scrutiny of the legal status of cadavers and of post-mortem practices. 1 For a more detailed history, see R Hardcastle, Law and the Human Body, Property Rights, Ownership and Control (2007). 2 See bit.ly/3mQrx6t. 3 See bit.ly/2adUmJo.

18.28 The general principle in English law is that there is no property in a body.1 The question of whether or not a corpse or part of a corpse could be property was considered by the English courts in R v Kelly.2 In this case anatomical specimens which had been dissected, fixed or preserved at the Royal College of Surgeons had been taken by the defendant. The issue for the Court of Appeal was whether the offence of theft could be made out, given that the Theft Act 1968 requires appropriation of property. It was accepted that: ‘however questionable the historical origins of the principles, it has now been the common law for 150 years at least that neither a corpse, nor parts of a corpse, are in themselves and without more capable of being property protected by rights.’3 1

This was reaffirmed in Burrows v HM Coroner for Preston [2008] 2 FLR 1225. The Supreme Court of California has also held, in Moore v Regents University of California (1990) 793 P 2d 479, that the plaintiff had no property rights to cells taken from his body and used in medical

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The End of Life 18.31

2 3

research. However, it was also stated by the court that ‘we do not purport to hold that excised cells can never be property for any purposes whatsoever’ (at 493). [1998] 3 All ER 741, referring to R v Sharp (1857) Dears & Bell 160. The historical background was considered in Yearworth v North Bristol NHS Trust [2009] EWCA Civ 37 at para 31. [1998] 3 All ER 741 at 749 per Rose LJ.

18.29 There was no attempt to alter this principle in the Human Tissue Act 2004. However, there are two key qualifications at common law to the ‘no property’ in a corpse rule, these being (1) the application of a ‘work and skill’ exception;1 and (2) the right of possession of a body for disposal.2 These will be considered in turn. 1 The US courts have recognised property rights to dead bodies and materials removed from dead bodies without relying on a ‘work and skill’ exception. 2 It should also be noted that if it is necessary for a coroner to take possession of a body for the purposes of their enquiries, they have an absolute right at common law to possession of this body until the inquest is completed, see R v Bristol Coroner, ex p Kerr [1974] QB 652.

D  APPLICATION OF ‘WORK AND SKILL’ EXCEPTION 18.30 This caveat to the ‘no property’ principle was forged in a decision of the High Court of Australia in Doodeward v Spence.1 The police had confiscated and refused to return the corpse of a pair of still-born conjoined twins which had been preserved and displayed by the plaintiff. Griffith CJ said: ‘So far as it constitutes property, a human body, or a portion of a human body, is capable by law of becoming the subject of property … When a person has by the lawful exercise of work or skill dealt with a human body in his lawful possession so that it has acquired some attributes differentiating it from a mere corpse awaiting burial, he acquires a right to retain possession of it, at least against any person not entitled to have it delivered to him for the purposes of burial.’2 1 2

(1908) 6 CLR 406 Aust HC; see also Williams v Williams [1882] 20 Ch D 659. (1908) 6 CLR 406, 414.

18.31 Barton J was prepared to agree that an action did lie in relation to a stillborn foetus but did not wish to cast doubt on the general rule that an unburied corpse was not the subject of property. Higgins J dissented on the basis that no-one could have property in another human being, whether living or dead. Although Griffith CJ went furthest in his judgment, the limits of this apparent exception were not fully explored because he considered it unnecessary to give an exhaustive enumeration of the circumstances under which a right to possess a human body or body parts may be acquired. Whatever the source and extent of this exception, it has been recognised and followed by the English courts. In Dobson v North Tyneside Health Authority1 Peter Gibson LJ considered Doodeward and asked whether, on the facts before him, the ‘work’ done on the body part (a brain removed during a post-mortem and preserved in paraffin) was sufficient to transform it into an item that could be the subject of possessory rights. It was found that there was nothing to suggest that the preservation of a brain after post-mortem was: ‘on a par with stuffing or embalming a corpse or preserving an anatomical or pathological specimen for a scientific collection or with preserving a human freak such as a double headed foetus that had some value for exhibition purposes.’2 673

18.31  The End of Life This does nothing to clarify the extent of the ‘work’ required to be done before the ‘work and skill’ exception will apply. One commentator has noted that preservation of the foetus was deemed sufficient in Doodeward while in Dobson fixing (akin to preservation) was not and has gone on to suggest that the different treatment lies in an intention to create a novel item with a use of its own.3 1 [1997] 1 WLR 596, [1996] 4 All ER 474. For further consideration of this case, see (1997) Med LR 110. 2 [1997] 1 WLR 596, 601. 3 See the commentary at (1998) 6 Med LR 247.

18.32 In spite of the uncertain boundaries, this approach to body parts from a corpse was accepted in R v Kelly1 and Lord Justice Rose, giving judgment for the Court of Appeal, raised the possibility of further development of this exception: ‘Furthermore the common law does not stand still. It may be that if, on some future occasion, the question arises, the Courts will hold that human body parts are capable of being property for the purposes of section 4 [of the Theft Act 1968], even without the acquisition of different attributes, if they have a use of significance beyond their mere existence. This may be so if, for example, they are intended for use in an organ transplant operation, for the extraction of DNA or, for that matter, as an exhibit in a trial.’2 Two points of distinction between Doodeward and Kelly should be noted. First, Doodeward seemed to be concerned with the right to possession rather than ownership, whereas Kelly asked whether the human specimens could be property. Secondly, the specimens in Kelly had originated in living persons while the corpse in Doodeward was that of a still-born foetus and thus had never actually been alive.3 As discussed in Chapter 9: Abortion, in English law a foetus does not have any independent legal rights or legal status.4 Nevertheless Doodeward is taken as authority for the proposition that there is no property in a dead body (unless it falls into the ‘work and skill’ exception). It is suggested that there is some conceptual legal difficulty with reconciling this proposition with the facts of Doodeward, given that the foetus never achieved the status of a living, and therefore dead, human being in the first place.5 Further examination of this ‘work and skill’ exception6 was undertaken in Yearworth v North Bristol NHS Trust,7 with the court expressing dissatisfaction with the existing formulation. The appellant cancer patients had had sperm samples banked at a fertility unit of a hospital run by the defendant Trust, on the basis that forthcoming chemotherapy might cause infertility. These samples were damaged when the storage equipment failed. Claims were brought for damages for psychiatric injury or mental distress caused by learning of the loss of the sperm samples. Clearly the court was dealing here with products from a living human body but it was acknowledged that the easiest course would nevertheless have been to apply the Doodeward exception; storing the sperm in liquid nitrogen was an application to the sperm of work and skill which conferred on it a substantially different attribute.8 However, this was not the line of reasoning adopted: ‘we are not content to see the common law in this area founded upon the principle in Doodeward, which was devised as an exception to a principle, itself of exceptional character, relating to the ownership of a human corpse. Such ancestry does not commend it as a solid foundation. Moreover a 674

The End of Life 18.35 distinction between the capacity to own body parts or products which have, and which have not, been subject to the exercise of work or skill is not entirely logical.’9 1 [1998] 3 All ER 741. 2 At 750. It appears that Lord Justice Rose did not consider that Dobson would be included within the scope of this obiter comment even though the brain in that case had been required for forensic examination within the context of a medical negligence action. 3 As pointed out in The Inquiry into the Management of Care of Children Receiving Complex Heart Surgery at The Bristol Royal Infirmary (Interim Report, Removal and Retention of Material), Annex B, Part III, para 124 (July 2001): see bit.ly/2adUmJo. 4 See further, in the context of abortion, Paton v British Pregnancy Advisory Trustees [1979] 1 QB 276; C v S [1987] 1 All ER 1230. See Chapter 9: Abortion, para 9.20 above. 5 It could be seen that Barton J’s judgment was limited to a still-born child and not a onceliving child. However, such an analysis fails to deal with the problem that such a foetus is not considered a human being in English law. 6 Considered and approved again by Gage J in In Re Organ Retention Group Litigation [2005] QB 506: see, for example, paras 160 and 257. 7 [2009] 3 WLR 118; LS Law Medical 126. 8 Ibid, para 45(c). 9 Ibid, para 45(d).

18.33 In reaching the conclusion that the men had ownership of the sperm for the purposes of their claim, the court emphasised a number of factors, including the sole object of the ejaculation of the sperm being that it might be used later for their benefit, and that the men had retained the right to require destruction of the sperm at any time. It was considered that the latter represented a fundamental feature of ownership. 18.34 The authorities in this area are therefore somewhat in flux – on one hand the Court of Appeal (Criminal Division) in R v Kelly seemed to build on Doodeward in opening the way for ownership of future body parts beyond the confines of the ‘work and skill’ exception. In a slightly different manner, the Court of Appeal (Civil Division) appears to have sought to discard the formulation of this exception entirely, even if the decision did not relate to cadaveric body parts. It is reasonable to assume that future consideration of these kinds of cases will provide fertile ground for arguments of ownership not restricted to the ‘work and skill’ exception. 18.35 Yearworth may also be seen as complicating the following enquiry: if corpses and body parts can be property, then in whom does that property vest? The claims in Re Organ Retention Group Litigation1 were brought by parents of deceased children on whom post-mortems had been performed in order to establish the cause of death (these were not coroner directed post-mortems). In respect of one of the claims, Gage J stated that the parents: ‘did not, at any stage, obtain the right to possess the organs retained from [the deceased child]. In my opinion, following the post-mortem, the hospital acquired proprietary and possessory rights to the organs. Once the pathologists had by their work and skill removed the organs and prepared blocks and slides for histological examination those organs and the blocks and slides came within the Doodeward exception …’2 Thus the suggestion is that whatever property rights do come into being as a result of work being done on the body parts, these vest in the person carrying out this work. However, on this analysis possessory rights to the sperm in Yearworth would have vested in the clinicians or technicians and not the men themselves. The answer may lie in identifying the intentions of the persons 675

18.35  The End of Life from whom the tissue is taken, if alive, but those of the persons applying work and skill, to a dead body or tissue from it. 1 2

[2005] QB 506. Ibid, para 257.

E  RIGHT OF POSSESSION AND DISPOSAL 18.36 Individuals may have a right to possess a corpse for the purposes of burial. It is arguable that for most purposes this is more appropriately viewed as correlative of the obligation to dispose of a deceased person’s body. In Williams v Williams1 it was acknowledged that the duty of disposal leads to a right to possession of a corpse until its lawful disposition.2 However, this does not extend to a right to have organs that have lawfully been removed from a body, whether for post-mortem or other purposes, returned prior to the disposition.3 1 (1882) 20 Ch D 659. 2 See also Dobson v North Tyneside Health Authority [1997] 1 WLR 596, [1996] 4 All ER 474 per Peter Gibson at 600, who affirmed the general principle that persons charged by law with interring the body have a right to the custody and possession of it until it is properly buried. 3 In re Organ Retention Group Litigation [2005] QB 506.

18.37 At common law the right of possession of a body for the purposes of burial falls to the deceased’s personal representative or the executor of their will. This is in preference to the surviving spouse or next-of-kin (unless they fulfil one of these roles).1 In cases where no personal representative or executor has been appointed, the person with the best right to the grant of administration takes precedence. This situation was considered in Burrows v HM Coroner for Preston,2 in which the court was required to determine who had the right to make funeral arrangements for the deceased teenager. The deceased had lived with his uncle for a number of years because his natural mother was a heroin addict. The deceased’s mother wanted him to be buried while his uncle preferred cremation in accordance with the deceased’s expressed wish. The court’s approach to this dispute was as follows: ●● ●● ●● ●●

●● ●●

There is no property in a body but various people have rights and duties in relation to its disposal. The deceased’s personal representative, executor of the will and administrator of the estate have a right to determine the mode and place of disposal. The personal representative’s claim to the body will usually oust other claims.3 Where a personal representative is not appointed, the person with the best right to the grant of administration takes precedence. Where there are two or more persons ranking equally then the dispute must be decided on a practical basis. The domestic law, in r 22 of the Non-Contentious Probate Rules 1987, is clear about how to decide precedence.4 However, if there is a dispute about who should have the right to possession of the body for the purposes of disposal, s 116 of the Senior Courts Act 1981 enables the court to appoint some other person as administrator and so displace the normal rules of priority. The exercise of such a power would be very rare.5 676

The End of Life 18.38 ●●

In such situations two questions should be asked. First, whether there are any special circumstances which may displace the order of priority in r 22, and secondly, whether it is necessary and expedient, by reason of those special circumstances, to displace the normal order of priority.

In deciding whether the deceased’s uncle should be appointed as administrator (thus displacing the normal rules) the court took into account, as special circumstances, the deceased’s clear wish to be cremated and went on to state that in as much as domestic law said that the views of the deceased could be ignored, this was no longer good law.6 The court also considered the right to privacy and family life under Art 8 of the ECHR. In Lakey v Medway Foundation Trust7 the claimant was refusing to bury the body of his wife, which had been kept in the defendant’s hospital mortuary for over four years. The court held that whilst there was no right of ownership in a dead body, there was a common law duty to arrange for its disposal, which embodied a right to retain the body until burial or cremation. That duty primarily fell to the personal representative of the deceased. However, that right also carried with it a duty to ensure disposal within a reasonable period. Where, as in this case, the personal representative had not carried out his duty then those with the body in their lawful custody had the power to make the proper arrangements instead. Hence a declaration permitting the defendant NHS Trust to bury or cremate the body was made. 1

R v Gwynedd County Council, ex p B [1992] 3 All ER 317, [1991] 2 FLR 365, which has been cited as authority for the proposition that the right to arrange disposal of remains of a child vests exclusively in the parents. 2 [2008] 2 FLR 1225, [2008] Inquest Law Reports 72. 3 The court stated that in some cases statute might entitle the coroner or possibly a hospital or local authority to make claims on the body. 4 Application of these Rules in this case would have given priority to the deceased’s natural mother. 5 Citing Buchanan v Milton [1999] 2 FLR 844 Fam Div. 6 Applying X v Germany (8741/79) (unreported, March 10, 1981, Eur Comm HR) and Dodsbo v Sweden (2007) 45 EHRR 22, ECHR. In Hartstone v Gardner [2008] 2 FLR 1681 the deceased’s own wishes as to the place of his burial and the reasonable wishes and requirements of his family and friends were considered. 7 [2009] EWHC 3574 (QB) [2009], Inquest Law Reports 267.

18.38 Section 46 of the Public Health (Control of Disease) Act 1984 provides that it is the duty of a local authority to arrange for the burial or cremation of the body of any person where it appears that no suitable arrangements for disposal have been or are being made. This section was considered in Re Ian Stewart-Brady (Deceased)1 in relation to the disposal of the body of the notorious Moors murderer. Ian Brady had appointed his solicitor as his executor but they had failed to arrange for the disposal of his remains five months after his death. Orders were therefore sought by local authorities whereby they be permitted to arrange for disposal under s 46, or they be appointed as administrators pursuant to s 116 of the Senior Courts Act 1981 for the purpose of arranging the disposal. Alternatively, the court was asked to exercise its inherent jurisdiction to give directions as to the disposal of the remains. The court concluded that the local authority’s duty under s 46 was not engaged as, although the local authority was not aware of the details of any arrangements made by the executor for disposal of the body, it understood that the executor intended to make such arrangements. 677

18.38  The End of Life In relation to s 116, the court accepted that an administration order could be made for the limited purpose of disposing of the body if special circumstances made it necessary or expedient to do so. In that case, the special circumstances included the fact that the victims’ families might be legitimately offended by an insensitive disposal, and the public interest in ensuring that disposal did not create unrest or disorder. The court specifically acknowledged that public policy required that any body should be disposed of decently and lawfully with due dispatch.2 The court also confirmed that it had power under s 116 and also pursuant to its inherent jurisdiction to give detailed directions as to the disposal of the remains.3 On the unusual facts of the case it was determined that although the deceased’s wishes were relevant, they did not outweigh the need to avoid justified public indignation and actual unrest and that accordingly the court could and should direct precisely how the body should be disposed of and even whether music could be played during the cremation.4 This latter direction was required due to a concern that a particular symphony would be played which tells of a killer haunted by his victim in the afterlife (which would obviously have been distressing and offensive to the victims’ families). 1 2 3 4

[2018] Ch 543, [2018] 3 WLR 337. Ibid, para 74. Ibid, para 80. Ibid, para 84.

18.39 The right to possession has been expanded to include a coroner’s right to possession of a body when this is part of their enquiries in this role.1 Further, in some situations it may be that the occupier of the premises where the deceased died, has a right to dispose of the body.2 1 R v Bristol Coroner, ex p Kerr [1974] QB 652. 2 See, for example, University Hospital Lewisham NHS Trust v Hamuth [2006] EWHC 1609 (Ch), [2006] Inquest LR 141, in which the NHS Trust was granted a declaration that it was lawfully in possession of the deceased’s body and could make arrangements to dispose of it in a lawful manner. This was against the background of a dispute over the validity of the deceased’s will, the prompt resolution of which was unlikely.

F  THE USE AND STORAGE OF HUMAN BODIES AND TISSUES 18.40 The Human Tissue Act 2004 is now the governing legislation for issues relating to whole-body donation and the taking, storage and use of human organs and tissues.1 This legislation, discussed in greater detail in Chapter 19: Human Organ and Tissue Donation, covers the removal of material from the bodies of deceased persons as well as from living persons. Consent from an appropriate person is the touchstone to this Act and such consent is required for the storage and use of whole bodies and the removal, storage and use of relevant material from the body of a deceased person.2 ‘Relevant material’ is defined in s 53 as any material consisting of, or including, human cells, with the exception of gametes, embryos outside the body and hair and nails from a living person. 1 The Act repeals and replaces the Human Tissue Act 1961, the Anatomy Act 1984 and the Human Organ Transplant Act 1989 as they relate to England and Wales and the corresponding legislation in Northern Ireland. 2 Consent is also required for the storage and use of relevant material from a living person.

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The End of Life 18.41

G CONCLUSION 18.41 It might be thought that a concept as fundamental as death should be capable of clear and easily comprehensible definition. Unfortunately, advances in medical knowledge and techniques mean this is not so. The need for such a precise definition is obvious: death marks the point at which all the rights and obligations which attach to a living human being cease. The task of achieving a practical definition is complicated by the conflict between the medical recognition of death as a process and the law’s need to identify a point in time when death occurs. The status of a dead body is now also the subject of increasing attention. When the only conceivable legitimate interest in possession of a body was in arranging for decent disposal – following, if necessary, some form of forensic investigation – it was understandable that the rights and obligations of interested parties could be loosely defined. However the increase in the benefits that can be obtained from organs and tissues of the dead, and the increased demand for recognition of a wide variety of religious and other beliefs, have led to the need for a more detailed definition of the rights and obligations associated with dead bodies. Thus the law remains to be developed further.

For updating material and hyperlinks related to this chapter, see www. serjeantsinn.com/news-and-resources/medical-treatment-decisions/

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Chapter 19

Human Organ and Tissue Donation

A B C

D

Introduction 19.1 The common law  19.2 The Human Tissue Act 2004  19.3 Donations by living persons  19.8 Types of living organ donation  19.9 Activities authorised by the Act  19.11 Consent 19.12 The Act  19.12 Appropriate consent and the Codes  19.13 Incapacitous adults  19.14 Children 19.15 Best interests  19.16 Approval by the Human Tissue Authority  19.17 Types of donation by living donors  19.18 Consent – children  19.19 Consent – adults  19.20 Preservation of organs after death  19.21 Preparatory steps taken before death  19.22 Conclusion 19.23

A INTRODUCTION 19.1 The ability to transplant organs and other tissue to patients has dramatically transformed the life expectancy and quality of life of many patients. An increasing range of procedures has now become possible, from heart transplants to ‘face’ transplants. The success of such procedures brings with it an ever-increasing demand for organs and tissue and, inevitably, a shortage. At the time of writing, more than 5,000 people are currently waiting for a transplant in the UK.1 Understandably, this has led to continual challenges to the legal and ethical boundaries of what is permissible. Animal organs and tissue may in some circumstances be used and in principle such procedures may be considered as similar to more routine forms of medical treatment and raise the same issues of consent and propriety. Accordingly, no separate consideration is given to those issues in this chapter. Organs and tissues

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19.1  Human Organ and Tissue Donation obtained from human beings, whether living or dead, raise special issues which are considered here. These issues principally concern the means by which organs and tissue are obtained. They cross the boundaries of life and death. Thus the use of organs taken from a dead person may be governed by decisions made by that person before their death. Questions may arise as to what may or should be done to prepare a donor’s organs for donation in anticipation of death. After death, the use of organs may be governed by the decisions of those appointed by the deceased to deal with the issue of consent, and disputes may occur as to the storage and use of organs or tissue. Above all, there is a need for as much legal clarity as possible so that doctors, other medical staff, potential donors and their families can feel confident in the process. Failing this, there is a danger that the supply of tissues and organs will diminish rather than increase. This chapter looks specifically at the legal requirements for organ donation and transplantation in England.2 The principal legislation, the Human Tissue Act 2004, also governs the donation and use of human tissue for other purposes, such as research and anatomical display, but these are beyond the scope of this book. Necessarily this chapter focuses on the process of organ donation, as the transplant of organs and tissue into a recipient is covered by the general legal principles governing consent to medical treatment dealt with elsewhere in this book. 1 NHS Blood and Transplant website: see bit.ly/NHS-Organ-Donation. 2 There is separate legislation in Scotland: the Human Tissue (Scotland) Act 2006. From 1 December 2015 Wales moved to an assumed consent system for organ donation after death whereby consent has been assumed in relation to adults, save those who are excepted (those not ordinarily resident in Wales, or who for a significant period before dying lacked capacity, see Human Transplantation (Wales) Act 2013, ss 4 and 5). As addressed below, England adopted a ‘deemed consent’ approach from 20 May 2020 (by the Organ Donation (Deemed Consent) Act 2019 passed on 15 March 2019). Scotland similarly moved to an ‘opt out’ system from 26 March 2021 (upon the Human Tissue (Authorisation) (Scotland) Act 2019 being passed in July 2019). The Human Tissue Authority’s remit does not extend to Scotland, and therefore the Codes of Practice referred to in this section do not apply to establishments in Scotland (and see Code of Practice A ‘Guiding Principles and the Fundamental Principle of Consent’, Annex A, para 9).

B  THE COMMON LAW 19.2 The common law offers no rule or principle dealing with human tissue transplants as such. Complications are caused in this area by the common law concept that invasive medical treatment, however beneficial, is regarded as an assault unless legitimated by consent.1 Thus it is not entirely clear that at common law the consent of a capacitous adult to the removal for the benefit of another of one of two healthy kidneys, or even regenerative tissue, the removal of which will leave a scar, would provide a defence to the surgeon undertaking the procedure: it is at least open to question whether it would be for the benefit of the donor, however willing. Even more difficult questions arise at common law with regard to whether lawful consent to such a procedure on a child or other person lacking the capacity to consent can be provided by a parent or other person authorised to consent to medical procedures. There are further problems arising with regard

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Human Organ and Tissue Donation 19.3 to the use of organs and tissue from a dead body. The common law provides few practical answers. Fortunately, Parliament has intervened and this area is now largely, but not entirely, governed by statute, comprehensive Codes of Practice and the Human Tissue Authority (‘the Authority’).2 1 See Chapter 1: Consent – General above for the general principles and requirements for consent in medical treatment; and see, for example, observations of Australian Law Reform Commission, Human Tissue Transplants, Report No 7 (1977), pp 22–25. 2 Human Tissue Act 2004. See the discussion of the Codes of Practice at para 19.3 below. The importance of having a clear legislative framework in which donation takes place is demonstrated by Elberte v Latvia (2015) 61 EHRR 7, [2015] Inquest Law Reports 162, in which Art 8 was found to have been violated because Latvian law was not formulated with sufficient precision and did not afford adequate legal protection against arbitrariness.

C  THE HUMAN TISSUE ACT 2004 19.3 It is now unlawful for ‘transplantable material’, as defined in the Act, to be removed from the body of a living person with the intention that it be used for transplantation, or used for that purpose, knowing that the person from whom the material is, or has been, removed is alive, or where it might reasonably be expected that the person removing the material had that knowledge, unless the requirements of the Act are complied with. The offence so created is not a particularly serious one: it is a summary offence in respect of which the maximum sentence is 51 weeks’ imprisonment or a fine. The Human Tissue Authority (hereafter ‘the Authority’) has issued nine Codes of Practice.1 The first edition, issued in 2006, had six Codes; these were revised to reflect the experience of the Authority. Revised Codes came into force on 15 September 2009, and were further updated in July 2014. The Codes were revised again in May 2020. The principal Codes referred to in this chapter are Code of Practice A – Guiding principles and the fundamental principle of consent, and Code of Practice F – Donation of solid organs and tissue for transplantation (part one being ‘Living organ donation’ and part two ‘Deceased organ and tissue donation’). In this chapter these will be referred to as ‘Code A on Consent’ and ‘Code F on Donation’ respectively. The revised May 2020 Codes (updated April 2021) followed the Authority’s fundamental review of the Codes. The Codes were restructured so that relevant sector information is contained within the respective Code (underpinned by Code A on Consent, which all sectors must follow). The Codes are accompanied by ‘Public guides to the HTA Codes of Practice’ which set out the basic rights of an individual when dealing with an establishment regulated by the Act and how tissue is regulated. Each Code is informed by four Guiding Principles on which the work of the Authority is said to be founded and which should inform the actions of anyone undertaking activities to which the Act applies.2 In summary, these are: ●● ●● ●●

Consent: including that the wishes of the donor or their relatives should have primacy. Dignity: to be paramount in the treatment of human tissue and bodies. Quality: to underpin the management of human tissue and bodies.

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19.3  Human Organ and Tissue Donation ●●

Honesty and openness: to be the foundation of communications in matters pertaining to the use of human tissue and bodies.

As these principles are said to derive ‘explicitly or implicitly’ from the Act, it is suggested that they should be used as an aid in construing the relevant statutory obligations. The principal changes in the new Code A on Consent are as follows: ●● ●● ●●

There is a greater emphasis on the legal concept of consent. This aspect has its own section now (see paras 17–22 in particular), which was previously not the case. The elements of ‘valid’ consent have been reworded (see paras 40–44). The new Code states that for consent to be valid the person must be told what the material risks are.3 It removes sections in the previous Code on Consent which suggested that even if an adult has given valid consent, the impact on family members who oppose the use of the body or tissue may militate against doing so (see Code A on Consent, paras 30–39).

There are also several innovations in both parts of the New Code F on Donation that are worthy of note: ●●

●● ●●

Whilst the New Code is consistent with the previous Code in stating that the court’s approval is required for the removal of an organ from an adult who lacks capacity, the New Code identifies four alternative routes for a decision as to whether the removal of other material should take place:4 –– an advance decision by the donor to refuse consent, which cannot be overridden; –– a valid Lasting Power of Attorney made at a time when the donor had capacity, giving someone else the power to make this type of decision; –– a decision by a person given the specific power to make such a decision in an appointment as a Welfare Deputy by the Court of Protection; –– a best interests decision made by a judge of the Court of Protection. The New Code now specifies what information donors must be given to enable them to consent (para 67 part 1). The New Code contains a new section: ‘The NHS Organ Donor Register as a source of consent’ (see paras 108–119 part 2).5

1 See the Authority’s website www.hta.gov.uk; a 10th Code has been published, taking effect from 1 December 2015 to provide guidance on the Human Transplantation (Wales) Act 2013, the effect of which is not covered by this chapter. 2 See Code A on Consent, para 8. 3 The test of materiality is that set out in Montgomery v Lanarkshire Health Board [2015] UKSC 11; see Chapter 1: Consent – General, paras 1.21 to 1.23. 4 Para 55 part 1. 5 For detail on the previous code see previous editions of this book.

19.4 ‘Transplantable material’ for the purposes of s 33 of the Act 2004 (restrictions on transplants involving a live donor) is defined1 for this purpose as material removed from the body of a living person with the intention of it being transplanted into another person, where that material is: ●●

an organ or part of an organ if it is to be used for the same purpose as the entire organ in a human body, unless removed from the body 684

Human Organ and Tissue Donation 19.8

●●

1

of a living person for the primary purpose of the medical treatment of that person, for instance if an organ were removed for the purpose of surgery; bone marrow and peripheral blood stem cells, but only when removed from the body of an adult lacking capacity to consent or a child who is not Gillick competent to do so. Human Tissue Act 2004 (Persons who Lack Capacity to Consent and Transplants) Regulations 2006 (SI 2006/1659), reg 10. Regulation 9 defines ‘transplantable material’ for the purposes of s 34 of the Act – Information about transplant operations – as the whole or part of the kidney, heart, lung or a lung lobe, pancreas, liver, bowel, larynx if it is to be used for the same purpose as the entire organ in the human body; or as ‘face’ or ‘limb’.

19.5 A criminal offence is committed if, without appropriate consent, a person removes relevant material from a deceased person, or uses or stores such tissue for one of the purposes specified in the Act, unless they reasonably believe that they do the activity with such consent or that what they do is not an activity to which the relevant subsection applies.1 There are also various common law offences which make any activity in this regard not authorised under the Act legally perilous.2 1 Human Tissue Act 2004, s 5(1), referring to s 1(1), (2) and (3), the purposes referred to are listed in Sch 1 to the Act. 2 For example, it is an indictable offence to dispose of a dead body for the purpose of dissection without lawful authority: R v Lynn (1788) 1 Leach 497; R v Cundick (1822) Dowl & Ry NP 13.

19.6 Leaving aside criminal offences, the following, among other, activities are lawful if done with ‘appropriate consent’1 and for the purpose of transplantation:2 ●● ●● ●●

the storage and use of a body of a deceased person; the removal, for storage, from the body of a deceased person of relevant material; the storage and use of any relevant material which has come from a human body (by which must be meant the body of a living person).

1 See para 19.12 below. 2 Human Tissue Act 2004, s 1.

19.7 The provisions relating to donations from living persons and those occurring after death are considered separately below. It is important to note that the deemed consent system for organ and tissue donation after death now operational in England and Wales does not have any impact on the Authority’s regulation of living organ donation.1 1

Code A on Consent Annex A, para 8.

Donations by living persons 19.8 It is a criminal offence to remove material knowingly from a living person for the purpose of transplantation or to use such material knowing it has come from a living person, unless permitted under the Act.1 By regulation,2 certain activities are permitted, subject to strict conditions. 1 Human Tissue Act 2004, s 33. 2 Human Tissue Act 2004, s 33; Human Tissue Act 2004 (Persons who Lack Capacity to Consent and Transplants) Regulations 2006 (SI 2006/1659), Pt 3, reg 11.

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19.9  Human Organ and Tissue Donation

Types of living organ donation 19.9 ●● ●● ●● ●●

●●

1

There are five types of living organ donation:1 directed donation, whereby a person (usually living) donates an organ or part of one to a specific identified recipient with whom they have a genetic or pre-existing emotional relationship; directed altruistic donation, whereby the donation is being directed to a specified individual and there is no evidence of a qualifying genetic or pre-existing emotional relationship; non-directed altruistic donation, whereby the organ is donated by a healthy person who has no relationship with the recipient and is unaware of who the recipient will be; paired and pooled donation, where a living person is unable (or chooses not) to donate because they are incompatible with their intended recipient or prefer a better match and are matched with another donor and recipient in the same situation in the National Living Donor Kidney Sharing Schemes; non-directed altruistic donor chains, whereby a non-directed altruistic donor donates their organ in a paired or pooled scheme allowing a chain of operations to be performed.

Code F on Donation, Pt 1, para 28.

19.10 A further category of living donation is what the Authority calls ‘domino donation’. Organs (but not bone marrow or blood stem cells) which have been removed for the primary purpose of treating the persons from whom they have been removed may prove suitable for transplant into another person. Such transplants are not regulated by the Authority, and the donation itself is not subject to the requirements of the Act, although the consent of the living patient donating the organ would be required in accordance with the common law. However, the consent required for use of the organ for transplantation is subject to the requirements of the Act. The Authority describes such procedures as ‘non-directed domino organ donation’, but approval of the Authority is not required.1 As in at least some circumstances2 a patient will retain proprietary rights over organs and tissue removed from their body it is suggested that the obtaining of their consent is not only good practice but potentially an essential legal requirement. 1 2

Code F on Donation Pt 1, paras 28, 32, 34 and glossary p 32. Yearworth v North Bristol NHS Trust [2009] EWCA Civ 37.

Activities authorised by the Act 19.11 The activities rendered lawful by the Act, but controlled under it, are the removal of material from the body of a living person with the intention that it be transplanted into the body of another person where the material consists of: ●● ●●

an organ, or parts of an organ, if to be used for the same purpose as the entire organ in the human body, except where the primary purpose of removal is the treatment of the person from whom the material is taken; in the case only of adults who lack capacity or children who are not Gillick competent, only bone marrow and peripheral blood stem cells, taken from such persons,1 provided ‘appropriate consent’ 686

Human Organ and Tissue Donation 19.12 has been obtained,2 and the requirements of the regulations are complied with.3 Commercial dealings in organs for transplant and trafficking are criminal offences prohibited by the Act. However, the prohibition does not extend to activities licensed by the Authority or to the reimbursement of expenses, such as travel costs and loss of earnings, which are reasonably attributable to and directly result from donation. The donor may not materially benefit in any way.4 1 2 3 4

SI 2006/1659, reg 10. Section 1(1)(d) and (f), Sch 1, para 7. SI 2006/1659, Pt 3. Human Tissue Act 2004, s 32; Code F on Donation, Pt 1, paras 40–43.

Consent The Act 19.12 The Act provides that storage or use of any ‘relevant material which has come from a human body’ for the purpose of transplantation or transfusion to a living person may be lawful, but requires, among other things, ‘appropriate consent’. Different definitions for ‘appropriate consent’ are given for adults and children.1 In the case of a living adult, this means their consent. If the adult lacks the capacity to consent and an advance decision by them is not in force, consent may be deemed to exist if circumstances as defined in regulations exist. Where the purpose of the proposed activity is for obtaining information relevant to another person or transplantation, such consent may be deemed to exist if the activity is carried out by a person who is acting in what they reasonably believe to be the best interests of the person concerned.2 Deemed consent modifies the appropriate consent provisions for organs and tissue donation for donation after death. Where the adult person concerned has died and the activity in question is neither public display nor anatomical examination, four alternative situations are defined:3 ●●

●●

If, immediately before the death, a decision by ‘the person concerned’ to consent – or not to consent – to that activity was ‘in force’, that ‘consent’ applies. The language is potentially confusing: if the decision in force before death is not to consent, i.e. an advance refusal, presumably there is no consent and therefore the requirement for appropriate consent cannot be met. If there is no decision in force as described above at the time of death, ie the person concerned has expressed no valid decision on the proposed activity, but they have appointed a person or persons under the Act to deal with the issue of consent after death, the consent required is the consent of that person or persons. An appointment for this purpose may be general or limited to consent in relation to a specified activity, and may be oral or in writing. If oral, it must be in the presence of at least two witnesses present at the same time. If in writing, the appointment must be signed – or directed to be signed – in the presence of at least one witness who attests the signature. An appointment can 687

19.12  Human Organ and Tissue Donation

●●

●●

also be made in a valid will. If more than one person is appointed they may act jointly or severally unless the contrary is specified. Such appointments can be revoked at any time in the same way as they can be made, and an appointee may renounce the appointment. Appointees must be adults. It would appear that it is possible to appoint a child for this purpose, who becomes empowered to act on attaining adulthood. Appointees who are ‘prescribed under regulations’ may not act, but no such regulations are in force at the time of writing. If neither of the above situations applies, consent is ‘deemed’ where the activity in question is the storage of the body of a deceased person for the purpose of transplantation, the removal from the deceased person for transplantation of any permitted material, or the storage for use or use for the purpose of transplantation of any permitted material. The person concerned is to be deemed to have consented to the activity unless a person who stood in a qualifying relationship to the person concerned immediately before death provides information that would lead a reasonable person to conclude that the person concerned would not have consented. If neither of the first two situations exist and the activity is not one to which deemed consent applies, then consent may be given by a person in a ‘qualifying relationship’ with the person concerned immediately before death.

Deemed consent applies to all in England and Wales unless they do not want to be a donor or are in an excluded group. The excluded groups are people who lack mental capacity for a significant period before their death, people not ordinarily resident in England or Wales for at least 12 months immediately before their death, or children under 18.4 In the case of living children, they may give or refuse appropriate consent. It is clear that such consent can only be given if the child is Gillick competent to give it in accordance with the normal principles governing consent by children.5 Where there is no valid consent or refusal by the child, appropriate consent may be given by a person with parental responsibility. Where the child has died and the proposed activity is other than public display or anatomical examination, a competent decision to consent or refuse to consent before their death is determinative in the same way as would be the case with an adult.6 If the child has made no competent decision while alive, appropriate consent may be given by a person who had parental responsibility immediately before the death, or, if no one had such responsibility, by a person in a ‘qualifying relationship’. References to a ‘qualifying relationship’ above are to a spouse, civil partner, parent, child, brother, sister, grandparent, grandchild, child of a brother or sister, stepfather, stepmother, half-brother, half-sister and friend of long standing.7 The application of these provisions in practice is considered further below. 1 2 3

Human Tissue Act 2004, ss 2 and 3; Code A on Consent, para 30–39, 90 Glossary p 42. Human Tissue Act 2004 (Persons who Lack Capacity to Consent and Transplants) Regulations 2006 (SI 2006/1659), reg 3. Different provisions apply to Scotland and N Ireland. See reg 5 for use of DNA without consent. Human Tissue Act 2004, ss 3 and 4.

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Human Organ and Tissue Donation 19.14 4 Code A on Consent Glossary, p 43. 5 See Chapter 4: Deciding for others: Children. 6 Code A on Consent, paras 87–94. 7 Human Tissue Act 2004, s 54(9); Code A on Consent, para 32–39.

Appropriate consent and the Codes 19.13 The Human Tissue Authority’s Code F on Donation Pt 1 advises that consent from an adult is ‘valid’ if the person concerned:1 ●● ●● ●●

has the capacity to give it; does so voluntarily; and is appropriately informed about the activity in question.2

Code A on Consent advises that obtaining valid consent presupposes that there is a process in which individuals, including partners, relatives and friends, may discuss the issues in full, ask questions and make an informed choice.3 Consent may differ in its duration and may be enduring or timelimited. Enduring consent remains in force unless withdrawn.4 Consent may be withdrawn at any time. For obvious reasons withdrawal of consent cannot be acted upon where tissue has already been used. It is suggested that failure to undertake a process of consultation after consent has been given does not necessarily invalidate the consent and specific questions will depend on the fundamental principles of consent considered in Chapter 1: Consent – General. 1 Code A on Consent, para 40. 2 The information that should be explained to the donor is set out in detail in Code F on Donation Pt 1, paras 63–71. 3 Code A on Consent, para 44. 4 Ibid, paras 49–52.

Incapacitous adults 19.14 Where an adult lacks the capacity to consent to transplantation involving material from their body, consent is deemed to exist where the activity is done by a person acting in what they reasonably believe to be the adult’s best interests.1 However, this provision has to be read alongside the requirement that an organ donation is one of the categories of case in which the decision is considered to be so serious that the matter has to be referred to the Court of Protection for it to be made.2 Therefore in reality it is inevitably a matter for the court to decide whether a proposed donation is in the best interests of the adult, and it is unlikely that any practitioner will be found to have held a reasonable belief that an individual’s best interests were served by organ donation without knowledge of a court order to that effect.3 1

Human Tissue Act 2004 (Persons who Lack Capacity to Consent and Transplant) Regulations 2006 (SI 2006/1659), reg 3(1) and (2)(a). 2 Code A on Consent, paras 114–127; see also Mental Capacity Act Code of Practice (DCA 2007), para 6.18. 3 Code F on Donation, part 1, paras 47–50 and 55–59 which emphasises the importance of a court declaration that removal would be lawful and that donation may only proceed once approved by an Authority panel (as to which, see para 19.17 below).

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19.15  Human Organ and Tissue Donation

Children 19.15 A ‘child’ is defined for the purpose of the Human Tissue Act 2004 as a person under the age of 18.1 A child may have the capacity to consent at common law, in accordance with the principles recognised in Gillick.2 The consent required for a proposed organ donation can be given by a child who is Gillick competent.3 However, Code F on Donation Pt 1 states that children can only be considered as living donors in extremely rare circumstances.4 Even where the child is competent it is good practice to consult the person with parental responsibility and to involve them in the child’s decision-making process.5 In any event court approval should be obtained, given the potentially serious consequences for the child.6 The person with parental responsibility may consent to a proposed donation by a child, but only if:7 ●● ●● ●●

there is not in force any decision by the child to consent – or not to consent – to the proposed donation; and the child is not competent to do so; or the child, although competent, neither consents nor refuses.

The Act does not make it clear whether a decision of an incompetent child is capable of being ‘in force’ for this purpose. It is strongly arguable that a decision cannot be ‘in force’ unless it is competently made. In any event it is suggested that the circumstances in which the court or the Authority would ever impose the removal of an organ on an unwilling child must be very rare indeed. Even where the person with parental responsibility is in a position to consent, any proposal for organ donation is non-therapeutic so far as the child is concerned and accordingly it is not lawful for a parent to consent to it unless satisfied that it is in the child’s best interests to be a donor. As it will be very difficult for a parent to be objective about such an emotive issue, particularly where close family members are likely to be involved, some form of independent scrutiny will almost invariably be expected. Code A on Consent states that where there is any dispute or any doubt as to the child’s best interests, court approval should be sought.8 In our view court referral should be almost invariable, given the potentially serious consequences of organ donation for a child. Different considerations may apply to more minor donation of tissue. Code G, the Code on ‘Donation of allogenic bone marrow and peripheral blood stem cells for transplantation’ was published in April 2017 and sets out the requirements for court approval for children without competence and states that court approval is not required as a matter of course but that the court should be asked to rule in advance where (a) there is a dispute between those with parental responsibility, or between them and the clinicians looking after the child, or (b) a doubt as to best interests. That Code goes on to advise that a court ruling should be in place before the case is referred to the Authority for a decision on approval for the donation to proceed.9 1 Section 54(1). 2 See Chapter 4: Deciding for Others – Children. 3 Section 2(2). See also Code A on Consent, paras 87–94. 4 Code F on Donation Pt 1, para 44.

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Human Organ and Tissue Donation 19.16 5 Code A on Consent, para 133. The current Code A on Consent also provides in respect of tissue from the deceased that in any case where a child has consented to the use of their body or tissue, it is essential to discuss this with the child’s relatives (para 91). 6 Code F on Donation, Pt 1, paras 44–46. 7 Section 2(3); Code A on Consent, para 129. 8 Code A on Consent, para 132. See also Brief guide: capacity and competence in under 18s, CQC Oct 2015, www.cqc.org.uk. 9 Code G, paras 48–49. Code A on Consent (para 132) directs the reader to Code G for further guidance on court approval in cases of potential donation.

Best interests 19.16 As demonstrated above, where a potential donor is incapable of giving a valid consent, whether as a child or as an incapacitated adult, it is necessary to consider whether the procedure is in that person’s best interests. While the factual considerations may well differ between adults and children, in these circumstances it is suggested that identical principles apply to both. Usually a medical procedure is performed on an adult or child incapable of giving consent only if it is intended that they derive some therapeutic benefit from it. Clearly, organ donation offers no such benefit to the donor and is associated with significant risks. Therefore it is unlikely that donation is ever in the best medical interests of a potential donor. However, that is not the only factor to be taken into account in deciding a person’s best interests. It is well established that ‘best interests’ encompasses more than medical best interests and includes emotional, psychological and social and all other welfare issues.1 Religious views may also be relevant. Where a procedure of benefit to a third party is being considered, the only test of best interests is whether the procedure is of sufficient benefit to the potential donor to justify the risk inherent in it. For example, in Re Y (Mental Patient: Bone Marrow Donation)2 approval was given for an adult patient lacking capacity to be a bone marrow donor on the ground that prolonging the life of the patient’s mother was likely to be of benefit to the patient. However, the judge doubted that the case would act as a useful precedent where more intrusive surgery was required.3 The judge referred to US cases4 in which it appeared that: ●● ●● ●●

the key factor was the presence or absence of a benefit to the potential donor; a close relationship between intended donor and recipient was often considered to be a necessary factor; a sufficient benefit may be found in the psychological benefit from the potential for a continuing relationship.

In the case of a child who might benefit from the survival of a healthy parent to bring it up, or a sibling to provide a normal family life, it might be thought that the ‘best interests’ tests might be satisfied, depending on the degree of risk involved, but each case will be entirely dependent on its own facts.5 1 2

Re A (Male Sterilisation) [2000] 1 FLR 549 at 555; Code F on Donation, Pt 1, Glossary p 31. See Chapter 4: Deciding for Others – Children; Chapter 3: Deciding for Others – Adults, above. [1997] Fam 110 per Connell J, referred to in An NHS Foundation Trust v MC [2020] EWCOP 33 at §12.

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19.16  Human Organ and Tissue Donation 3 Ibid at 116. 4 Curran v Bosze 566 NE 2d 1319 (1990). 5 For US cases in which organ/tissue donation has been sanctioned, see Little v Little 576 W 2d 493 (1979); Strunk v Strunk 445 SW 2d 145 (1969); Hart v Brown 289 A 2d 386 (1972). For an interesting recent review article see Should Parents Make Martyrs of Their Children?: An Argument for Private Regulation of Savior Siblings, Samantha Stoma, Seton Hall Law (2021): see bit.ly/SetonHall-Stoma-2021.

Approval by the Human Tissue Authority 19.17 In all cases of proposed donation by a living donor, the following steps must be taken:1 ●● ●●

the doctor with clinical responsibility for the donor must refer the case to the Human Tissue Authority; a person approved by the Authority must interview: –– the donor; –– if different, the person giving consent; –– the recipient.

Such approved persons are called ‘Independent Assessors’ (‘IA’) by the Authority. They are specially trained and accredited professionals and must be current (or recently retired) medical consultants, someone of equivalent registered professional status or a professional working in a hospital environment. They are usually based in hospitals with transplant units or referring nephrology units and act both as a representative of the Authority and as an advocate for the donor.2 The Assessor must then report a number of matters to the Authority, including:3 ●● ●● ●● ●● ●● ●●

whether there is any evidence of duress or coercion affecting the decision to consent; any evidence of an offer of a reward; any difficulties of communication with the person interviewed and an explanation of how those difficulties were overcome; the name and qualifications of the person giving consent; the capacity of the person interviewed to understand the nature of the medical procedure and its risks, and understand that consent may be withdrawn at any time before removal of the transplantable material; the information given to the potential donor (or other person giving consent) as to the nature of the medical procedure and the risk involved.4

The Assessor is expected to state whether the relevant requirements of the Act and the regulations have been met.5 The Authority must take the report into account and decide if it is satisfied that: ●● ●●

no reward has been or is to be given in contravention of the statutory prohibition; consent has been given or the removal is otherwise lawful.

Code F on Donation Pt 1 (at para 36) refers the reader to the ‘Guidance to transplant teams and Independent Assessors’ for practical guidance, template referral letters and other forms and user guides. Code F on Donation provides that arrangements for the statutory interview can be made at the point at which the referral letter is received by an appropriately trained IA and that if the

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Human Organ and Tissue Donation 19.18 circumstances require it, referral is made to an IA who has received enhanced training; and that some panel cases require increased scrutiny.6 The decision of the Authority must be taken by a panel of no fewer than three members if:7 ●● ●●

the donor is a child, or an adult lacking capacity to consent and the material is an organ or part of an organ to be used to the same purpose as an entire organ in the human body; or the donor is an adult with capacity and the case involves ‘paired donations’, ‘pooled donations’ or a ‘non-directed altruistic donation’.

These types of case are considered below. The Authority must then notify the donor, recipient and doctor of its decision. The Authority may reconsider its decision if required to do so by any such person or if satisfied that any material information it received was false or misleading or there has been a material change of circumstances. A person requiring reconsideration has a right to appear before and be heard by the meeting of the Authority at which the matter is reconsidered.8 1

Human Tissue Act 2004 (Persons who Lack Capacity to Consent and Transplants) Regulations 2006 (SI 2006/1659), reg 11. 2 Code F on Donation, Pt 1, paras 80–110 set out the involvement of the IA. (Note: Once accredited by the HTA, IAs act as a representative of both the donor and the HTA in order to help the HTA ensure the requirements of the Human Tissue Act 2004 have been met: see https://bit.ly/HTA-About-IAs: ‘The IA role involves interviewing the donor and recipient to explore whether the requirements of the legislation have been met. IAs do not determine the medical suitability of the donor or recipient. Although they work closely with teams in the units, it is important that they bring an “independence of mind” to the IA interview and that any information they might have heard prior to the interview is not used.’ See also the HTA website ‘the Independent Assessment Process’: see bit.ly/HTA-Guidance: ‘The IA interviews the donor and recipient both separately and together on behalf of the HTA and is independent of the healthcare teams who are involved with the medical process’. 3 SI 2006/1659, reg 11(8) and (9); Code F on Donation, paras 35–39. 4 Code F on Donation, Pt 1, para 38(a). 5 Ibid, para 98. 6 Ibid, part 1, paras 77 and 105 respectively. 7 SI 2006/1659, reg 12 and see Code F on Donation, paras 102–105. 8 SI 2006/1659, regs 13 and 14.

Types of donation by living donors 19.18 As described at para 19.9 above, the Authority classifies living donations into five types of living organ donation: Directed donation – genetically or emotionally related organ donation This is a form of donation in which the potential donor wishes to donate an organ to a specific recipient who is genetically or ‘emotionally’ related to the donor. The Authority exercises a relatively loose control over this category in that a proposed donation does not usually have to be considered by its panel but only by the Executive unless it comes within one of the five categories which are required by the regulations to be considered by the panel. The regulations

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19.18  Human Organ and Tissue Donation make no reference to ‘emotional’ relationships, and it is suggested it is not helpful to refer to relationships in such terms for this purpose. Directed altruistic donation As above but where two conditions are fulfilled: (a) donation is directed to a specified individual and (b) there is no evidence of a qualifying genetic or pre-existing emotional relationship. The cases tend to be characterised by a third party – a person or mechanism such as social networking site – bringing donor and recipient together for the purpose of transplantation. Paired/pooled organ donation In some cases a close relation, friend or partner of a person in need of an organ transplant is willing to donate an organ but is found to be incompatible. In such circumstances it is sometimes possible to arrange for an exchange with another pair with the same problem. They may be matched with another donor and recipient in the same situation in the National Living Donor Kidney Sharing Scheme (UKLKSS). The donor organs are then swapped. This is known as ‘paired donation’. Where more than two pairs are involved, the arrangement is described as a ‘pooled donation’. Where a pair in such a situation indicates a willingness to undergo this type of donation that pair is registered and a match sought. If a match is found the Authority undertakes the process described above. The approval must be made by a panel of at least three members. The assessment of each pair is undertaken by separate independent assessors, but the reports are considered jointly by the Authority.1 Non-directed – altruistic organ donation That is where a potential donor offers to donate an organ to anyone who might benefit, including a complete stranger. Again, the approval decision must be made by a panel of at least three Authority members. When interviewing the donor the assessor is required to ensure that there is a valid consent, that the donor is not subject to duress or financial inducement, and is aware that under no circumstances will either the donor or the recipient know the other’s identity before the procedure. The Authority considers the case for approval before a potential recipient is looked for and accordingly a recipient interview cannot be undertaken in such cases as there is no identified recipient at the time of the interview.2 Non-directed – altruistic donor chains A non-directed altruistic donor donates their organ into the paired/pooled scheme. By matching two or more recipients, a chain of operations can be carried out. The remaining organ at the end of the chain is then donated to the best matched recipient on the national waiting list. Every three months NHS Blood and Transplant undertakes a matching run which matches pairs of donors and recipients together based on a range of factors. These include tissue type compatibility and blood group. By matching two or more donors and recipients, a chain of operations can be carried out. The remaining organ at the end of the chain is then donated to the best-matched recipient on the national waiting list.3 694

Human Organ and Tissue Donation 19.19 Post-mortem donation Provided that the activity is undertaken with ‘appropriate consent’, the Act4 renders lawful the following activities for the purposes of transplantation: ●● ●● ●● ●●

the storage of a dead body; its use; the removal from a dead body of relevant material; the storage of such material.

1 Code F on Donation, Pt 1, paras 102–103. For the Authority’s process generally see the Authority’s website: www.hta.gov.uk/guidance-public/living-organ-donation. 2 Code F on Donation, part 1, para 86. See generally, Guidance on the Authority’s website, see bit.ly/HTA-Deceased-Donation-Guidance. 3 See bit.ly/HTA-Living-Guidance. 4 Human Tissue Act 2004 s 1.

Consent – children 19.19 A child, if Gillick competent, may give a consent for organ donation after their death, and this will be effective if in force at the time of death.1 Such a consent may be in writing, for example by way of registration on the Organ Donor Register,2 but it may also be given orally. Therefore an oral consent may be evidenced by a conversation with a relative or a nurse. Transplant co-ordinators are advised as a matter of good practice to discuss such a consent with parents and take their views into account.3 The current Code does not suggest, as it does in the case of the adult deceased,4 that a child’s consent cannot be overridden as a matter of law by the parents or others. There is nothing in the Act to suggest that parents have a right of veto, but the tenor of the Code remains that the views of parents should be respected. If no such consent was given by the child, it may be provided by: ●● ●●

a person having parental responsibility immediately before the death; or, if there is no such person, by a person in a ‘qualifying relationship’.5 This includes spouses, partners, and ‘friends of long standing’ as well as close family relations.6 Persons within the definition should be approached in the order in which they appear in the statutory definition, as consent should be obtained from the highest ranked person available.7 Where persons in a qualifying relationship disagree, the view of the highest ranked prevails. Where there is a conflict between those accorded equal ranking, the Code encourages sensitive discussion with all parties whilst explaining that the consent of one of those ranked equally is sufficient for the procedure to go ahead.8 However, where there is strongly expressed dissent the clinicians may decide not to proceed in recognition of the sensitivity of the situation. The appropriate consent renders organ donation lawful if it is carried out, but it is not obligatory to do so. Great care must be taken not to impose one person’s views on others and, where there is disagreement, the clinicians have to decide whether the benefits of proceeding are outweighed by strongly expressed objections.

1 Section 2(7). 2 www.organdonation.nhs.uk/register-your-decision/ and see Code F on Donation, Pt 2, paras 108–119.

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19.19  Human Organ and Tissue Donation 3 4 5 6

7 8

Code on Consent, paras 133–134. Code A on Consent, para 83. Ibid, para 93. Section 54(9). See also CM v The Executor of the Estate of EJ (deceased) [2013] EWHC 1680 (Fam) in which tissue samples were taken from the body of a deceased (adult) person following the consent of a distant relative, who could be regarded as a ‘friend of longstanding’. In Bagguley v E [2019] EWCOP 49 Hayden J (at 25) held that the terms ‘Appropriate Consent’ and ‘Qualifying Consent’ are mirror concepts in the Act, defined by s 3(6) and Sch 4 para 2 respectively. There is specific provision in s 3(6) for consent to be given by a range of qualifying family members, including a parent (HTA s 54(9)), in respect of the use of the bodily samples of a person who has died Anderson v Spencer [2018] EWCA Civ 100 §28). Code A on Consent, paras 32–33. Ibid, paras 32–39.

Consent – adults 19.20 Deemed consent applies in England and modifies the appropriate consent provisions. The circumstances in which consent can be deemed are set out in the Act (s 3(6) as amended) and the Codes (in particular Code F on Donation, Pt 2, paras 152–161). The Organ Donation (Deemed Consent) Act 2019 means that, in England, all individuals over 18 are considered potential organ and tissue donors after death, unless (1) they make a decision that they do not want to be a donor, (2) they have nominated a representative to make a decision on their behalf after death, or (3) they are an excepted adult. Deemed consent will only apply to certain organs and tissue: the list of organs and tissue excluded from deemed consent is set out in the Human Tissue (Permitted Material: Exceptions) (England) Regulations 2020.1 The 2019 Act creates a particular legal role for individuals who stood in a ‘qualifying relationship’ to a potential donor.2 As the Code acknowledges, in practice, there may be other people involved in the end-of-life care of an individual, beyond those who stood in qualifying relationship, who may be able to provide background knowledge and assist in establishing their decision with regard to donation. The Code uses the term family to denote this wider group and which encompasses those in a qualifying relationship as well as other family members, close friends and those who may have been familiar with the faith and beliefs of the potential donor. This Code outlines the role of the family in the donation process and distinguishes this from the legal role of individuals standing in a qualifying relationship to the potential donor. Ultimately, in all cases of donation, the decision of the potential donor either to consent, or not to consent to donation of organs or tissue for transplantation remains paramount.3 However, the starting point for a non-excluded adult is now essentially reversed so that where an adult has neither: (a) made a decision on donation before their death; nor (b) appointed a nominated representative to make a decision on their behalf after death, consent will be considered to be in place.4 Where consent could be deemed but there is no family to speak with to establish the individual’s last known decision, donation should not proceed.5 Deemed consent aside, an adult may give consent for organ donation after their death and this will be effective if in force at the time of death.6 Such consent is commonly given by registration with the Organ Donor Register7 but may

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Human Organ and Tissue Donation 19.21 also be contained in a will. However, the Act does not require consent for this purpose to be in writing at all.8 Therefore transplant co-ordinators are advised not only to search the register but also to approach the deceased’s family and close friends to establish their known wishes. If such consent is not in force at death it may be provided by:9 ●●

●●

a representative nominated under the Act: such a nomination may be general or limited to specified activities. The nomination may be in writing or orally. A written nomination must be signed, in the presence of at least one witness who attests the signature or be contained in a valid will. An oral nomination is valid only if given before two witnesses present at the same time. The nominee must be an adult and not of a description prescribed by regulations. a person in a qualifying relationship if no other form of consent is available.10

While relatives should as a matter of good practice be consulted, they cannot overrule the expressed wishes of the deceased or of a nominated representative. However, it is recognised that there may be cases where proceeding with a donation against the opposition of relations and close friends may be inappropriate.11 1 Code F on Donation, Pt 2, para 19. 2 Ibid, Pt 2, para 27. 3 Ibid, Pt 2, para 63. 4 Ibid, Pt 2, para 66. 5 Ibid, Pt 2, para 91. 6 Section 3(6). 7 www.organdonation.nhs.uk. 8 Section 3: written consent is required for certain other activities under the Act (public display and anatomical examination): see s 3(3) and (4). 9 Section 3(6) and 4. 10 Section 3(6)–(8). ‘Qualifying relationship’ is defined as in para 19.20 above. 11 Code on Consent, para 90. For practical clinical guidance see Guidelines for consent for solid organ transplantation in adults, NHS Blood And Transplant, British Transplantation Society (September 2015): see bit.ly/NHSBT-Guide-Sep15.

Preservation of organs after death 19.21 The common law is of limited assistance with regard to the care and treatment of dead bodies.1 There is no right of property in a body,2 with the exception of a body or body part which has been subjected to the application of special skill.3 However, there will exist a right to possession of the body, if only for the purpose of burial or cremation. Doctors can be in lawful possession of a body following death until such time as control is handed over to the family or whoever assumes responsibility for appropriate disposal of the remains. There can, however, be a proprietary right over parts of a body or tissues or organs which have been removed from it.4 Where organs have been removed lawfully after death, it appears that the right to possession is retained by the hospital responsible for the removal.5 It seems unlikely therefore that, for instance, the parent of a child who consented in advance of death to organ donation, has a proprietary right over the organ once removed. The Human Tissue Act 2004 removes the doubt that may previously have existed with regard to some activities ancillary to transplant procedures. It expressly authorises the storage and use of bodies so long as ‘appropriate 697

19.21  Human Organ and Tissue Donation consent’ has been obtained. While preservation is not specifically mentioned in the Act, it is clearly intended to be authorised as a necessary part of the process of storage. It appears therefore that the attending clinicians may lawfully retain the body of a person for the purpose of performing lawful activities authorised in pursuance of the Act. It is suggested that these include the taking of appropriate steps to preserve organs for transplant, even while they remain in the body. Code F on Donation Pt 2 suggests that s 43 of the Act authorises the preservation of a body even if consent has not yet been obtained, in order for steps to be taken to establish whether consent has been given or, if it has not been, to obtain consent from a nominated representative or a qualifying relation. In such circumstances the clinicians may take the minimum steps needed to preserve the relevant material for transplantation using the least invasive means and to retain the body for that purpose. However, such activities must cease as soon as it is clear that no consent is going to be given.6 1 See Australian Law Commission, Report No 7, Human Tissue Transplants, (1977), paras 56–58. 2 R v Kelly [1999] QB 621, 630; A v Leeds Teaching Hospitals NHS Trust [2004] EWHC 644, [2005] QB 506 (QB) at para 135. 3 Doodeward v Spence (1908) 6 CLR 406, 413, 414; AB (ibid). See Chapter 18: The End of Life, para 18.30. 4 A v Leeds Teaching Hospitals NHS Trust (n2, above) at paras 148 and 160. See also Yearworth v North Bristol NHS Trust [2009] EWCA 37. While Yearworth concerns the proprietary rights over tissue removed from a living patient, it is consistent with what is said here. 5 A v Leeds Teaching Hospitals NHS Trust (n2, above) at para 161. However, a duty of care may be owed to parents in relation to the taking of consent and similar matters. 6 Code F on Donation, Pt 2, paras 209–218.

Preparatory steps taken before death 19.22 Until recently, most organ transplants have been achieved with organs taken from donors who have been kept on life-support machines and have eventually been declared dead by use of the ‘brain stem death’ test.1 Increasing attention is now being paid to the possibility of obtaining organs from what are termed ‘non-heart-beating donors’.2 This method of donation, now referred to as ‘Donation after Circulatory Death’ (‘DCD’), involves patients whom it is not appropriate to treat on life support machines, but whose death is predictable, and whose organs are considered available for removal once death has been determined, using criteria for death diagnosed and confirmed using cardiorespiratory criteria.3 Because of the fast rate at which organs deteriorate after death, the question arises whether it is lawful to take any steps prior to death in order to maximise the chances of preserving organs after death. These might range from the insertion of a cannula to facilitate venous access after death, the intravenous administration during life of blood thinning medication, to prolonging life by life-support techniques to allow the appropriate resources for organ harvesting and transplantation to be marshalled, or for consent to be obtained. It is highly unlikely that such steps would be practicable or desirable at any time while a dying patient was actually conscious. However, it is possible that a prospective organ donor could consent in advance to such procedures. So long as what was proposed was unlikely to do harm to the patient, in the sense of shortening life or causing pain and suffering, it is suggested that such consent could lawfully be given and the steps lawfully taken. 698

Human Organ and Tissue Donation 19.22 Even if such consent has not been given but the patient is known to have consented to organ donation following death (or deemed consent applies), the question can arise whether preparatory steps could lawfully be taken. If, as will occur in most cases, the patient is unconscious and therefore incapable of giving consent, the issue would be whether such steps could be considered to be in the patient’s best interests. Clearly, as with organ donation itself, such steps would not be in the patient’s best medical interests, but, as has been seen,4 the ‘best interests’ tests embrace many other considerations. It might be argued that action designed to maximise the prospects of fulfilling the patient’s wishes with regard to organ donation would be in their best interests, so long as such action was not positively detrimental to the patient’s own well-being and to their interest in a dignified death. The extent to which ‘deemed consent’ would represent the patient’s ‘wishes’ could come down to the views of relatives and friends visiting the patient shortly before any decision being taken. Indeed, Code F on Donation (part 2) makes clear that the family play a crucial role in the donation process.5 In November 2009 the Department of Health published guidance on nonheart-beating donation in response to the recommendation of the Organ Donation Taskforce report of January 2008, that ‘urgent attention is required to resolve outstanding legal, ethical and professional issues in order to ensure that all clinicians are supported and are able to work within a clear and unambiguous framework of good practice’.6 The Guidance provided: ●●

●●

[1.6]: ‘If a person’s wishes were to be a donor, then certain actions which facilitate donation may be considered to be in their best interests if they do not cause the person harm or distress or place them at a material risk of experiencing harm or distress.’7 [5.2]: ‘Clinicians must consider whether any of the actions taken to facilitate or optimise donation carry with them any risk of harm or distress to the patient. They will need also to have regard to a person’s best interests in personal dignity, especially when close to death. Examples of potential harm include: (a) (b) (c) (d)

worsening of the patient’s medical condition; shortening of the patient’s life; pain from an invasive procedure; and distress to family and friends.

Clinical teams will need to balance these risks against the knowledge that they have regarding a patient’s wish to donate.’ ●●

●●

[6.9]: ‘Taking blood and testing blood or serum samples may […] be considered to be in the best interests of someone who wanted to be a donor if they facilitate donation and do not cause the person distress or harm.’ [6.12]: ‘[…] [I]f a person has been identified as a person who would have wanted to be a donor, then certain interventions which facilitate donation can be viewed as being in their best interests on the basis that the interventions promote what the person would have wanted and how they are remembered. Before reaching a decision, consideration must be given to the risk of harm or distress the patient or their family may experience. If there is a significant risk of the intervention causing harm or distress it will not be in the person’s best interests.’ 699

19.22  Human Organ and Tissue Donation The Guidance provides specific advice about invasive treatments and interventions. It states8 that other more invasive steps could include: (a) systemic heparinisation; (b) resuscitation; and (c) femoral cannulation. In relation to these measures, the Guidance states that: ‘Anything that places the person at risk of serious harm (such as systemic heparinisation) or distress (such as resuscitation) is unlikely ever to be in the person’s best interests in this situation. A clinician would need strong and compelling reasons to consider these types of actions and would be recommended to seek a declaration from the Court of Protection in relation to the person’s best interests before doing so.’9 This view has been criticised by the UK Donation Ethics Committee. In a document titled ‘An Ethical Framework for Controlled Donation after Circulatory Death’, the Committee states: ‘[T]here is a growing view that this stance on heparin in particular needs to be revisited, as heparin or equivalent medication is considered a beneficial (and in some cases an essential) element of some transplantation protocols, while the risk of harm to the donor varies substantially and would be better assessed on a case-by-case basis.’10 As the use of non-heart-beating donation becomes more prevalent, the pressure to reach a consensus on the ethical and legal correctness of taking invasive preparatory steps has increased. This is an area which is ripe for judicial determination. Where consent is deemed, there are particular considerations about activities before death, which are outlined in Code F on Donation (part 2).11 The Code acknowledges: ‘An area of development in retrieval surgery is organ recovery. During the dying process organ injury can occur. Organ recovery seeks to maintain and improve viability leading to high quality organ transplants, as well as using organs that previously would not have been considered transplantable. Organ recovery procedures use machine perfusion of the organs, which takes place either in the donor after death (in situ) or on the organ following retrieval from the donor in specialist machines (ex situ)’.12 1 See Australian Law Commission, Report No 7, Human Tissue Transplants, (1977), paras 56– 58. This is known as ‘Donation after Brainstem Death’ (DBD). For the meaning of brain stem death: see Chapter 18: The End of Life. 2 For consensus guidance on practice in this area, see UK Guidance for Non-Heart Beating Donation (2005) 95 British Journal of Anaesthesia 592–595, and United Kingdom Guidelines: Transplantation From Donors After Deceased Circulatory Death, British Transplant Society (2013). The first non-heart beating heart transplant took place in the UK in 2015 involving the transplant of a heart five minutes after the donor’s death: Guardian, 26 March 2015: http://bit.ly/2axPwTo. The annual number of organ donors diagnosed as brain dead was 735 in 2000/01, 785 in 2015/16 and 946 in 2019/2020, whereas those identified through circulatory death had risen from 42 in 2000/01 to 579 in 2015/16 and 634 for 2019/2020: Organ Donation and Transplantation Activity Reports, NHS Blood and Transplant; https:// bit.ly/UKT-Stats-2001. For statistics covering 2020–2021 see https://bit.ly/NHS-OrganDonation Figures for 2020–2021 are significantly lower due to the Covid-19 Pandemic and the report provides: “Concerns about the ability to care for transplant recipients, lack of access to resource because it is being used for patients in the pandemic, and the risk versus benefit for immunosuppressed transplant recipients, have resulted in a major reduction in the number of organ transplants undertaken …” – Activity Report 2020/21 p 3: see bit.ly/UKTStats-2020-21. 3 See bit.ly/ODT-Clinical-After-Death. UK Guidance for Non-Heart Beating Donation, cited at n2 above.

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Human Organ and Tissue Donation 19.23 4 See para 19.16 above. 5 Paragraphs 79–91. 6 Legal issues relevant to non-heart beating organ donation, DH (November 2009): http://bit. ly/29Z2HvJ. 7 This appears to confirm the view we set out in this section. 8 At paragraph 6.13. 9 At paragraph 6.14. 10 At para 3.2.2; published in December 2011: https://bit.ly/AoMRC-Donation-Ethics-Com. 11 Paragraphs 209–218. 12 Paragraph 217.

D CONCLUSION 19.23 Organ and tissue transplantation raises issues of considerable social and ethical concern and there is an understandable demand for regulation and the outlawing of unacceptable practice. Rapid advances in what is technically and clinically possible mean that the law is always in danger of being left behind.1 The perceived shortage of willing organ donors prompted Parliament to introduce deemed consent. In 2020 it was said that more than 5,000 people in England were waiting for a transplant, but, sadly, by the time a suitable organ was found some had become too ill to receive one and, tragically, 777 patients were removed from the transplant list in 2019 and 400 died waiting for a transplant. It was said there was no option but to take decisive action to address the acute shortage of organs and save the lives of those waiting for a transplant.2 The shortage also increased pressure to review the prohibition of ‘selling’ organs, and to find new ways of obtaining organs as quickly as possible after the death of the donor. This in turn has led to a reconsideration of the means of diagnosing death. It is no coincidence that the Human Tissue Authority issued revised Codes of Practice within five years of the publication of the first version and undertook further wholesale revision again in 2020. Such demands mean that this is an area of law which is likely to be the subject of increasing court scrutiny. However, the fundamental tenet of the law in this area is, and has to remain, consent along with the right of an individual to decide for themselves what is done with their organs and tissue while alive, and to their body after death. The function of the law is to protect respect for that autonomy and to prevent abuse and exploitation of the vulnerable. 1

2

Yuval Noah Harari in Sapiens: A Brief History of Humankind (2014, Vintage) comments, ‘… there seems no insurmountable technical barrier preventing us from producing superhumans. The main obstacles are the ethical and political objections that have slowed down research on humans. And no matter how convincing the ethical arguments may be, it is hard to see how they can hold back the next step for long, especially if what is at stake is the possibility of prolonging human life indefinitely, conquering incurable diseases and upgrading our cognitive and emotional abilities … Tinkering with our genes won’t necessarily kill us. But we might fiddle with Homo sapiens to such an extent that we would no longer be Homo sapiens’ (p 452). Minister for Care, Hansard, Vol 686 (19 May 2020).

For updating material and hyperlinks related to this chapter, see www.serjeantsinn.com/news-and-resources/medical-treatment-decisions/

701

702

Appendix 1

Mental Capacity Act 2005 Sections 1–6, 15–17, 20–21A, 24–28, 35–38

PART 1 PERSONS WHO LACK CAPACITY The principles 1 The principles (1) (2) (3) (4) (5) (6)

The following principles apply for the purposes of this Act. A person must be assumed to have capacity unless it is established that he lacks capacity. A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success. A person is not to be treated as unable to make a decision merely because he makes an unwise decision. An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests. Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.

Preliminary 2 People who lack capacity (1)

(2) (3)

(4) (5)

(6)

For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain. It does not matter whether the impairment or disturbance is permanent or temporary. A lack of capacity cannot be established merely by reference to (a) a person’s age or appearance, or (b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity. In proceedings under this Act or any other enactment, any question whether a person lacks capacity within the meaning of this Act must be decided on the balance of probabilities. No power which a person (‘D’) may exercise under this Act (a) in relation to a person who lacks capacity, or (b) where D reasonably thinks that a person lacks capacity, is exercisable in relation to a person under 16. Subsection (5) is subject to section 18(3). 703

Appendix 1

3 Inability to make decisions (1)

(2)

(3) (4)

For the purposes of section 2, a person is unable to make a decision for himself if he is unable (a) to understand the information relevant to the decision, (b) to retain that information, (c) to use or weigh that information as part of the process of making the decision, or (d) to communicate his decision (whether by talking, using sign language or any other means). A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means). The fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision. The information relevant to a decision includes information about the reasonably foreseeable consequences of (a) deciding one way or another, or (b) failing to make the decision.

4 Best interests (1)

(2) (3)

(4) (5) (6)

In determining for the purposes of this Act what is in a person’s best interests, (a) the person making the determination must not make it merely on the basis of the person’s age or appearance, or (b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about what might be in his best interests. The person making the determination must consider all the relevant circumstances and, in particular, take the following steps. He must consider (a) whether it is likely that the person will at some time have capacity in relation to the matter in question, and (b) if it appears likely that he will, when that is likely to be. He must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him. Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death. He must consider, so far as is reasonably ascertainable (a) the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity), (b) the beliefs and values that would be likely to influence his decision if he had capacity, and

704

Appendix 1 (c) the other factors that he would be likely to consider if he were able to do so. (7) He must take into account, if it is practicable and appropriate to consult them, the views of (a) anyone named by the person as someone to be consulted on the matter in question or on matters of that kind, (b) anyone engaged in caring for the person or interested in his welfare, (c) any donee of a lasting power of attorney granted by the person, and (d) any deputy appointed for the person by the court, as to what would be in the person’s best interests and, in particular, as to the matters mentioned in subsection (6). (8) The duties imposed by subsections (1) to (7) also apply in relation to the exercise of any powers which (a) are exercisable under a lasting power of attorney, or (b) are exercisable by a person under this Act where he reasonably believes that another person lacks capacity. (9) In the case of an act done, or a decision made, by a person other than the court, there is sufficient compliance with this section if (having complied with the requirements of subsections (1) to (7)) he reasonably believes that what he does or decides is in the best interests of the person concerned. (10) ‘Life-sustaining treatment’ means treatment which in the view of a person providing health care for the person concerned is necessary to sustain life. (11) ‘Relevant circumstances’ are those (a) of which the person making the determination is aware, and (b) which it would be reasonable to regard as relevant.

4A Restriction on deprivation of liberty (1) (2) (3) (4) [(5) [(5)

1 2

This Act does not authorise any person (‘D’) to deprive any other person (‘P’) of his liberty. But that is subject to (a) the following provisions of this section, and (b) section 4B. D may deprive P of his liberty if, by doing so, D is giving effect to a relevant decision of the court. A relevant decision of the court is a decision made by an order under section 16(2)(a) in relation to a matter concerning P’s personal welfare. D may deprive P of his liberty if the deprivation is authorised by Schedule A1 (hospital and care home residents: deprivation of liberty).]1 D may deprive P of liberty if, by doing so, D is carrying out arrangements authorised under Schedule AA1 (arrangements enabling the care and treatment of persons who lack capacity).]2

Version 1 is currently in force but will be replaced on a date to be appointed by Version 2. Version 2 is not yet in force save for permitting regulations to be made.

705

Appendix 1

[4B Deprivation of liberty necessary for life-sustaining treatment etc 1 (1) (2) (3)

(4)

(5)

If the following conditions are met, D is authorised to deprive P of his liberty while a decision as respects any relevant issue is sought from the court. The first condition is that there is a question about whether D is authorised to deprive P of his liberty under section 4A. The second condition is that the deprivation of liberty— (a) is wholly or partly for the purpose of— (i) giving P life-sustaining treatment, or (ii) doing any vital act, or (b) consists wholly or partly of— (i) giving P life-sustaining treatment, or (ii) doing any vital act. The third condition is that the deprivation of liberty is necessary in order to— (a) give the life-sustaining treatment, or (b) do the vital act. A vital act is any act which the person doing it reasonably believes to be necessary to prevent a serious deterioration in P’s condition.]1

[4B Deprivation of liberty necessary for life-sustaining treatment or vital act 1 (1) If Conditions 1 to 4 are met, D is authorised to take steps which deprive P of liberty. (2) Condition 1 is that the steps— (a) are wholly or partly for the purpose of giving P life-sustaining treatment or doing any vital act, or (b) consist wholly or partly of giving P life-sustaining treatment or doing any vital act. (3) A vital act is any act which the person doing it reasonably believes to be necessary to prevent a serious deterioration in P’s condition. (4) Condition 2 is that the steps are necessary in order to give the life sustaining treatment or do the vital act. (5) Condition 3 is that D reasonably believes that P lacks capacity to consent to D taking the steps. (6) Condition 4 is that— (a) subsection (7) applies, or (b) there is an emergency. (7) This subsection applies if— (a) a decision relevant to whether D is authorised to deprive P of liberty is being sought from the court, or (b) a responsible body is carrying out functions under Schedule AA1 with a view to determining whether to authorise arrangements that give rise to a deprivation of P’s liberty. (8) In subsection (7) it does not matter— (a) whether the decision mentioned in paragraph (a) relates to the steps mentioned in subsection (1); (b) whether the arrangements mentioned in paragraph (b) include those steps. 706

Appendix 1 (9)

1 2

There is an emergency if D reasonably believes that— (a) there is an urgent need to take the steps mentioned in subsection (1) in order to give the life-sustaining treatment or do the vital act, and (b) it is not reasonably practicable before taking those steps— (i) to make an application for P to be detained under Part 2 of the Mental Health Act, (ii) to make an application within subsection (7)(a), or (iii) to secure that action within subsection (7)(b) is taken.]2

Version 1 is currently in force but will be replaced on a date to be appointed by Version 2. Version 2 is not yet in force save for permitting regulations to be made.

[4C Carrying out of authorised arrangements giving rise to deprivation of liberty (1) (2)

(3) (4) (5) 1

This section applies to an act that a person (“D”) does in carrying out arrangements authorised under Schedule AA1. D does not incur any liability in relation to the act that would not have been incurred if the cared-for person— (a) had had capacity to consent in relation to D doing the act, and (b) had consented to D doing the act. Nothing in this section excludes a person’s civil liability for loss or damage, or a person’s criminal liability, resulting from that person’s negligence in doing the act. Paragraph 31 of Schedule AA1 applies if an authorisation ceases to have effect in certain cases. “Cared-for person” has the meaning given by paragraph 2(1) of that Schedule.]1

This section is not yet in force save for permitting regulations to be made.

5 Acts in connection with care or treatment (1)

(2)

(3) (4)

If a person (‘D’) does an act in connection with the care or treatment of another person (‘P’), the act is one to which this section applies if (a) before doing the act, D takes reasonable steps to establish whether P lacks capacity in relation to the matter in question, and (b) when doing the act, D reasonably believes (i) that P lacks capacity in relation to the matter, and (ii) that it will be in P’s best interests for the act to be done. D does not incur any liability in relation to the act that he would not have incurred if P (a) had had capacity to consent in relation to the matter, and (b) had consented to D’s doing the act. Nothing in this section excludes a person’s civil liability for loss or damage, or his criminal liability, resulting from his negligence in doing the act. Nothing in this section affects the operation of sections 24 to 26 (advance decisions to refuse treatment).

707

Appendix 1

6 Section 5 acts: limitations (1) (2) (3) (4)

(5) (6)

(7)

1

If D does an act that is intended to restrain P, it is not an act to which section 5 applies unless two further conditions are satisfied. The first condition is that D reasonably believes that it is necessary to do the act in order to prevent harm to P. The second is that the act is a proportionate response to (a) the likelihood of P’s suffering harm, and (b) the seriousness of that harm. For the purposes of this section D restrains P if he (a) uses, or threatens to use, force to secure the doing of an act which P resists, or (b) restricts P’s liberty of movement, whether or not P resists. 1… Section 5 does not authorise a person to do an act which conflicts with a decision made, within the scope of his authority and in accordance with this Part, by (a) a donee of a lasting power of attorney granted by P, or (b) a deputy appointed for P by the court. But nothing in subsection (6) stops a person (a) providing life-sustaining treatment, or (b) doing any act which he reasonably believes to be necessary to prevent a serious deterioration in P’s condition, while a decision as respects any relevant issue is sought from the court.

S.6(5) repealed (1.4.2009) by Mental Health Act 2007 (c.12), ss.50(4)(a), 55, 56, Sch.11 Pt 10; S.I. 2009/139, art.2(b)(f) (with art. 3).

General powers of the court and appointment of deputies 15 Power to make declarations (1)

(2)

The court may make declarations as to (a) whether a person has or lacks capacity to make a decision specified in the declaration; (b) whether a person has or lacks capacity to make decisions on such matters as are described in the declaration; (c) the lawfulness or otherwise of any act done, or yet to be done, in relation to that person. ‘Act’ includes an omission and a course of conduct.

16 Powers to make decisions and appoint deputies: general (1)

(2)

This section applies if a person (‘P’) lacks capacity in relation to a matter or matters concerning (a) P’s personal welfare, or (b) P’s property and affairs. The court may (a) by making an order, make the decision or decisions on P’s behalf in relation to the matter or matters, or 708

Appendix 1

(3) (4)

(5)

(6)

(7) (8)

(b) appoint a person (a ‘deputy’) to make decisions on P’s behalf in relation to the matter or matters. The powers of the court under this section are subject to the provisions of this Act and, in particular, to sections 1 (the principles) and 4 (best interests). When deciding whether it is in P’s best interests to appoint a deputy, the court must have regard (in addition to the matters mentioned in section 4) to the principles that (a) a decision by the court is to be preferred to the appointment of a deputy to make a decision, and (b) the powers conferred on a deputy should be as limited in scope and duration as is reasonably practicable in the circumstances. The court may make such further orders or give such directions, and confer on a deputy such powers or impose on him such duties, as it thinks necessary or expedient for giving effect to, or otherwise in connection with, an order or appointment made by it under subsection (2). Without prejudice to section 4, the court may make the order, give the directions or make the appointment on such terms as it considers are in P’s best interests, even though no application is before the court for an order, directions or an appointment on those terms. An order of the court may be varied or discharged by a subsequent order. The court may, in particular, revoke the appointment of a deputy or vary the powers conferred on him if it is satisfied that the deputy (a) has behaved, or is behaving, in a way that contravenes the authority conferred on him by the court or is not in P’s best interests, or (b) proposes to behave in a way that would contravene that authority or would not be in P’s best interests.

[16A Section 16 powers: Mental Health Act patients etc (1)

If a person is ineligible to be deprived of liberty by this Act, the court may not include in a welfare order provision which authorises the person to be deprived of his liberty. (2) If— (a) a welfare order includes provision which authorises a person to be deprived of his liberty, and (b) that person becomes ineligible to be deprived of liberty by this Act, the provision ceases to have effect for as long as the person remains ineligible. (3) Nothing in subsection (2) affects the power of the court under section 16(7) to vary or discharge the welfare order. (4) For the purposes of this section— (a) Schedule 1A applies for determining whether or not P is ineligible to be deprived of liberty by this Act; (b) “welfare order” means an order under section 16(2)(a)]1. 1

S.16A will be repealed and removed from the Act on a date to be appointed.

709

Appendix 1

17 Section 16 powers: personal welfare (1)

(2)

The powers under section 16 as respects P’s personal welfare extend in particular to— (a) deciding where P is to live; (b) deciding what contact, if any, P is to have with any specified persons; (c) making an order prohibiting a named person from having contact with P; (d) giving or refusing consent to the carrying out or continuation of a treatment by a person providing health care for P; (e) giving a direction that a person responsible for P’s health care allow a different person to take over that responsibility. Subsection (1) is subject to section 20 (restrictions on deputies).

20 Restrictions on deputies (1) (2)

(3)

(4)

(5) (6) (7) (8) (9) (10) (11) (12)

A deputy does not have power to make a decision on behalf of P in relation to a matter if he knows or has reasonable grounds for believing that P has capacity in relation to the matter. Nothing in section 16(5) or 17 permits a deputy to be given power— (a) to prohibit a named person from having contact with P; (b) to direct a person responsible for P’s health care to allow a different person to take over that responsibility. A deputy may not be given powers with respect to— (a) the settlement of any of P’s property, whether for P’s benefit or for the benefit of others, (b) the execution for P of a will, or (c) the exercise of any power (including a power to consent) vested in P whether beneficially or as trustee or otherwise. A deputy may not be given power to make a decision on behalf of P which is inconsistent with a decision made, within the scope of his authority and in accordance with this Act, by the donee of a lasting power of attorney granted by P (or, if there is more than one donee, by any of them). A deputy may not refuse consent to the carrying out or continuation of life-sustaining treatment in relation to P. The authority conferred on a deputy is subject to the provisions of this Act and, in particular, sections 1 (the principles) and 4 (best interests). A deputy may not do an act that is intended to restrain P unless four conditions are satisfied. The first condition is that, in doing the act, the deputy is acting within the scope of an authority expressly conferred on him by the court. The second is that P lacks, or the deputy reasonably believes that P lacks, capacity in relation to the matter in question. The third is that the deputy reasonably believes that it is necessary to do the act in order to prevent harm to P. The fourth is that the act is a proportionate response to— (a) the likelihood of P’s suffering harm, [and]1 (b) the seriousness of that harm. For the purposes of this section, a deputy restrains P if he— 710

Appendix 1 (a) uses, or threatens to use, force to secure the doing of an act which P resists, or (b) restricts P’s liberty of movement, whether or not P resists, or if he authorises another person to do any of those things. (13) …2 1 Word in s.20(11)(a) substituted (1.10.2007) by Mental Health Act 2007 (c.12), ss.51, 56; SI 2007/2635, art.2. 2 S.20(13) repealed (1.4.2009) by Mental Health Act 2007 (c.12), ss.50(4)(c), 55, 56, Sch.11, Pt 10; SI 2009/139, art.2(b)(f) (with art.3).

21 Transfer of proceedings relating to people under 18 [(1)1] The [Lord Chief Justice, with the concurrence of the Lord Chancellor,2] may by order make provision as to the transfer of proceedings relating to a person under 18, in such circumstances as are specified in the order— (a) from the Court of Protection to a court having jurisdiction under the Children Act 1989 (c 41), or (b) from a court having jurisdiction under that Act to the Court of Protection. [(2) The Lord Chief Justice may nominate any of the following to exercise his functions under this section— (a) the President of the Court of Protection; (b) a judicial office holder (as defined in section 109(4) of the Constitutional Reform Act 2005).3] 1 S.21 renumbered as s. 21(1) (3.4.2006) by virtue of The Lord Chancellor (Transfer of Functions and Supplementary Provisions) (No.2) Order 2006 (SI 2006/1016), arts 1, 2, Sch.1 para.31(2). 2 Words in s.21(1) substituted (3.4.2006) by The Lord Chancellor (Transfer of Functions and Supplementary Provisions) (No.2) Order 2006 (SI 2006/1016), arts 1, 2, Sch.1 para.31(3). 3 S.21(2) inserted (3.4.2006) by The Lord Chancellor (Transfer of Functions and Supplementary Provisions) (No.2) Order 2006 (SI 2006/1016), arts 1, 2, Sch.1 para.31(4).

Powers of the court in relation to Schedule AA1 [21ZA Powers of court in relation to Schedule AA1 (1)

(2)

(3)

This section applies where an authorisation under Schedule AA1— (a) has effect, or (b) is to have effect from a date specified under paragraph 28 of that Schedule. The court may determine any question relating to— (a) whether Schedule AA1 applies to the arrangements, or whether the authorisation conditions are met; (b) what period the authorisation has effect for; (c) what the authorisation relates to. If the court determines a question under subsection (2), the court may make an order— (a) varying or terminating the authorisation; (b) directing the responsible body to vary the authorisation. 711

Appendix 1 (4) (5) (6) 1

Where the court makes an order under subsection (3) the court may make an order about a person’s liability for anything done in carrying out the arrangements before the variation or termination. An order under subsection (4) may, in particular, exclude a person from liability. “Authorisation conditions” has the meaning given by paragraph 13 of Schedule AA1.1]

S.21ZA not yet in force.

Powers of the court in relation to Schedule A1 [21A Powers of court in relation to Schedule A1 (1)

(2)

(3)

(4)

(5)

(6)

(7) 1

This section applies if either of the following has been given under Schedule A1— (a) a standard authorisation; (b) an urgent authorisation. Where a standard authorisation has been given, the court may determine any question relating to any of the following matters— (a) whether the relevant person meets one or more of the qualifying requirements; (b) the period during which the standard authorisation is to be in force; (c) the purpose for which the standard authorisation is given; (d) the conditions subject to which the standard authorisation is given. If the court determines any question under subsection (2), the court may make an order— (a) varying or terminating the standard authorisation, or (b) directing the supervisory body to vary or terminate the standard authorisation. Where an urgent authorisation has been given, the court may determine any question relating to any of the following matters— (a) whether the urgent authorisation should have been given; (b) the period during which the urgent authorisation is to be in force; (c) the purpose for which the urgent authorisation is given. Where the court determines any question under subsection (4), the court may make an order— (a) varying or terminating the urgent authorisation, or (b) directing the managing authority of the relevant hospital or care home to vary or terminate the urgent authorisation. Where the court makes an order under subsection (3) or (5), the court may make an order about a person’s liability for any act done in connection with the standard or urgent authorisation before its variation or termination. An order under subsection (6) may, in particular, exclude a person from liability.1]

S 21A will be repealed on a date to be appointed.

712

Appendix 1

Advance decisions to refuse treatment 24 Advance decisions to refuse treatment: general (1)

(2) (3) (4) (5)

‘Advance decision’ means a decision made by a person (‘P’), after he has reached 18 and when he has capacity to do so, that if (a) at a later time and in such circumstances as he may specify, a specified treatment is proposed to be carried out or continued by a person providing health care for him, and (b) at that time he lacks capacity to consent to the carrying out or continuation of the treatment, the specified treatment is not to be carried out or continued. For the purposes of subsection (1)(a), a decision may be regarded as specifying a treatment or circumstances even though expressed in layman’s terms. P may withdraw or alter an advance decision at any time when he has capacity to do so. A withdrawal (including a partial withdrawal) need not be in writing. An alteration of an advance decision need not be in writing (unless section 25(5) applies in relation to the decision resulting from the alteration).

25 Validity and applicability of advance decisions (1)

(2)

(3) (4)

An advance decision does not affect the liability which a person may incur for carrying out or continuing a treatment in relation to P unless the decision is at the material time (a) valid, and (b) applicable to the treatment. An advance decision is not valid if P (a) has withdrawn the decision at a time when he had capacity to do so, (b) has, under a lasting power of attorney created after the advance decision was made, conferred authority on the donee (or, if more than one, any of them) to give or refuse consent to the treatment to which the advance decision relates, or (c) has done anything else clearly inconsistent with the advance decision remaining his fixed decision. An advance decision is not applicable to the treatment in question if at the material time P has capacity to give or refuse consent to it. An advance decision is not applicable to the treatment in question if (a) that treatment is not the treatment specified in the advance decision, (b) any circumstances specified in the advance decision are absent, or (c) there are reasonable grounds for believing that circumstances exist which P did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them.

713

Appendix 1 (5)

(6)

(7)

An advance decision is not applicable to life-sustaining treatment unless (a) the decision is verified by a statement by P to the effect that it is to apply to that treatment even if life is at risk, and (b) the decision and statement comply with subsection (6). A decision or statement complies with this subsection only if (a) it is in writing, (b) it is signed by P or by another person in P’s presence and by P’s direction, (c) the signature is made or acknowledged by P in the presence of a witness, and (d) the witness signs it, or acknowledges his signature, in P’s presence. The existence of any lasting power of attorney other than one of a description mentioned in subsection (2)(b) does not prevent the advance decision from being regarded as valid and applicable.

26 Effect of advance decisions (1) (2) (3)

(4)

(5)

If P has made an advance decision which is (a) valid, and (b) applicable to a treatment, the decision has effect as if he had made it, and had had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued. A person does not incur liability for carrying out or continuing the treatment unless, at the time, he is satisfied that an advance decision exists which is valid and applicable to the treatment. A person does not incur liability for the consequences of withholding or withdrawing a treatment from P if, at the time, he reasonably believes that an advance decision exists which is valid and applicable to the treatment. The court may make a declaration as to whether an advance decision (a) exists; (b) is valid; (c) is applicable to a treatment. Nothing in an apparent advance decision stops a person (a) providing life-sustaining treatment, or (b) doing any act he reasonably believes to be necessary to prevent a serious deterioration in P’s condition, while a decision as respects any relevant issue is sought from the court.

Excluded decisions 27 Family relationships etc (1)

Nothing in this Act permits a decision on any of the following matters to be made on behalf of a person— (a) consenting to marriage or a civil partnership, (b) consenting to have sexual relations, 714

Appendix 1

(2)

1

(c) consenting to a decree of divorce being granted on the basis of two years’ separation, (d) consenting to a dissolution order being made in relation to a civil partnership on the basis of two years’ separation, (e) consenting to a child’s being placed for adoption by an adoption agency, (f) consenting to the making of an adoption order, (g) discharging parental responsibilities in matters not relating to a child’s property, (h) giving a consent under the Human Fertilisation and Embryology Act 1990 (c 37) [1(i) giving a consent under the Human Fertilisation and Embryology Act 2008]. ‘Adoption order’ means— (a) an adoption order within the meaning of the Adoption and Children Act 2002 (c 38) (including a future adoption order), and (b) an order under section 84 of that Act (parental responsibility prior to adoption abroad).

S.27(1)(i) inserted (6.4.2009) by Human Fertilisation and Embryology Act 2008 (c.22), ss.56, 68, Sch.6 para.40; SI 2009/479, art.6(1)(d) (with transitional provisions in art.7 Sch.1).

28 Mental Health Act matters (1)

Nothing in this Act authorises anyone— (a) to give a patient medical treatment for mental disorder, or (b) to consent to a patient’s being given medical treatment for mental disorder, if, at the time when it is proposed to treat the patient, his treatment is regulated by Part 4 of the Mental Health Act. [(1A) Subsection (1) does not apply in relation to any form of treatment to which section 58A of that Act (electro-convulsive therapy, etc) applies if the patient comes within subsection (7) of that section (informal patient under 18 who cannot give consent).]1 [(1B) Section 5 does not apply to an act to which section 64B of the Mental Health Act applies (treatment of community patients not recalled to hospital).]2 (2) ‘Medical treatment’, ‘mental disorder’ and ‘patient’ have the same meaning as in that Act. 1 2

S.28(1A) inserted (3.11.2008) by Mental Health Act 2007 (c.12), ss. 28(10), 56; SI 2008/1900, art.2(g) (with art.3, Sch.). S.28(1B) inserted (3.11.2008) by Mental Health Act 2007 (c.12), ss. 35(5), 56; SI 2008/1900, art.2(k) (with art.3, Sch.).

Independent mental capacity advocate service 35 Appointment of independent mental capacity advocates (1)

The [responsible authority1] must make such arrangements as it considers reasonable to enable persons (“independent mental capacity advocates”) to be [available to represent and support persons to whom 715

Appendix 1 acts or decisions proposed under sections 37, 38 and 39 relate or persons who fall within section 39A, 39C or 39D.2] [available to— (a) represent and support persons to whom acts or decisions proposed under sections 37, 38 and 39 relate, (b) represent and support cared-for persons where paragraph 42 of Schedule AA1 applies, and (c) support appropriate persons where paragraph 43 of Schedule AA1 applies.2] (2) The appropriate authority may make regulations as to the appointment of independent mental capacity advocates. (3) The regulations may, in particular, provide— (a) that a person may act as an independent mental capacity advocate only in such circumstances, or only subject to such conditions, as may be prescribed; (b) for the appointment of a person as an independent mental capacity advocate to be subject to approval in accordance with the regulations. (4) In making arrangements under subsection (1), the [responsible authority3] must have regard to the principle that a person to whom a proposed act or decision relates should, so far as practicable, be represented and supported by a person who is independent of any person who will be responsible for the act or decision. (5) The arrangements may include provision for payments to be made to, or in relation to, persons carrying out functions in accordance with the arrangements. (6) For the purpose of enabling him to carry out his functions, an independent mental capacity advocate— (a) may interview in private the person whom he has been instructed to represent, and (b) may, at all reasonable times, examine and take copies of— (i) any health record, (ii) any record of, or held by, a local authority and compiled in connection with a social services function, and (iii) any record held by a person registered under Part 2 of the Care Standards Act 2000 (c. 14) [, Chapter 2 of Part 1 of the Health and Social Care Act 2008 or Part 1 of the Regulation and Inspection of Social Care (Wales) Act 2016 (anaw 2)4], [(6A) In subsections (1) and (4), “the responsible authority” means— (a) in relation to the provision of the services of independent mental capacity advocates in the area of a local authority in England, that local authority, and (b) in relation to the provision of the services of independent mental capacity advocates in Wales, the Welsh Ministers.5] [(6B) In subsection (6A)(a), “local authority” has the meaning given in section 64(1) except that it does not include the council of a county or county borough in Wales.5] (7) In this section, section 36 and section 37, ‘the appropriate authority’ means— (a) in relation to the provision of the services of independent mental capacity advocates in England, the Secretary of State, and

716

Appendix 1 (b) in relation to the provision of the services of independent mental capacity advocates in Wales, the National Assembly for Wales. 1 Words in s.35(1) substituted (1.4.2013) by Health and Social Care Act 2012 (c.7), s.306(4), Sch.5, para.134(a); SI 2013/160, art.2(2) (with arts 7–9). 2 Words in s.35(1) substituted (16.5.2019 for specified purposes) by Mental Capacity (Amendment) Act 2019 (c.18), s.6(3), Sch.2, para.3. 3 Words in s.35(4) substituted (1.4.2013) by Health and Social Care Act 2012 (c.7), s.306(4), Sch.5, para.134(b); SI 2013/160, art.2(2) (with arts 7–9). 4 Words in s.35(6)(b)(iii) substituted (2.4.2018) by The Regulation and Inspection of Social Care (Wales) Act 2016 (Consequential Amendments) Regulations 2018 (SI 2018/195), regs 2(1), 28. 5 S.35(6A)(6B) inserted (1.4.2013) by Health and Social Care Act 2012 (c.7), s.306(4), Sch.5 para.134(c); SI 2013/160, art.2(2) (with arts 7–9).

36 Functions of independent mental capacity advocates (1) (2)

(3)

The appropriate authority may make regulations as to the functions of independent mental capacity advocates. The regulations may, in particular, make provision requiring an advocate to take such steps as may be prescribed for the purpose of— (a) providing support to the person whom he has been instructed to represent[ (“P”) so that P1] [or support so that that person1] may participate as fully as possible in any relevant decision; (b) obtaining and evaluating relevant information; (c) ascertaining what [P’s wishes and feelings2] [the wishes and feelings of the person the advocate has been instructed to represent (“P”)2] would be likely to be, and the beliefs and values that would be likely to influence P, if he had capacity; (d) ascertaining what alternative courses of action are available in relation to P; [(da) in the case of an advocate instructed to support an appropriate person where paragraph 43 of Schedule AA1 applies, supporting that person to ascertain— (i) what the wishes and feelings of the cared-for person who that appropriate person represents and supports would be likely to be and the beliefs and values that would be likely to influence the cared-for person; (ii) what alternative courses of action are available in relation to the cared-for person who that appropriate person represents and supports;3] (e) obtaining a further medical opinion where treatment is proposed and the advocate thinks that one should be obtained. The regulations may also make provision as to circumstances in which the advocate may challenge, or provide assistance for the purpose of challenging, any relevant decision.

1 Words in s.36(2)(a) substituted (16.5.2019 for specified purposes) by Mental Capacity (Amendment) Act 2019 (c.18), s.6(3), Sch.2, para.4(2). 2 Words in s.36(2)(c) substituted (16.5.2019 for specified purposes) by Mental Capacity (Amendment) Act 2019 (c.18), s.6(3), Sch.2, para.4(3). 3 S.36(2)(da) inserted (16.5.2019 for specified purposes) by Mental Capacity (Amendment) Act 2019 (c.18), s.6(3), Sch.2, para.4(4).

717

Appendix 1

37 Provision of serious medical treatment by NHS body (1)

This section applies if an NHS body— (a) is proposing to provide, or secure the provision of, serious medical treatment for a person (‘P’) who lacks capacity to consent to the treatment, and (b) is satisfied that there is no person, other than one engaged in providing care or treatment for P in a professional capacity or for remuneration, whom it would be appropriate to consult in determining what would be in P’s best interests. (2) But this section does not apply if P’s treatment is regulated by Part 4 [or 4A1] of the Mental Health Act. (3) Before the treatment is provided, the NHS body must instruct an independent mental capacity advocate to represent P. (4) If the treatment needs to be provided as a matter of urgency, it may be provided even though the NHS body has not been able to comply with subsection (3). (5) The NHS body must, in providing or securing the provision of treatment for P, take into account any information given, or submissions made, by the independent mental capacity advocate. (6) ‘Serious medical treatment’ means treatment which involves providing, withholding or withdrawing treatment of a kind prescribed by regulations made by the appropriate authority. (7) ‘NHS body’ has such meaning as may be prescribed by regulations made for the purposes of this section by— (a) the Secretary of State, in relation to bodies in England, or (b) the National Assembly for Wales, in relation to bodies in Wales. 1 Words in s.37(2) inserted (3.11.2008) by Mental Health Act 2007 (c. 12), ss.35(6), 56; SI 2008/1900, art.2(k) (with art.3, Sch.).

38 Provision of accommodation by NHS body (1)

This section applies if an NHS body proposes to make arrangements— (a) for the provision of accommodation in a hospital or care home for a person (‘P’) who lacks capacity to agree to the arrangements, or (b) for a change in P’s accommodation to another hospital or care home, and is satisfied that there is no person, other than one engaged in providing care or treatment for P in a professional capacity or for remuneration, whom it would be appropriate for it to consult in determining what would be in P’s best interests. (2) But this section does not apply if P is accommodated as a result of an obligation imposed on him under the Mental Health Act. (2A) [And this section does not apply if— (a) an independent mental capacity advocate must be appointed under section 39A or 39C (whether or not by the NHS body) to represent P, and (b) the hospital or care home in which P is to be accommodated under the arrangements referred to in this section is the relevant hospital or care home under the authorisation referred to in that section.1] 718

Appendix 1

[And this section does not apply if— (a) an independent mental capacity advocate is appointed under paragraph 42 of Schedule AA1 to represent and support P, and (b) the arrangements which are authorised or proposed under Schedule AA1 in respect of P include arrangements for P to be accommodated in the hospital or care home referred to in this section.1] (3) Before making the arrangements [mentioned in subsection (1)2], the NHS body must instruct an independent mental capacity advocate to represent P unless it is satisfied that— (a) the accommodation is likely to be provided for a continuous period which is less than the applicable period, or (b) the arrangements need to be made as a matter of urgency. (4) If the NHS body— (a) did not instruct an independent mental capacity advocate to represent P before making the arrangements because it was satisfied that subsection (3)(a) or (b) applied, but (b) subsequently has reason to believe that the accommodation is likely to be provided for a continuous period— (i) beginning with the day on which accommodation was first provided in accordance with the arrangements, and (ii) ending on or after the expiry of the applicable period, it must instruct an independent mental capacity advocate to represent P. (5) The NHS body must, in deciding what arrangements to make for P, take into account any information given, or submissions made, by the independent mental capacity advocate. [(6) “Care home” means— (a) a care home in England within the meaning given in section 3 of the Care Standards Act 2000 (c. 14), and (b) a place in Wales at which a care home service within the meaning of Part 1 of the Regulation and Inspection of Social Care (Wales) Act 2016 is provided wholly or mainly to persons aged 18 or over.3] [(7) “Hospital” means— (a) in relation to England, a hospital as defined by section 275 of the National Health Service Act 2006; and (b) in relation to Wales, a health service hospital as defined by section 206 of the National Health Service (Wales) Act 2006 or an independent hospital as defined by section 2 of the Care Standards Act 2000.4] (8) ‘NHS body’ has such meaning as may be prescribed by regulations made for the purposes of this section by— (a) the Secretary of State, in relation to bodies in England, or (b) the National Assembly for Wales, in relation to bodies in Wales. (9) ‘Applicable period’ means— (a) in relation to accommodation in a hospital, 28 days, and (b) in relation to accommodation in a care home, 8 weeks. (10) [For the purposes of subsection (1), a person appointed under Part 10 of Schedule A1 to be P’s representative is not, by virtue of that appointment, engaged in providing care or treatment for P in a professional capacity or for remuneration.5] 719

Appendix 1 1 S.38(2A) substituted (16.5.2019 for specified purposes) by Mental Capacity (Amendment) Act 2019 (c.18), s.6(3), Sch.2, para.5(2). 2 Words in s.38(3) inserted (16.5.2019 for specified purposes) by Mental Capacity (Amendment) Act 2019 (c.18), s.6(3), Sch.2, para.5(3). 3 S.38(6) substituted (2.4.2018) by The Regulation and Inspection of Social Care (Wales) Act 2016 (Consequential Amendments) Regulations 2018 (SI 2018/195), regs 2(1), 9. 4 S.38(7) substituted (1.10.2010) by The Health and Social Care Act 2008 (Consequential Amendments No.2) Order 2010 (SI 2010/813), art.17(3). 5 S.38(10) omitted (16.5.2019 for specified purposes) by virtue of Mental Capacity (Amendment) Act 2019 (c.18), s.6(3), Sch.2, para.5(4).

PART 2 THE COURT OF PROTECTION AND THE PUBLIC GUARDIAN Supplementary powers 48 Interim orders and directions (1)

The court may, pending the determination of an application to it in relation to a person (‘P’), make an order or give directions in respect of any matter if (a) there is reason to believe that P lacks capacity in relation to the matter, (b) the matter is one to which its powers under this Act extend, and (c) it is in P’s best interests to make the order, or give the directions, without delay.

49 Power to call for reports (1) (2) (3)

(4) (5) (6) (7)

This section applies where, in proceedings brought in respect of a person (‘P’) under Part 1, the court is considering a question relating to P. The court may require a report to be made to it by the Public Guardian or by a Court of Protection Visitor. The court may require a local authority, or an NHS body, to arrange for a report to be made— (a) by one of its officers or employees, or (b) by such other person (other than the Public Guardian or a Court of Protection Visitor) as the authority, or the NHS body, considers appropriate. The report must deal with such matters relating to P as the court may direct. Court of Protection Rules may specify matters which, unless the court directs otherwise, must also be dealt with in the report. The report may be made in writing or orally, as the court may direct. In complying with a requirement, the Public Guardian or a Court of Protection Visitor may, at all reasonable times, examine and take copies of— (a) any health record, (b) any record of, or held by, a local authority and compiled in connection with a social services function, and 720

Appendix 1 (c) any record held by a person registered under Part 2 of the Care Standards Act 2000 (c 14) [, Chapter 2 of Part 1 of the Health and Social Care Act 2008 or Part 1 of the Regulation and Inspection of Social Care (Wales) Act 20161], so far as the record relates to P. (8) If the Public Guardian or a Court of Protection Visitor is making a visit in the course of complying with a requirement, he may interview P in private. (9) If a Court of Protection Visitor who is a Special Visitor is making a visit in the course of complying with a requirement, he may if the court so directs carry out in private a medical, psychiatric or psychological examination of P’s capacity and condition. (10) ‘NHS body’ has the meaning given in section 148 of the Health and Social Care (Community Health and Standards) Act 2003 (c 43). (11) ‘Requirement’ means a requirement imposed under subsection (2) or (3). 1 Words in s.49(7)(c) substituted (2.4.2018) by The Regulation and Inspection of Social Care (Wales) Act 2016 (Consequential Amendments) Regulations 2018 (SI 2018/195), regs 2(1), 30.

721

Appendix 2

Consent form 1 (sample) Patient agreement to investigation or treatment Patient details (or pre-printed label) Patient’s surname/family name ………………………………………………… Patient’s first name ……………………………………………………………. Date of birth ……………………………………………………………………. NHS number (or other identifier) ……………………………………………….  Male /  Female Special requirements ………………………………………………………… (eg other language/other communication method) Responsible Health Professional …………………………………………… …. Job title ……………………………………………………………………… To be retained in patient’s notes Patient identifier/label Name of proposed procedure or course of treatment (include brief explanation if medical term is not clear) …………………………………………………… ………………………………………………………………………………. ………………………………………………………………………………… ………………………………………………………………………………… Statement of health professional (to be filled in by health professional with appropriate knowledge of proposed procedure, as specified in consent policy). I have explained the procedure to the patient. In particular, I have explained: The intended benefits: ………………………………………………………………………………… Significant, unavoidable or frequently occurring risks: ………………………………………………………………………………… ………………………………………………………………………………… Any extra procedures which may become necessary during the procedure:  Blood transfusion: …………………………………………………………………………………  Other procedure (please specify): ………………………………………………………………………………… ………………………………………………………………………………… 722

Appendix 2 I have also discussed what the procedure is likely to involve, the benefits and risks of any available alternative treatment (including no treatment) and any particular concerns of patient.  The following leaflet/tape has been provided: ………………………………………………………………………………… This procedure will involve:  General and/or regional anaesthesia /  Local anaesthesia /  Sedation Signed: ………………………………………… Date ………………………. Name (PRINT) ………………………………………………………………… Job title ………………………………………………………………………… Contact details (if patient wishes to discuss options later) …………………………………………………………………………………. Statement of interpreter (where appropriate) I have interpreted the information above to the patient to the best of my ability and in a way in which I believe s/he can understand. Signed: ………………………………………… Date ………………………. Name (PRINT) ………………………………………………………………… Top copy accepted by patient: Yes / No (please circle) Patient identifier/label   

Statement of patient

Please read this form carefully. If your treatment has been planned in advance, you should already have your own copy of page 2 which describes the benefits and risks of the proposed treatment. If not, you will be offered a copy now. If you have any further questions, do ask – we are here to help you. You have the right to change your mind at any time, including after you have signed this form. I agree to the procedure or course of treatment described on this form. I understand that you cannot give me a guarantee that a particular person will perform the procedure. The person will, however, have appropriate experience. I understand that I will have the opportunity to discuss the details of anaesthesia with an anaesthetist before the procedure, unless the urgency of my situation prevents this. (This only applies to patients having general or regional anaesthesia.) I understand that any procedure in addition to those described on this form will only be carried out if it is necessary to save my life or to prevent serious harm to my health. I have been told about additional procedures which may become necessary during my treatment. I have listed below any procedures which I do not wish to be carried out without further discussion. Patient’s signature ………………………………………… Date ……………. Name (PRINT) ………………………………………………………………. 723

Appendix 2 A witness should sign below if the patient is unable to sign but has indicated his or her consent. Young people/children may also like a parent to sign here (see notes). Signature …………………………………………… Date …………………. Name (PRINT) ………………………………………………………………. Confirmation of consent (to be completed by a health professional when the patient is admitted for the procedure, if the patient has signed the form in advance) On behalf of the team treating the patient, I have confirmed with the patient that s/he has no further questions and wishes the procedure to go ahead. Signed …………………………………………… Date ……………………. Name (PRINT) ………………………………………………………………. Job Title ………………………………………………………………………. Important notes: (tick if applicable)  See also advance directive/living will (eg Jehovah’s Witness form)  Patient has withdrawn consent (ask patient to sign/date here) ………………………………………………………………………………….

Guidance to health professionals (to be read in conjunction with consent policy) What is a consent form for? This form documents the patient’s agreement to go ahead with the investigation or treatment you have proposed. It is not a legal waiver – if patients, for example, do not receive enough information on which to base their decision, then the consent may not be valid, even though the form has been signed. Patients are also entitled to change their mind after signing the form, if they retain capacity to do so. The form should act as an aide-memoire to health professionals and patients, by providing a checklist of the kind of information patients should be offered, and by enabling the patient to have a written record of the main points discussed. In no way, however, should the written information provided for the patient be regarded as a substitute for face-to-face discussions with the patient.

The law on consent See the Department of Health’s Reference guide to consent for examination or treatment for a comprehensive summary of the law (also available at www. gov.uk/government/uploads/system/uploads/attachment_data/file/138296/ dh_103653__1_pdf).

Who can give consent? Everyone aged 16 or more is presumed to be competent for themselves, unless the opposite is demonstrated. If a child under the age of 16 has ‘sufficient 724

Appendix 2 understanding and intelligence to enable him or her to understand fully what is proposed’, then he or she will be competent to give consent for himself or herself. Young people aged 16 and 17, and legally ‘competent’ younger children, may therefore sign this form for themselves, but may like a parent to countersign as well. If the child is not able to give consent for himself or herself, someone with parental responsibility may do so on their behalf and a separate form is available for this purpose. Even where a child is able to give consent for himself or herself, you should always involve those with parental responsibility in the child’s care, unless the child specifically asks you not to do so. If a patient is mentally competent to give consent but is physically unable to sign a form, you should complete this form as usual, and ask an independent witness to confirm that the patient has given consent orally or non-verbally.

When NOT to use this form. If the patient is 19 or over and lacks the capacity to give consent, you should use Consent Form 4 (form for adults who lack the capacity to consent to investigation or treatment) instead of this form. A patient lacks capacity if they have an impairment of the mind or brain or disturbance affecting the way their mind or brain works and they cannot: ●● ●● ●● ●●

Understand information about the decision to be made Retain that information in their mind Use or weigh that information as part of the decision-making process, or Communicate their decision (by talking, using sign language or any other means)

You should always take all reasonable steps (for example involving more specialist colleagues) to support a patient in making their own decisions, before concluding that they are unable to do so. Relatives cannot be asked to sign a form on behalf of an adult who lacks capacity to consent for themselves, unless they have been given the authority to do so under a Lasting Power of Attorney or as a court appointed deputy

Information Information about what the treatment will involve, its benefits and risks (including side-effects and complications) and the alternatives to the particular procedure proposed, is crucial for patients when making up their minds. The courts have stated that patients should be told about ‘significant risks which would affect the judgement of a reasonable patient’. ‘Significant’ has not been legally defined, but the GMC requires doctors to tell patients about ‘significant, unavoidable or frequently occurring’ risks. In addition if patients make clear they have particular concerns about certain kinds of risk, you should make sure they are informed about these risks, even if they are very small or rare. You should always answer questions honestly. Sometimes, patients may make it clear that they do not want to have any information about the options, but want you to decide on their behalf. In such circumstances, you should do your best to ensure that the patient receives at least very basic information about what is proposed. Where information is refused, you should document this on page […] of the form or in the patient’s notes. 725

(B) Assessment commissioned by supervisory body. IMCA instructed for anyone without representation

Age assessment Mental health assessment

726

Authorisation expires and managing authority requests further authorisation

Mental capacity assessment

Best interests assessment

Any assessment says no

(C) Request for authorisation declined

No refusals assessment Eligibility assessment

All assessments support authorisation

(D) Best interests assessor recommends period for which deprivation of liberty should be authorised

(F) Authorisation is granted and person’s representative appointed

(E) Best interests assessor recommends person to be appointed as representative Person or their representative appeals to Court of Protection which has powers to terminate authorisation or vary conditions

(G) Authorisation implemented by managing authority

Briefing sheet – Deprivation of Libery Safeguards – November 2007 Gateway reference: 8965

In an emergency hospital or care home can issue an urgent authorisation for seven days while obtaining authorisation

Person or their representative requests review

Managing authority requests review because circumstances change

(H) Review

Appendix 3

(A) Hospital or care home managers identify those at risk of deprivation of liberty and request authorisation from supervisory body

Overview of current deprivation of liberty safeguards

Overview of Deprivation of Liberty Safeguards

Appendix 4

Applications Relating to Medical Treatment: Guidance authorised by the Honourable Mr Justice Hayden, the Vice President of the Court of Protection [2020] EWCOP 2 17 January 2020

Applications to which this practice guidance applies 1.

2. 3.

4.

5.

1

This practice guidance sets out the procedure to be followed where a decision relating to medical treatment arises and where thought requires to be given to bringing an application before the Court of Protection. The procedure is currently being reviewed within the revised MCA Code. That will, in due course, be subject to public consultation and Parliamentary scrutiny. This guidance is intended to operate until such time as it is superseded by the revised Code. It is emphasised that this document is intended to be by way of guidance only. The practice guidance is directed to those acting for providers and commissioners of clinical and caring services. As set out below, the expectation is that such providers/commissioners should be responsible for bringing any application that is required. The starting point for the making of medical treatment decisions in relation to those lacking decision-making capacity is Section 5 Mental Capacity Act 2005. This provides a defence against liability for the medical professional(s) carrying out the relevant act (including, where relevant, withholding or withdrawing treatment) where they reasonably believe that the person in question lacks the necessary decision-making capacity and that the act in question is in the person’s best interests. The fact that certain medical treatments are defined as ‘serious’1 does not determine whether they should be subject to an application to the Court of Protection. Rather they indicate the need for special care and attention to the decision-making process surrounding them, including the appointment of an Independent Mental Capacity Advocate in appropriate circumstances.

For purposes of section 37 Mental Capacity Act 2005 See the MCA 2005 (Independent Mental Capacity Advocates) (General) Regulations 2006, SI 2006/1832, regulation 4.

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Appendix 4 6.

7.

If the provisions of the Mental Capacity Act 2005 are followed, any relevant professional guidance observed2 and relevant guidance in the Code of Practice followed,3 including as to the undertaking of the decision-making process, then, if there is agreement at the end of the decision-making process as to: a. the decision-making capacity of; and b. best interests of the person in question, then, in principle, medical treatment may be provided to, withdrawn from or withheld in accordance with the agreement, without application to the court, in reliance upon the defence in section 5.4 Paragraphs 8–13 below set out the circumstances in which section 5 either will not or may not provide a defence. If section 5 does not provide a defence, then an application to the Court of Protection will be required.

Situations where consideration should be given to bringing an application to court 8.

9.

10.

If, at the conclusion of the medical decision-making process, there remain concerns that the way forward in any case is: (a) finely balanced, or (b) there is a difference of medical opinion, or (c) a lack of agreement as to a proposed course of action from those with an interest in the person’s welfare, or (d) there is a potential conflict of interest on the part of those involved in the decision-making process (not an exhaustive list) Then it is highly probable that an application to the Court of Protection is appropriate. In such an event consideration must always be given as to whether an application to the Court of Protection is required. Where any of the matters at paragraph 8 above arise and the decision relates to the provision of life-sustaining treatment an application to the Court of Protection must be made. This is to be regarded as an inalienable facet of the individual’s rights, guaranteed by the European Convention on Human Rights (‘ECHR’). For the avoidance of any doubt, this specifically includes the withdrawal or withholding of clinically assisted nutrition and hydration. In any case which is not about the provision of life-sustaining treatment, but involves the serious interference with the person’s rights under the ECHR, it is “highly probable that, in most, if not all, cases, professionals faced with a decision whether to take that step will conclude that it is appropriate to apply to the court to facilitate a comprehensive analysis

2 In the case of decisions concerning clinically assisted nutrition and hydration, treating clinicians are directed to the BMA/RCP Guidance (endorsed by the GMC): ‘Clinically assisted nutrition and hydration (CANH) and adults who lack the capacity to consent,’ available at www.bma.org.uk/canh. 3 Note, the Code of Practice must be read together with any subsequent case-law; the Code of Practice is also under review as at January 2020. 4 NHS Trust v Y [2018] UKSC 46 at paragraph 126.

728

Appendix 4

11.

12.

13.

of [capacity and] best interests, with [the person] having the benefit of legal representation and independent expert advice.”5 This will be so even where there is agreement between all those with an interest in the person’s welfare. Examples of cases which may fall into paragraph 10 above will include, but are not limited to: a. where a medical procedure or treatment is for the primary purpose of sterilisation; b. where a medical procedure is proposed to be performed on a person who lacks capacity to consent to it, where the procedure is for the purpose of a donation of an organ, bone marrow, stem cells, tissue or bodily fluid to another person; c. a procedure for the covert insertion of a contraceptive device or other means of contraception; d. where it is proposed that an experimental or innovative treatment to be carried out; e. a case involving a significant ethical question in an untested or controversial area of medicine. Separately to the matters set out above, an application to court may also be required where the proposed procedure or treatment is to be carried out using a degree of force to restrain the person concerned and the restraint may go beyond the parameters set out in sections 5 and 6 Mental Capacity Act 2005. In such a case, the restraint will amount to a deprivation of the person’s liberty and thus constitute a deprivation of liberty.6 The authority of the court will be required to make this deprivation of liberty lawful. It requires to be stated clearly that those providing or commissioning clinical and caring services should approach the Court of Protection in any case in which they assess it as right to do so.

Pre-issue steps 14.

15.

5 6

An application relating to medical treatment falls within the Personal Welfare Pathway. The pre-issue stage of the Personal Welfare Pathway (Practice Direction 3B) should be followed. It is important: a. to consider whether steps can be taken to resolve the relevant issues without the need for proceedings; but b. to recognise that delay will invariably be inimical to P’s welfare and where resolution cannot be achieved within P’s own timescales proceedings should be issued. Lawyers at the Official Solicitor’s office are available to discuss applications in relation to medical treatment before an application is made. They should be given as much notice as possible of any application. Any enquiries about adult medical and welfare cases should be addressed to a lawyer in the healthcare and welfare team at the Office of the Official Solicitor, Victory House, 30 to 34 Kingsway,

Re P (Sexual Relations and Contraception) [2018] EWCOP 10 at paragraph 56, concerning the covert insertion of a contraceptive device. ACCG v MN [2017] UKSC 22 at paragraph 38.

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Appendix 4 London WC2B 6EX, [Post Point 0.53, 102 Petty France, London, SW1H 9AJ6A] telephone 020 3681 2751, email: [email protected]. uk. In urgent cases please phone to alert a lawyer in the healthcare and welfare team and do not rely solely on email communication as this may not receive immediate attention. 16. The Official Solicitor’s office is not able to offer an ‘out of hours’ service, which means that the Official Solicitor can only participate in hearings that are either (1) listed or (2) made on short notice to the applications judge during court hours. Accordingly, applications to the ‘out of hours’ Judge should be regarded as exceptional.

Parties to proceedings 17.

The person bringing the application will always be a party to proceedings, as will a respondent named in the application form who files an acknowledgment of service.7 In cases involving issues as to medical treatment, the organisation which is, or will be, responsible for commissioning or providing clinical or caring services to P should normally (although not always) be the applicant. If the organisation is not the applicant, it should normally be named as a respondent in the application form. The expectation in applications relating to medical treatment is that P would normally be joined as a party. It is therefore important that the applicant provides as fully as possible details (including contact details) for members of P’s family and others with an interest in P’s welfare.

(Practice Direction B accompanying Part 9 sets out the persons who are to be notified that an application form has been issued.) 18.

The court will consider whether anyone not already a party should be joined as a party to the proceedings. Other persons with sufficient interest may apply to be joined as parties to the proceedings8 and the court has a duty to identify at as early a stage as possible who the parties to the proceedings should be.9

Allocation of the case 19.

6A 7 8 9 10 11

Where a decision has been made to pursue an application to the court in relation to a serious medical treatment decision or in respect of a case involving an ethical dilemma, in an untested area, the proceedings (including permission, the giving of any directions, and any hearing) must be conducted by a Tier 3 judge,10 unless the Senior Judge or a Tier 3 judge determines to the contrary.11

Updated address supplied in brackets. Rule 9.13 of the Court of Protection Rules 2017. Rule 9.15 of the Court of Protection Rules 2017. Rule 1.3(3)(e)(ii). Practice Direction 3A, paragraph 2(a). Practice Direction 2A defines tiers of judge. Practice Direction 3A, paragraph 3.

730

Appendix 4 20.

In any other case, the expectation is that the court, on making case management directions, on issue, will in gatekeeping under paragraph 2.4(1)(a) of Practice Direction 3B have regard, in particular, to: a. The seriousness of the consequences for P of the proposed treatment decision(s); b. The seriousness of the interference with the ECHR rights of P involved the proposed treatment decision(s).

Matters to be considered at the first directions hearing 21.

22.

Unless the matter is one which needs to be addressed immediately, at the case management directions upon issue stage the court will list it for a Case Management Conference within 28 days as per paragraph 2.4(1) of Practice Direction 3B. The court at the case management directions upon issue stage will further consider whether it is possible to join P as a party and whether the Official Solicitor should be invited to act as their litigation friend. It should be noted that: a. the expectation in applications for medical treatment is that P will normally be joined as a party; b. When P is joined as a party to the application, the Official Solicitor will usually consent to act if invited to so by the court. There is no need for confirmation that there is no other person willing or able to act as litigation friend. The Official Solicitor will therefore normally be invited to act as litigation friend, and the standard practice is that the organisation which is, or will be, responsible for providing clinical or caring services to P will meet half of the costs incurred by the Official Solicitor (as P’s solicitor). In urgent cases the issue of P’s representation should be resolved as quickly as possible to ensure that those acting for P can quickly take the necessary steps to investigate the case and secure the best possible evidence in the available time scale. At the Case Management Conference, the court will consider the matters set out at paragraph 2.5 of Practice Direction 3B. It will also consider how the press should be notified of the application, and whether such notification should be accompanied by an agreed statement of facts and issues.

Urgent hearings 23. 24.

Practice Direction 10B sets out the general procedure to be followed for urgent applications. In urgent hearings in medical treatment cases, the following steps should be taken: a. proper arrangements should be made for family members to be able to participate in the hearing; b. the Official Solicitor’s office should be alerted so that (if possible) he is in a position to respond promptly. It is to be emphasised, as set out at paragraph 16 above, the Official 731

Appendix 4

25.

Solicitor does not offer an ‘out of hours’ service. The Official Solicitor is prepared in principle to attend very urgent hearings as prospective litigation friend where the caring organisation agrees to pay half of his costs but ideally the Court should be asked to make an urgent order in respect of P’s representation if time permits; c. the Urgent Applications Judge and the Clerk of the Rules are to be alerted at the earliest opportunity that an application is likely; d. a Word version of any draft order should be made available; e. any statements in support of an application relating to lifesustaining treatment must set out the salient details of the relevant medical history which precedes the application and an assessment of any material which illuminates P’s quality of life; f. any IMCA or advocate report(s) relating to the treatment decision which are in existence should be filed; g. Usually, and particularly if written evidence is limited or incomplete, one or more treating clinician should attend in person to provide evidence for the court. If such is not possible attendance may be permitted by telephone, or by video link, to provide evidence for the court. In an urgent hearing, the court will take every opportunity it can to ensure that P is represented before granting substantive relief. Only in a truly exceptional case would the court grant substantive relief without representation. The court will otherwise only grant such interim relief as is urgently required to secure P’s interests, and the following steps should then be taken: a. The case should then be listed, avoiding delay, at the earliest opportunity to permit full consideration of the evidence and representations on behalf of P; b. The represented applicant’s advocate/legal representative should prepare a note of the hearing as soon as is reasonably practicable afterwards, and file a copy of the note with the court and serve a copy upon (a) the Official Solicitor or any other litigation friend appointed to act for P and (b) any respondent who was not present at the hearing.

Orders 26.

In every case, in addition to any declaration made under section 15(1)(a) Mental Capacity Act 2005, the court will consider whether the relief sought should be granted in the form of a declaration of lawfulness under section 15(1)(c) and/or a decision under section 16(2)(a). In so doing, the court will have regard to the statutory purpose of section 16(2)(a) as being to empower the court to make a decision on behalf of P in relation to a matter in respect of which P lacks capacity.

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Appendix 5

Practice Note The Official Solicitor to the Senior Courts: Appointment as Litigation Friend in Personal Welfare Proceedings in the Court of Protection (including Serious Medical Treatment Cases) and Appointment as Advocate to the Court 3 February 2021

Introduction 1.

2.

3.

1

This Practice Note concerns: a. the appointment of the Official Solicitor as litigation friend of the person concerned (“P”) specifically in personal welfare proceedings in the Court of Protection including applications issued under s21A Mental Capacity Act 2005; b. the appointment of the Official Solicitor as litigation friend of the person concerned (“P”) specifically in serious medical treatment proceedings in the Court of Protection; c. the appointment of the Official Solicitor as litigation friend of a protected party in proceedings in the Court of Protection; d. requests by the court to the Official Solicitor to act as, or appoint counsel to act as, an advocate to the court; e. requests by the court to the Official Solicitor to conduct Harbin v Masterman1 enquiries. The Official Solicitor is frequently invited to act as litigation friend for P in personal welfare proceedings in the Court of Protection, including s21A applications and cases that involve serious medical treatment. Typically, the issues involved may include capacity and best interests regarding: a. residence; b. care; c. contact; d. consent to sexual relations; e. consent to marriage; f. consent to serious medical treatment; g. challenges to authorisations granted under the Deprivation of Liberty Safeguards. The Official Solicitor is also invited to act as litigation friend on behalf of a protected party in such proceedings. A protected party is a party or intended party (other than P or a child) who lacks capacity to conduct the proceedings. [1896] 1 Ch 351.

733

Appendix 5 4. 5. 6.

7.

This Practice Note is intended to be helpful guidance, but it is always subject to legislation including the Rules of the Court, to Practice Directions and to case law. In this Practice Note “MCA 2005” means the Mental Capacity Act 2005, “CoPR 2017” means the Court of Protection Rules 2017 and “CPR” means the Civil Procedure Rules 1998. In so far as it is relevant to this Practice Note, “P” means any person who lacks or, so far as consistent with the context, is alleged to lack capacity to make a decision or decisions in relation to any matter that is the subject of an application to the court (under Rule 2.1 of CoPR 2017). The Official Solicitor is also sometimes invited to act as Advocate to the Court. A court may seek the assistance of an Advocate to the Court when there is a danger of an important and difficult point of law being decided without the court hearing relevant argument. The Advocate to the Court’s function is to give to the court such assistance as they are able on the relevant law and its application to the facts of the case. An Advocate to the Court does not represent any party. Further information about the role of Advocate to the Court is set out in Practice Direction 3G to the CPR.2 Guidance as to the procedure when the court is inviting the Official Solicitor to act as Advocate to the Court is set out below.

Appointment of a litigation friend of P 8. 9.

10.

Under CoPR 2017 rule 1.2, in every case the court must consider the participation of P, including whether P should be joined as a party to the proceedings. Where P is to be joined as a party to proceedings in the Court of Protection and lacks capacity to conduct those proceedings, the order joining P as a party will take effect only upon the appointment of a litigation friend or (in welfare proceedings) an accredited legal representative, in accordance with Rule 1.2 CoPR 2017. Rule 17.4(1) CoPR 2017 provides that the court may appoint the Official Solicitor or some other person as litigation friend for P.

The role of a litigation friend 11.

The basis for the appointment of a litigation friend in the Court of Protection and the duties of a litigation friend are contained in Part 17 of the CoPR 2017 and in Practice Direction 17A thereto.3

2 Which draws on the Attorney-General’s Memorandum of 19 December 2001: “Requests for the appointment of an advocate to the court” [2002] Fam Law 229. 3 As to the role of a litigation friend, Sir Robert Megarry V-C stated in Re E (mental health patient) [1984] 1 All ER 309 at pages 312-3 “The main function of a [litigation] friend appears to be to carry on the litigation on behalf of the plaintiff and in his best interests. For this purpose the [litigation] friend must make all the decisions that the plaintiff would have made, had he been able … the [litigation] friend … is responsible to the court for the propriety and the progress of the proceedings. The [litigation] friend does not, however, become a litigant himself …” For additional guidance on the role and duties of a litigation friend in the specific context of the Court of Protection proceedings see the judgment of Charles J in NRA & Ors

734

Appendix 5

The Official Solicitor’s criteria for consenting to act as litigation friend 12.

13.

4

No person, including the Official Solicitor, can be appointed to act as litigation friend without his/her consent.4 The Official Solicitor’s criteria for consenting to act as litigation friend for P (save for serious medical treatment cases) are: a. There is evidence or reason to believe that P lacks capacity to conduct the legal proceedings. b. The Official Solicitor is invited to act as litigation friend by court order. c. The Official Solicitor is litigation friend of last resort i.e. there is no other person that is suitable to act because they cannot fairly and competently conduct proceedings on behalf of P or a protected party, or they have an interest that is adverse to P or the protected party. d. There is security for the costs of legal representation of P which the Official Solicitor considers satisfactory, which will cover the costs of external solicitors retained on P’s behalf. The Official Solicitor does not charge for acting a litigation friend. The Official Solicitor will need to be satisfied that the costs of retaining solicitors to act for P can be settled as and when they fall due, taking into account that there may be other calls on P’s funds. This requirement can normally be satisfied by either: i. The issuing of a legal aid certificate by the Legal Aid Agency where P or the protected party is eligible for legal aid; ii. Evidence that P has liquid funds that the Official Solicitor considers adequate in all the circumstances; iii. An undertaking to settle the Official Solicitor’s costs as and when they fall due, in a form which the Official Solicitor considers satisfactory and covering an amount of costs that the Official Solicitor considers adequate; or iv. The Official Solicitor receiving from the applicant (or another appropriate party) a sum of money on account of her costs which the Official Solicitor considers adequate. If, at any time after consenting to act, the Official Solicitor is no longer satisfied that there is adequate security for her costs, the Official Solicitor will apply for her appointment as litigation friend to be brought to an end.

WLR(D) 394, [2015] EWCOP 59 at paragraphs 127 to 175 and in particular 144 and 145 which confirm that “the litigation friend is not obliged to advance any argument that P wants him to and that it would not be in P’s best interests to advance an unarguable case” and “by applying the best interests test the litigation friend……….may have to take a position that is contrary to, or does not fully accord with, the expressed wishes and feelings of a P”. Rule 17.4(2)(b) CoPR 2017.

735

Appendix 5

The Official Solicitor’s criteria for consenting to act as litigation friend in serious medical treatment cases 14. 15.

16.

The Official Solicitor does not apply her criteria that she must be litigation friend of last resort in serious medical treatment cases. As a general rule the Official Solicitor conducts cases relating to serious medical treatment herself, with the assistance of the lawyers employed in her office, and does not retain external solicitors to act for P. She does not charge for acting as P’s litigation friend, but time spent by lawyers employed by the Official Solicitor will be charged for in the usual manner. The Official Solicitor will seek to have 50% of her reasonable costs (including any costs incurred before the application is formally issued and also those which may arise from any subsequent appeal or applications to review orders which may be brought by any of the other parties) secured by way of an undertaking given by the appropriate public authority involved in the proceedings: in most instances this will be an NHS Trust or CCG which has brought the proceedings as the applicant but in cases where the applicant is a private individual/s this may be one or more of the public bodies acting as respondent. The other 50% of her costs are met from the Official Solicitor’s budget. The Official Solicitor does not seek to recover costs from P’s own funds for acting in cases concerning serious medical treatment. In cases relating to serious medical treatment in which it is envisaged that she will be appointed to act as litigation friend for P, the Official Solicitor will accept service of documents on P’s behalf before proceedings have been issued, subject to paragraph 15 above.

Invitation to the Official Solicitor to act as litigation friend 17. 18.

In personal welfare proceedings before the Court of Protection, the Official Solicitor is invited to act as litigation friend by way of an order of the court. An order inviting the Official Solicitor to act as litigation friend should be expressed to be subject to her consent.

Where the Official Solicitor has been appointed as litigation friend for P 19.

20.

Normally, where the Official Solicitor has been invited to act as litigation friend for P, the court will direct the applicant to serve a copy of the relevant papers on the Official Solicitor. Please ensure that this is done promptly to avoid unnecessary delay. The office operates a paperless policy and all papers should where possible be sent electronically, by email to [email protected] In addition, the court will normally make an order authorising the Official Solicitor to investigate the property and financial affairs of P for the purposes of ensuring that the costs of P’s representation are 736

Appendix 5

21. 22.

23.

secured in the proceedings. It is essential the Official Solicitor is served with a sealed copy of this order promptly to avoid any delays to the proceedings. Please also ensure that the application papers include all information and documents required under the relevant practice direction. When the matter has been allocated to a case manager the case manager will retain an external solicitor to act for P and the external solicitor will contact the applicant in due course. In serious medical treatment cases the lawyer in the Official Solicitor’s office to whom the case is allocated will make contact. The Official Solicitor retains external solicitors to represent P or the protected party in all personal welfare cases, with the exception of serious medical treatment cases, which are conducted by the lawyers employed in her office. Only once security for costs has been obtained will the Official Solicitor be in a position to retain external solicitors. This may mean obtaining relevant evidence of P’s or the protected party’s means for the purposes of securing legal aid. Those enquiries are made by the Official Solicitor’s pre-acceptance team. The team will use its best endeavours to avoid delays. Often, however, the progress of its enquiries is subject to the time taken to respond by the financial institutions or other parties it has been necessary to approach. If it appears that the necessary enquiries will not be completed in time for the Official Solicitor to accept the court’s invitation before the first listed hearing, the Official Solicitor will notify the applicant and the court of that fact.

Urgent medical treatment cases 24.

25.

In the case of an urgent serious medical treatment application, it may assist to contact the Official Solicitor’s office in early course to notify her staff of the urgent application and to discuss any pressing issues. In such a case, please send an email marked in the subject line “URGENT: for the attention of a healthcare and welfare lawyer” to the healthcare and welfare inbox [email protected] If an urgent serious medical treatment application is made to the urgent business judge out of hours then it will be a matter for that judge whether the involvement of the Official Solicitor is required and, if so required, the judge will take steps to ensure that contact is made with the Official Solicitor’s out of hours lawyers.

Invitations to the Official Solicitor to act as Advocate to the Court 26.

The Official Solicitor may be invited by the court to act or instruct counsel as Advocate to the Court if it appears to the court that such an invitation is more appropriately addressed to her rather than (or in addition to) to the Attorney-General. It is a matter for the Official Solicitor whether she accepts that invitation

737

Appendix 5 27.

28.

29.

The appointment of an Advocate to the Court is limited to cases where there is a danger of an important and difficult point of law being decided without the court hearing the relevant argument. As such the Official Solicitor’s role when acting as advocate to the court is to advance relevant contrary arguments or otherwise test the approach being contended for by the parties to the proceedings. The Official Solicitor will carefully consider funding availability and budgetary and other resource constraints before deciding whether to accept or decline such an invitation The Official Solicitor will give serious consideration to an offer of funding by a third party such as a public authority applicant, when she is asked to act as advocate to the court Where the court wishes to invite the Official Solicitor to act as Advocate to the Court in a personal welfare matter, the order containing the invitation should be sent to [email protected]

Advising the court: Harbin v Masterman enquiries and Advocate to the Court 30.

Where the Official Solicitor is invited, to conduct enquiries under Harbin v Masterman any such invitation is subject to her consent. If it appears to the Official Solicitor that any public body wishes to seek the assistance of the court but is unwilling to carry out the enquiries itself, the Official Solicitor may seek an undertaking from that public body to indemnify her in respect of his costs of carrying out those enquiries.

Contacting the Official Solicitor 31.

It may be helpful to discuss the question of appointment of the Official Solicitor as a litigation friend with one of her staff. Please email [email protected] in particular: (a) if in doubt about whether the Official Solicitor’s acceptance criteria are met, or (b) to alert the Official Solicitor to a case where you are applying for the matter to be expedited.

Address: Official Solicitor and Public Trustee Post point 0.53 102 Petty France Westminster London SW1H 9AJ DX 152384 Westminster 8 General enquiries email: [email protected] Email address for service of documents: [email protected] Phone number: 020 3681 2751 (operated from 9am to 5pm) Sarah Castle, Official Solicitor 3 February 2021 https://www.gov.uk/government/organisations/official-solicitor-and-publictrustee 738

Appendix 6

Court of Protection Guidance: FG (1) NHS Trust 1 (2) NHS Trust 2 v FG (By her litigation friend, the Official Solicitor) [2015] 1 WLR 1984, [2014] EWCOP 30 Guidance Introduction: 1

In this guidance the following terminology will be used: ‘P’

the pregnant woman who lacks, or may lack, the capacity to take decisions in relation to her antenatal, perinatal and postnatal care as a result of an impairment of, or a disturbance in, the functioning of her mind or brain resulting from her psychiatric illness;

‘obstetric care’

all care and treatment needs brought about by P’s pregnancy including antenatal care, management of labour and delivery, and postnatal care;

‘Mental Health Trust’ the NHS Trust responsible for P’s psychiatric care, whether in the community or in a psychiatric hospital; ‘psychiatric hospital’ any mental health unit at which P resides, whether detained pursuant to statutory powers or as a voluntary patient;

2

3

‘acute hospital’

a hospital other than the psychiatric hospital at which it is intended that P will receive obstetric care and deliver her child;

‘Acute Trust’

the NHS Trust responsible for the acute hospital;

‘Court’

either the Court of Protection or the Family Division of the High Court.

This Guidance applies in cases where a pregnant woman who lacks, or may lack, the capacity to make decisions about her obstetric care (see paragraph 1 above) resulting from a diagnosed psychiatric illness, falls within one of the four categories of cases set out in paragraph 3 below. An Acute Trust and/or Mental Health trust should make an application to seek orders in relation to P’s obstetric care to the Court of Protection or to the Family Division of the High Court if the case falls within any of the following four categories, namely where: Category 1 – the interventions proposed by the Trust(s) probably amount to serious medical treatment within the meaning of COP Practice Direction 9E, irrespective of whether it is contemplated that the obstetric treatment would otherwise be provided under the MCA or MHA; or Category 2 – there is a real risk that P will be subject to more than transient forcible restraint; or 739

Appendix 6

4

5

Category 3 – there is a serious dispute as to what obstetric care is in P’s best interests whether as between the clinicians caring for P, or between the clinicians and P and/or those whose views must be taken into account under s.4(7) of the MCA; or Category 4 – there is a real risk that P will suffer a deprivation of her liberty which, absent a Court order which has the effect of authorising it, would otherwise be unlawful (i.e. not authorised under s4B of or Schedule A1 to the MCA). In relation to category 1, it is recommended that the following categories of case should be the subject of an application to the court, namely: i delivery by caesarean section is proposed in circumstances where the merits of that proposal are finely balanced; or ii delivery by caesarean section is proposed and is likely to involve more than transient forcible restraint of P. It may be appropriate to make an application to the court in cases which do not fall within the categories set out in paragraph 3 above; it will depend on the facts of the case. If an application is so made, the provisions of this Guidance should be followed.

Assessment: 6

7

8 9 10

11

12 13

The early identification of an individual in respect of whom an application might have to be made is essential. In the case where P is detained under the provisions of the Mental Health Act 1983, the lead professional is likely to be a treating psychiatrist at the hospital where P is detained. In the case where P is living in the community the lead professional is likely to be a member of P’s midwifery team. Once P has been so identified, the Acute and Mental Health Trusts should liaise to assess P’s capacity to make decisions in respect of her obstetric care and to plan how and when such care is to be delivered in her best interests. An assessment of P’s capacity to litigate should be undertaken; this will usually be performed by P’s treating psychiatrist. Capacity may, of course, fluctuate and it is extremely important to keep the issue of capacity under regular review. Where there are concerns about P’s ability to care for her unborn child the Acute and/or Mental Health Trusts should notify the relevant social services department of P’s case if social workers are not already involved with her. The local authority should commence child protection procedures immediately upon receipt of a referral. Thereafter, there should be regular liaison and co-operation between the Acute Trust, the Mental Health Trust and the local authority. The Acute and Mental Health Trusts, together with the relevant local authority, should hold regular planning and review meetings (‘professionals meetings’). Those meetings should be minuted. Multiagency co-operation is likely to be an essential feature of the planning process to achieve the best outcome for P and her unborn child. An identified clinician from the Acute Trust or the Mental Health Trust should be appointed to chair the planning and review meetings. Part of the planning process should involve identifying whether and, if so, when a decision by the Court will be required to authorise obstetric care or any deprivation of liberty to facilitate its provision.

740

Appendix 6 14

15

16

17

The planning process should include consideration of an assessment of the risk of harm, if any, which P poses to herself, to her unborn child or to others. Where any professional considers such a risk exists that assessment must be recorded in writing and presented at the next professionals meeting. If as a result of the risk assessment the local authority proposes to make an application under the inherent jurisdiction for permission to withhold the care plan for the unborn child from P, the application should be made, save in the case of a genuine emergency, no later than 4 weeks before the expected date of delivery. (The threshold for the granting of such an application is high and applications will not be granted routinely). If an application is made by either the Trusts or by the local authority for permission not to notify P of the application(s) and it is thought appropriate to apply for a Reporting Restrictions Order, the applicant(s) must give full and proper notice to the print and broadcast media of the same. A decision by one agency to withhold information from any other agency must be recorded identifying the cogent reasons for the decision. The agency, from whom information is to be withheld, must be notified of the same at the earliest opportunity.

Application: 18

19

20

21

Where it is decided that P’s case falls within one of the four categories set out in paragraph 3 above or it is otherwise decided to make an application, an application should be made to the court at the earliest opportunity. Save in a case of genuine medical emergency, any application should be made no later than 4 weeks before the expected date of delivery. This time frame is required for the following reasons: i where P is assessed as lacking capacity to litigate, it will enable the Official Solicitor to undertake any necessary investigations; ii to ensure the final hearing is listed and heard at least a few days before the proposed interventions; and iii to enable a directions hearing to be held around 2 weeks before the final hearing. The court and the parties will then have the opportunity to ensure the court has all the relevant and necessary evidence at the final hearing. In compliance with the timetable set out above, the Trusts should in a timely manner, take the following steps: i issue the application ii notify the Official Solicitor of the application; iii disclose any evidence to the Official Solicitor which they consider appropriate; iv seek an urgent directions hearing, preferably around two weeks before the final hearing, at which disclosure and the scope of the evidence can be determined; v liaise with the Clerk of the Rules to list the substantive hearing at an early stage. It is important that the Trusts should seek early advice and input from their legal advisers.

741

Appendix 6 22

Late applications are to be avoided save in a case of genuine medical emergency. They have four very undesirable consequences: i the application is more likely to be dealt with by the out of hours judge and without a full hearing in public; ii the available written evidence is more likely to be incomplete and necessitate substantial oral evidence; iii it seriously undermines the role that the Official Solicitor can and should properly play in the proceedings; and iv it deprives the court of the opportunity to direct that further evidence, including independent expert evidence, if necessary, is obtained in relation to the issue of capacity or best interests.

This approach is dictated by P’s Article 5, 6 and 8 rights and best interests. 23

The following evidence should be filed and served in every application: (a) In the event that P is to be transferred from a psychiatric hospital to an acute hospital for her obstetric care, a care plan from the Mental Health Trust for that transfer, to include (i) when and, if not at a defined time, the circumstances in which P is to be transferred; (ii) the form of transport (ambulance, secure taxi etc.); (iii) which members of staff are to accompany P; (iv) an assessment of the prospects of P not co-operating with the transfer; (v) whether any specialist advice has been obtained in relation to the restraint of pregnant women and, if it has, the nature of that advice; (vi) the plans for any restraint that may be used to facilitate the transfer, including who is to undertake the restraint, at whose direction, and with a description of the techniques to be used; (vii) a clear description of what P’s status will be under the MHA during transfer and whilst at the acute hospital. (b) A care plan from the Acute Trust for P’s obstetric care, including: (i) the obstetric interventions and care that are proposed; (ii) what anaesthesia is planned, or may be required; (iii) when, where and by whom the interventions, care and anaesthesia are to be delivered; (iv) what further interventions may become necessary and in what circumstances. (c) A care plan from the Acute Trust relating to the issue of restraint at the acute hospital, including: (i) an assessment of the prospects of P not complying with the obstetric interventions and care that is proposed; (ii) in a stepwise and escalating fashion, a description of the measures and techniques to be used; (iii) who is to undertake the physical or chemical restraint; (iv) whether any specialist advice in relation to the restraint of pregnant women has been obtained and, if so, the nature of that advice.

742

Appendix 6 (d)

(e)

(f)

A witness statement from P’s responsible clinician (or to the extent that he/she cannot deal with the issues, from others) which: (i) contains an overview of P’s psychiatric history; (ii) details the liaison between the psychiatric and obstetric teams caring for P; (iii) includes a focused assessment of P’s capacity to consent to the obstetric treatment which is proposed; (iv) sets out the duration for which P’s lack of capacity is likely to persist despite any steps that can reasonably be taken to help her regain capacity; (v) contains an assessment of the prospects of P not cooperating with the obstetric care that is proposed and its alternatives; (vi) endorses the plan for transfer and any restraint during it; (vii) compares the impact upon her mental health of the proposed obstetric treatment and restraint and any alternatives; A witness statement from a consultant obstetrician (or to the extent that he/she cannot deal with the issues, from others) which: (i) contains an overview of P’s obstetric history so far as it is known; (ii) reviews the obstetric care already provided in the present pregnancy; (iii) details the liaison between the obstetric and psychiatric teams caring for P; (iv) explains what obstetric treatment and interventions are proposed; (v) identifies what alternative management strategies exist; (vi) deals with the anaesthesia which may be used and its risks/benefits; (vii) refers to the obstetric care plan; (viii) contains an assessment of the prospects of P not cooperating with the obstetric care that is proposed and its alternatives; (ix) endorses the care plan for restraint at the acute hospital; (x) compares the risks and benefits to P of the proposed obstetric treatment and interventions versus the alternatives and justification as to why the plan proposed is in P’s best interests; explains why the proposed obstetric treatment and interventions are in P’s best interests. Witness evidence, which may be contained in the witness statements from the consultant psychiatrist and obstetrician, which: (i) sets out, insofar as they are able, P’s past and present wishes and feelings and beliefs and values in relation to (1) the pregnancy; (2) obstetric care, including the proposed obstetric care and interventions;

743

Appendix 6 (3)

24

the importance of minimising the risk to her own health during pregnancy and delivery of her baby; (4) the importance of maximising the prospects of safe delivery of the baby; (ii) explains whether P knows of the application and, if not sets out the cogent reasons why P has not and should not be informed of the application; (iii) identifies the individuals whose views should be taken into account in accordance with s.4(7) of the MCA and sets out the gist of their views as to (1) whether the obstetric care that is proposed is in P’s best interests and, if not, what care they consider would be; (2) P’s own past and present wishes and feelings and beliefs and values in relation to the matters in (i) above. Any orders authorising medical intervention, restraint and/or a deprivation of liberty are, of course, permissive and not mandatory. P’s capacity to make decisions and/or the need to take any of the measures authorised by the court must be kept under close review by her treating clinicians and medical professions throughout P’s antenatal, perinatal and postnatal care.

Documents Checklist 1. Application notice 2. Transfer Care Plan (where relevant) 3. Obstetric care plan 4. Restraint care plan 5. Witness statement from the responsible consultant psychiatrist 6. Witness statement from the responsible consultant obstetrician

744

Index

Abortion Abortion Act 1967 compliance with conditions, 9.6–9.18 introduction, 9.4 patient’s consent, 9.19–9.33 certification of medical opinion, 9.10 children, 9.21 competent adults, 9.20 conclusion, 9.34 conditions certification of medical opinion, 9.10 conscientious objection, 9.6 grounds, 9.11–9.17 multiple foetuses, 9.7 place of treatment, 9.18 procedure performed by medical practitioner, 9.9 risk of injury to mother, 9.11–9.14 risk to life of pregnant woman, 9.16 substantial risk of child being seriously handicapped, 9.17 successful procedure, 9.8 termination necessary to prevent grave permanent injury, 9.15 conscientious objection, 9.6 consent of patient children, 9.21 competent adults, 9.20 evidence, 9.29–9.33 incompetent adults, 9.22–9.28 procedure, 9.29–9.33 grounds risk of injury to mother, 9.11–9.14 risk to life of pregnant woman, 9.16 substantial risk of child being seriously handicapped, 9.17 termination necessary to prevent grave injury, 9.15 Human Fertilisation and Embryology Act 1990, 9.5

Abortion – contd incompetent adults best interests, 9.24 determining competence, 9.23 introduction, 9.22 use of force, 9.25 Infant Life (Preservation) Act 1929, 9.3 multiple foetuses, 9.7 Offences Against the Person Act 1861, 9.2 place of treatment, 9.18 procedure performed by medical practitioner, 9.9 procedure to obtain consent considerations for court, 9.28 making an application, 9.26 timing of application, 9.27 risk of injury to mother greater than if pregnancy continues, 9.14 introduction, 9.11 mental or physical health, 9.13 pregnancy less than 24 weeks, 9.12 risk to life of pregnant woman, 9.16 statutory framework, 9.1–9.5 substantial risk of child being seriously handicapped, 9.17 successful procedure, 9.8 termination necessary to prevent grave permanent injury, 9.15 Acceleration of death capacity generally, 2.28 Ms C case, 2.29 Acts and omissions persistent vegetative state, 15.15 Admission to hospital decision-making for children, 4.43 Adults capacity advance decisions, 2.32–2.42 anticipated loss, 2.23 change of mind, 2.31

745

Index Adults – contd capacity – contd conclusion, 2.43 consent to treatment, 2.26 court decision, 2.21 definition of ‘adult’, 2.1 definition of ‘capacity’, 2.6–2.7 general rules, 2.2–2.4 presumption, 2.5 principles for determining capacity, 2.17–2.19 recording assessments, 2.20 refusal of treatment, 2.27–2.30 relevant information, 2.9–2.16 specific decision, 2.8 temporary incapacity, 2.22 consent absolute nature, 2.24 expressed wishes, 2.26 lawfulness of treatment, 2.25 decision-making for See also Decision-making for adults conclusion, 3.45 context, 3.2 general rules, 3.3–3.11 inherent jurisdiction, under, 3.42–3.44 jurisdiction, 3.1 MCA, under, 3.12–3.41 feeding competent, 13.16–13.20 injunctions, 13.32 lacking capacity to consent, 13.21–13.28 procedure, 13.29–13.32 feeding (competent adults) detention under MHA, 13.17–13.20 general rule, 13.16 feeding (incapacitated adults) inherent jurisdiction of court, 13.23 Mental Capacity Act 2005, 13.24–13.28 procedure, 13.29–13.32 treatment not provided under MHA, 13.22 treatment under MHA 1983, 13.21 human organ and tissue donation, 19.20 meaning, 2.1 refusal of nutrition and hydration competent, 13.16–13.20 injunctions, 13.32 lacking capacity to consent, 13.21–13.28 procedure, 13.29–13.32

Adults – contd refusal of nutrition and hydration (competent adults) detention under MHA, 13.17–13.20 general rule, 13.16 refusal of nutrition and hydration (incapacitated adults) inherent jurisdiction of court, 13.23 Mental Capacity Act 2005, 13.24–13.28 procedure, 13.29–13.32 treatment not provided under MHA, 13.22 treatment under MHA 1983, 13.21 religious objections competent, 14.2–14.12 incapacitated, 14.13–14.19 religious objections (competent adults) ability to understand information, 14.6 ability to use or weigh information, 14.7 advice, 14.8 close friends’ role, 14.11 concluding comment, 14.25 confirmation patient has capacity, 14.5 general principle, 14.2 power to treat under MHA, s 63, 14.3 recording of decision against medical advice, 14.12 relatives’ role, 14.11 scope of decision, 14.10 steps to be taken, 14.4–14.7 undue influence, 14.9 religious objections (incapacitated adults) advance decisions, 14.14–14.16 general principle, 14.13 written declarations, 14.17 sterilisation competent, 10.2–10.6 incapacitated, 10.7–10.19 sterilisation (competent adults) general rule, 10.2 informed consent, 10.3 overview, 10.6 procedure, 10.5 role of partner/spouse, 10.4 sterilisation (incapacitated adults) availability of contraception, 10.12 best interests, 10.8–10.9 capacity, 10.7 counselling, 10.13 covert treatment, 10.19 education, 10.13

746

Index Adults – contd sterilisation (incapacitated adults) – contd effect on standard of care, 10.16 freedom of association, 10.15 immediacy of risks, 10.18 male patients, 10.17–10.19 need for counselling, 10.13 pregnancy risk, 10.14 procedure, 10.20 prospect of attaining/recovering for relevant decision, 10.10 reduction of intrusion by statutory services, 10.15 risk of pregnancy, 10.14 risk of sexual contact, 10.11 standard of care, effect on, 10.16 Adults lacking capacity abortion best interests, 9.24 determining competence, 9.23 introduction, 9.22 use of force, 9.25 assisted reproduction, 11.22 refusal of nutrition and hydration inherent jurisdiction of court, 13.23 Mental Capacity Act 2005, 13.24–13.28 procedure, 13.29–13.32 treatment not provided under MHA, 13.22 treatment under MHA 1983, 13.21 religious objections advance decisions, 14.14–14.16 general principle, 14.13 written declarations, 14.17 sterilisation availability of contraception, 10.12 best interests, 10.8–10.9 capacity, 10.7 counselling, 10.13 covert treatment, 10.19 education, 10.13 effect on standard of care, 10.16 freedom of association, 10.15 immediacy of risks, 10.18 male patients, 10.17–10.19 need for counselling, 10.13 pregnancy risk, 10.14 procedure, 10.20 prospect of attaining/recovering for relevant decision, 10.10 reduction of intrusion by statutory services, 10.15 risk of pregnancy, 10.14 risk of sexual contact, 10.11 standard of care, effect on, 10.16

Advance decisions applicability, 2.35–2.36 decision-making for adults, and, 3.31 duration, 2.41 form, 2.38 general principle, 2.32 informed refusal, 2.39 knowledge, 2za.40 MCA, under, 2.33–2.36 MHA s.63, under, 2.37 persistent vegetative state, 15.58 pregnancies guidelines, 12.24 procedure for obstetric units, 12.32 records, 2.42 religious objections to treatment effect of uncertainty, 14.16 generally, 14.14 reported oral, 14.15 validity, 2.34 Advice competent adults, religious objections, 14.8 Alternative forms of treatment informed consent, 1.27 proposal to treat, 1.5 Anorexia nervosa See also Refusal of nutrition and hydration generally, 13.1 Appeals Court of Protection, from, 6.37 High Court, from, 6.57 Approval of drugs and treatments generally, 8.17 Assault persistent vegetative state, 15.16 Assisted reproduction adults lacking capacity, 11.22 birth mother, 11.32 Brexit impact, 11.6 Chair’s Letters, 11.11 Chief Executive’s Letter, 11.12 Code of Practice, 11.9 conclusion, 11.54 conscientious objection, 11.31 consent adults lacking capacity, 11.22 cases, 11.25–11.26 Evans decision, 11.25 export of gametes and embryos, 11.19–11.21 import of gametes and embryos, 11.19–11.21 incapacitated adults, 11.22 introduction, 11.16 procedure, 11.17–11.18

747

Index Assisted reproduction – contd consent – contd storage periods, 11.23–11.24 withdrawal pre-embryo transfer, 11.25 directions, 11.8 European Tissues and Cells Directives generally, 11.5 post-Brexit position, 11.6 export of gametes and embryos, 11.19–11.21 guidance notes/policies/manuals, 11.13 Human Fertilisation and Embryology Act 1990 adults lacking capacity, 11.22 birth mother, 11.32 Code of Practice, 11.9 conscientious objection, 11.31 consent, 11.16–11.17 directions, 11.8 generally, 11.3 introduction, 11.1 licensing, 11.14–11.15 posthumous gamete use, 11.34 preimplantation genetic screening, 11.35 welfare clause, 11.33 Human Fertilisation and Embryology Act 2008 generally, 11.4 introduction, 11.1 Human Fertilisation and Embryology Authority Chair’s Letters, 11.10–11.11 Chief Executive’s Letter, 11.12 Code of Practice, 11.9 directions, 11.8 guidance, 11.13 import of gametes and embryos, 11.19–11.21 introduction, 11.1 human rights, 11.1 import of gametes and embryos, 11.19–11.21 incapacitated adults, 11.22 introduction, 11.1 licensing regime conditions, 11.15 generally, 11.14 post-Brexit position, 11.6 posthumous gamete use, 11.34 preimplantation genetic screening, 11.35–11.40 regulatory regime Chair’s Letters, 11.10–11.11 Chief Executive’s Letter, 11.12 Code of Practice, 11.9

Assisted reproduction – contd regulatory regime – contd directions, 11.8 EU Directives, 11.5 guidance, 11.13 HFEA 1990, 11.3 HFEA 2008, 11.4 introduction, 11.2 post-Brexit position, 11.6 storage periods extension, 11.24 generally, 11.23 welfare clause, 11.33 withdrawal of consent pre-embryo transfer, 11.25 Assisted suicide challenges to ECHR, 16.5–16.11 current law, 16.19–16.21 DPP Guidance, 16.2 end of life care, 16.17–16.18 future changes, 16.22–16.23 introduction, 16.1–16.3 legislative changes, 16.12–16.16 ‘locked-in’ syndrome, 16.4 present context, 16.4 public interest prosecutions, 16.2 statutory proposals, 16.12–16.16 Authority See also Consent duration, 1.35–1.36 scope, 1.34 withdrawal, 1.37 Autonomy decision-making for adults case law, 3.5–3.8 exception, 3.4 generally, 3.3 suicide generally, 17.10–17.14 liability for failing to act, 17.15–17.23 Best interests abortion, 9.24 capacity, 2.4 children alternative dispute resolution, 4.20 general approach, 4.21 general principles, 4.22 Gillick competence, 4.8 introduction, 4.20 legal challenges to the test, 4.26–4.30 parental rights, 4.25 participation of parents, 4.31 religious objections, 14.21 sterilisation, 10.23 views of minor, 4.23 views of parents, 4.24–4.31

748

Index Best interests – contd decision-making for adults Covid-19 vaccination, 3.40 determination, 3.13 general power, 3.10 holistic, 3.14 decision-making for children Alfie Evans case, 4.26 Alta Fixsler case, 4.28 alternative dispute resolution, 4.20 Charlie Gard case, 4.26 general approach, 4.21 general principles, 4.22 Gillick competence, 4.8 introduction, 4.20 legal challenges to the test, 4.26–4.30 parental rights, 4.25 participation of parents, 4.31 Pippa Knight case, 4.27 religious objections, 14.21 sterilisation, 10.23 Tafida Raqeeb case, 4.30 views of minor, 4.23 views of parents, 4.24–4.31 human organ and tissue donation, 19.16 persistent vegetative state Bland decision, 15.9–15.14 effect of determination, 15.16 human rights, 15.17–15.22 introduction, 15.6–15.7 overview, 15.3 religious objections children, 14.21 restraint, and, 5.32 sterilisation children, 10.23 incapacitated adults, 10.8–10.9 termination of pregnancy, 9.24 Birth mother assisted reproduction, 11.32 Blood transfusions See also Religious objections generally, 14.1 Bolam reasonableness persistent vegetative state, 15.11 Brain stem death definition of death, 18.5–18.11 diagnosis of death, 18.14 Brexit assisted reproduction, 11.6 Bundles Practice Directions, 6.17 Caesarean section cases See also Pregnanices capacity, 12.8 competent adults, 12.5–12.6

Caesarean section cases – contd generally, 12.4 interests of the foetus, 12.10 procedure, 12.11 Re MB decision, 12.7–12.11 Re S decision, 12.5 reasonable force, 12.9 St George’s Healthcare NHS Trust v S, 12.12 CAFCASS generally, 6.13 Capacity See also Competent adults abortion, 9.20 acceleration of death generally, 2.28 Ms C case, 2.29 adults advance decisions, 2.32–2.42 anticipated loss, 2.23 change of mind, 2.31 conclusion, 2.43 consent to treatment, 2.26 court decision, 2.21 definition of ‘adult’, 2.1 definition of ‘capacity’, 2.6–2.7 general rules, 2.2–2.4 presumption, 2.5 principles for determining capacity, 2.17–2.19 recording assessments, 2.20 refusal of treatment, 2.27–2.30 relevant information, 2.9–2.16 specific decision, 2.8 temporary incapacity, 2.22 advance decisions applicability, 2.35–2.36 duration, 2.41 form, 2.38 general principle, 2.32 informed refusal, 2.39 knowledge, 2za.40 MCA, under, 2.33–2.36 MHA s.63, under, 2.37 records, 2.42 validity, 2.34 anticipated loss, 2.23 assessment general principles, 2.17 guidance, 2.19 recording, 2.20 steps to be take, 2.18 best interests treatment, 2.4 caesarean section cases, 5.10, 12.8 causation, 2.7 change of mind, 2.31 communicating the decision, 2.15

749

Index Capacity – contd conclusion, 2.43 consent, and See also Consent absolute nature, 2.24 expressed wishes, 2.26 lawfulness of treatment, 2.25 court decision, 2.21 decision-specific, 2.8 definition, 2.6–2.7 determination of general principles, 2.17 guidance, 2.19 recording, 2.20 steps to be take, 2.18 ‘diagnostic’ test, 2.7 disturbance in functioning of person’s mind, 2.7 establishing, 2.10 ‘functional’ test communicating the decision, 2.15 generally, 2.7 limbs, 2.11–2.15 retaining relevant information, 2.12 understanding relevant information, 2.11 using and weighing relevant information, 2.13–2.14 general rules best interests treatment, 2.4 limited proxy of consent for others, 2.3 respect for wishes of patient, 2.2 identification of relevant information establishing capacity, 2.10 ‘functional’ test, 2.11–2.15 introduction, 2.9 irrational decisions, 2.16 impairment of functioning of person’s mind, 2.7 inability to make decisions, 2.6 informed consent, and, 2.10 interests of viable foetus, 2.30 irrational decisions, 2.16 issue-specific, 2.8 ‘lack of capacity’, 2.6 persistent vegetative state, 15.3 presumption, 2.5 principles for determining capacity, 2.17–2.19 proxy of consent for others, 2.3 recording assessments, 2.20 refusal of nutrition and hydration detention under MHA, 13.17–13.20 general rule, 13.16

Capacity – contd refusal of treatment acceleration of death, 2.28–2.29 interests of viable foetus, 2.30 relevant information generally, 2.9 retaining, 2.12 understanding, 2.11 using and weighing, 2.13–2.14 religious objections to treatment ability to understand information, 14.6 ability to use or weigh information, 14.7 advice, 14.8 close friends’ role, 14.11 concluding comment, 14.25 confirmation patient has capacity, 14.5 general principle, 14.2 power to treat under MHA, s 63, 14.3 recording of decision against medical advice, 14.12 relatives’ role, 14.11 scope of decision, 14.10 steps to be taken, 14.4–14.7 undue influence, 14.9 respect for wishes of patient, 2.2 restraint, 5.9–5.10 retaining relevant information, 2.12 specific decision generally, 2.8 relevant information, 2.9 suicide, 17.10–17.14 temporary incapacity, 2.22 understanding relevant information, 2.11 unwise decisions, 2.16 using relevant information, 2.13–2.14 viable foetus, 2.30 weighing relevant information, 2.13–2.14 Ceiling of care religious objections to treatment of child, 14.30 Change of mind capacity, 2.31 Chair’s Letters assisted reproduction, 11.11 Charges healthcare provision, 8.11–8.13 Chief Executive’s Letter assisted reproduction, 11.12 Childbirth advance decisions guidelines, 12.24 procedure for obstetric units, 12.32

750

Index Childbirth – contd advance planning, 12.21 advice about possible treatment, 12.29 assessment of capacity, 12.28 caesarean sections capacity, 12.8 competent adults, 12.5–12.6 generally, 12.4 interests of the foetus, 12.10 procedure, 12.11 Re MB decision, 12.7–12.11 Re S decision, 12.5 reasonable force, 12.9 St George’s Healthcare NHS Trust v S, 12.12 comatose women, 12.25 compliance with court guidelines, 12.37 conclusions, 12.40 congenital disabilities, 12.3 continual advice to patient, 12.38 contingency planning for court application, 12.34–12.36 contingent declarations, 12.22–12.26 Court of Appeal guidelines introduction, 12.13 MCA in force, with, 12.14–12.15 Court of Protection guidelines advance decisions, 12.24 advance planning, 12.21 comatose women, 12.25 contingent declarations, 12.22–12.26 delay, 12.20 evidence, 12.17–12.18 forcible transfer to hospital for delivery, 12.26 NHS Trust (1 and 2) v FG, 12.16 notifying the patient, 12.19 persistent vegetative state, 12.25 procedure, 12.17–12.18 timing of applications, 12.20 delay, 12.20 discussion about possible loss of capacity, 12.30 evidence, 12.17–12.18 foetal rights in obstetrics, 12.2 forcible transfer to hospital for delivery, 12.26 interests of the foetus, 12.10 introduction, 12.2 legal background, 12.2–12.12 liaison between teams, 12.31 notifying the patient, 12.19 patient rights in obstetrics, 12.2 persistent vegetative state, 12.25

Childbirth – contd procedure for obstetric units advance decisions, 12.32 advice about possible treatment, 12.29 assessment of capacity, 12.28 compliance with court guidelines, 12.37 continual advice to patient, 12.38 contingency planning for court application, 12.34–12.36 discussion about possible loss of capacity, 12.30 introduction, 12.27 liaison between teams, 12.31 referral and assessment where capacity in doubt, 12.33 procedure for patients, 12.39 psychiatric referral and assessment where capacity in doubt, 12.33 RCOG Guidelines, 12.2 reasonable force, 12.9 Children abortion, 9.21 court proceedings considerations, 6.11–6.12 jurisdiction as to 16 to 17 year olds, 6.16 respondents, as, 6.76 decision-making for See also Decision-making for children best interests, 4.20–4.31 conclusion, 4.45 consent by child, 4.2–4.8 further considerations, 4.32–4.40 introduction, 4.1 MHA, under, 4.43–4.44 parental responsibility, 4.16–4.19 procedure, 4.41–4.42 refusal of treatment, 4.9–4.15 defendants, as, 6.50 feeding aged 16 and 17, 13.4 deprivation of liberty, 13.7–13.14 effect of disorder on competence, 13.5 exercise of court’s jurisdiction, 13.5 general principles, 13.3–13.6 Gillick competence, 13.5 procedure, 13.15 under age of 16, 13.3 human organ and tissue donation consent, 19.19 generally, 19.15

751

Index Children – contd litigation considerations, 6.11–6.12 jurisdiction as to 16 to 17 year olds, 6.16 respondents, as, 6.76 meaning, 4.1 persistent vegetative state absence of pain, 15.75 dignity, 15.76–15.80 introduction, 15.71 mediation, 15.85 medical expert advice, 15.83 procedure, 15.81–15.84 social media, 15.82 welfare of child, 15.72–15.74 refusal of nutrition and hydration aged 16 and 17, 13.4 deprivation of liberty, 13.7–13.14 effect of disorder on competence, 13.5 exercise of court’s jurisdiction, 13.5 general principles, 13.3–13.6 Gillick competence, 13.5 procedure, 13.15 under age of 16, 13.3 refusal of treatment compulsory treatment, 4.11–4.12 general rule, 4.10–4.13 Gillick competence, 4.14 human rights, 4.11–4.12 introduction, 4.9 Re X (A Child) (No 2), 4.13 16 and 17 years of age, 4.14 under 16, 4.15 religious objections best interests, 14.21 ‘ceiling of care’ cases, 14.30 concluding comment, 14.25 consent of parent, 14.20 Fixsler decision, 14.24–14.29 general principle, 14.20 ‘Gillick competent’ child, 14.31 human rights, 14.20 life-limiting conditions, 14.22– 14.30 procedural issues, 14.33–14.36 Raqeeb decision, 14.23 Re X (No 2) decision, 14.32 rolling orders, 14.32 withdrawal of treatment, 14.22–14.30 sterilisation best interests, 10.23 general principle, 10.21–10.22 learning disabilities, 10.22 no learning disabilities, 10.21 procedure, 10.24

Clinical alternatives healthcare provision, 7.3 Clinical commissioning groups (CCGs) determining responsibility, 8.8–8.9 duties, 8.6 individual decision-making, 8.18 introdution, 8.3 Clinically assisted nutrition and hydration (CANH) See also Withdrawal of treatment generally, 15.1 Clinically effective healthcare provision, 8.34 Clinician’s personal beliefs clinical alternatives, 7.3 clinician’s veto, 7.5 discrimination, 7.35 private treatment, 7.2 resources available to other patients, 7.7 second opinions, 7.4 Clinician’s veto healthcare provision, 7.5 Codes of Practice assisted reproduction, 11.9 decision-making for adults, 3.1 Coma See also Withdrawal of treatment generally, 15.2 Comatosed women pregnancy, management of, 12.23 Communication consent conduct, 1.18 introduction, 1.15 oral, 1.17 written, 1.16 Competent adult caesarean sections, 12.5–12.6 refusal of nutrition and hydration detention under MHA, 13.17–13.20 general rule, 13.16 religious objections ability to understand information, 14.6 ability to use or weigh information, 14.7 advice, 14.8 close friends’ role, 14.11 concluding comment, 14.25 confirmation patient has capacity, 14.5 general principle, 14.2 power to treat under MHA, s 63, 14.3 recording of decision against medical advice, 14.12 relatives’ role, 14.11

752

Index Competent adult – contd religious objections – contd scope of decision, 14.10 steps to be taken, 14.4–14.7 undue influence, 14.9 sterilisation general rule, 10.2 informed consent, 10.3 procedure, 10.5 role of partner/spouse, 10.4 Comprehension consent, 1.14 Compulsorily detained patient suicide, 17.37–17.46 Compulsory treatment decision-making for children, 4.11–4.12 Conduct consent, 1.18 Confidentiality persistent vegetative state, 15.60 Congenital disabilities pregnancies, 12.3 Conjoined twins decision-making for children, 4.33 Conscientious objection abortion, 9.6 assisted reproduction, 11.31 Consent See also Capacity abortion children, 9.21 competent adults, 9.20 evidence, 9.29–9.33 incompetent adults, 9.22–9.28 procedure, 9.29–9.33 adults absolute nature, 2.24 expressed wishes, 2.26 lawfulness of treatment, 2.25 assisted reproduction adults lacking capacity, 11.22 cases, 11.25–11.26 Evans decision, 11.25 export of gametes and embryos, 11.19–11.21 import of gametes and embryos, 11.19–11.21 incapacitated adults, 11.22 introduction, 11.16 procedure, 11.17–11.18 storage periods, 11.23–11.24 withdrawal pre-embryo transfer, 11.25 authority duration, 1.35–1.36 scope, 1.34 withdrawal, 1.37

Consent – contd children human organ and tissue donation, 19.19 communication conduct, 1.18 introduction, 1.15 oral, 1.17 written, 1.16 comprehension, 1.14 conclusion, 1.38 conduct, 1.18 decision-making for adults, 3.33 decision-making for children Bell v Tavistock, 4.6–4.8 general principle, 4.2 Gillick competence, 4.5 16 and 17 years of age, 4.3–4.4 under 16, 4.5 duress, 1.32 framework introduction, 1.1–1.2 proposal to treat, 1.3–1.12 fraud, 1.31 human organ and tissue donation adults, 19.20 ‘appropriate consent’, 19.13 children, 19.19 HTA Codes, 19.13 introduction, 19.12 information about risks alternative forms of treatment, 1.27 answering questions, 1.26 common law, 1.20 delegation, 1.25 duty of care, 1.20–1.23 known comparative outcomes, 1.28–1.29 respect for private and family life, 1.24 responding to needs of patient, 1.22 test of materiality, 1.21 trespass to the person, 1.19 intention, 1.13 oral, 1.17 proposal to treat alternative forms of treatment, 1.5 communication, 1.10–1.12 compelling doctor to treat, 1.6 demand for treatment by patient, 1.9 formulation, 1.3 irrational decisions by care providers, 1.7 resources, 1.8 risks of treatment, 1.4 state of mind comprehension, 1.14 intention, 1.13

753

Index Consent – contd sterilisation, 10.1 suicide, 17.10 undue influence, 1.32 vitiating factors duress, 1.32 fraud, 1.31 introduction, 1.30 undue influence, 1.32 written, 1.16 Consultation decision-making for adults DNAR Notices, 3.24 generally, 3.23 sharing information, 3.25 Contingent declarations pregnancies, 12.22–12.26 ‘Continuing healthcare’ healthcare provision, 8.19–8.20 Contraception decision-making for adults, 3.37 sterilisation, 10.12 Controversial treatment decision-making for adults, 3.28 Corpse disposal, 18.36–18.39 possession, 18.36–18.39 status, 18.27–18.29 Costs Court of Protection, 6.35 High Court, 6.56 Official Solicitor, 6.36 Counselling sterilisation, 10.13 surrogacy, 11.43 Court approval withdrawal of or withholding treatment advance decisions of patient, 15.58 applications, 15.59–15.67 circumstances in which required, 15.56–15.57 confidentiality, 15.60 emergency applications, 15.68–15.69 evidence, 15.61–15.67 introduction, 15.55 prior consent of patient, 15.58 procedure, 15.59–15.69 Court of Appeal guidelines pregnancies introduction, 12.13 MCA in force, with, 12.14–12.15 Court of Protection proceedings See also Court proceedings age thresholds, 6.17 appeals, 6.62

Court of Protection proceedings – contd applicants generally, 6.23–6.24 purpose, 6.25 bundles, 6.31 CAFCASS, 6.30 commencement of proceedings non-urgent proceedings, 6.50–6.51 urgent proceedings, 6.52–6.57 considerations adult patients, 6.9–6.10 child patients, 6.11 ‘deprivation of liberty’, 6.8 DNAR, 6.10 introduction, 6.2–6.4 Practice Guidance, 6.5–6.7 costs generally, 6.60 Official Solicitor, of, 6.61 directions, 6.58 documentation bundles, 6.31 orders, 6.32 position statements, 6.32 final hearings, 6.59 first hearing, 6.58 general approach, 6.38 hearings final, 6.59 first, 6.58 generally, 6.33 introduction, 6.35 judges, 6.36 jurisdiction age thresholds, 6.17 exclusions, 6.14 generally, 6.14 introduction, 6.13 16 to 17 year olds, 6.16 summary, 6.18 lack of jurisdiction, 6.15 level of judge, 6.49 litigation friendfs, 6.44–6.46 location, 6.36 meeting with the judge, 6.28 non-urgent proceedings, 6.50–6.51 notification of proceedings, 6.48 Official Solicitor, 6.29 orders, 6.32 parties applicants, 6.23–6.25 CAFCASS, 6.30 Official Solicitor, 6.29 participation of P, 6.26–6.30

754

Index Court of Protection proceedings – contd participation of P generally, 6.26 meeting with judge, 6.28 necessity, 6.27 patient’s views, 6.28 permission to apply, 6.47 position statements, 6.32 powers, 6.39 pre-action considerations, 6.43–6.49 pre-action procedure, 6.43 privacy, 6.40–6.42 procedure applicants, 6.23–6.25 bundles, 6.31 CAFCASS, 6.29 documentation, 6.31–6.32 hearings, 6.33 introduction, 6.19 meeting with the judge, 6.28 Official Solicitor, 6.29 orders, 6.32 participation of P, 6.26–6.30 parties, 6.23–6.30 position statements, 6.32 source of rules, 6.37 timing, 6.20–6.21 typing up of order, 6.34 urgency, 6.22 public law, and, 6.19 publicity, 6.40–6.42 respondents, 6.48 16 to 17 year olds, 6.16 subsequent directions hearings, 6.58 summary, 6.18 timing generally, 6.20–6.21 urgency, 6.22 typing up of order, 6.34 urgency, 6.22 urgent proceedings, 6.52–6.57 Court proceedings access to healthcare applicable jurisdiction, 8.24–8.25 clinically effective, 8.34 equality law, 8.29 exceptionality, 8.30–8.33 human rights, 8.27 obtaining and interpreting evidence, 8.35 policy and guidance challenges, 8.28 requiring doctors/NHS bodies to provide treatment, 8.23 spending money on particular treatment, 8.26 adult patients, 6.9–6.10

Court proceedings – contd applicants generally, 6.23–6.24 purpose, 6.25 CAFCASS, 6.30 child patients, 6.11–6.12 conclusion, 6.89 considerations adult patients, 6.9–6.10 child patients, 6.11 ‘deprivation of liberty’, 6.8 DNAR, 6.10 introduction, 6.2–6.4 Practice Guidance, 6.5–6.7 Court of Protection age thresholds, 6.17 appeals, 6.62 commencement of proceedings, 6.50–6.57 costs, 6.60–6.61 directions, 6.58 final hearings, 6.59 first hearing, 6.58 general approach, 6.38 introduction, 6.35 judges, 6.36 jurisdiction, 6.14–6.18 lack of jurisdiction, 6.15 level of judge, 6.49 litigation friendfs, 6.44–6.46 location, 6.36 non-urgent proceedings, 6.50–6.51 notification of proceedings, 6.48 permission to apply, 6.47 powers, 6.39 pre-action considerations, 6.43–6.49 pre-action procedure, 6.43 privacy, 6.40–6.42 procedural issues, 6.19–6.34 procedure rules, 6.37 publicity, 6.40–6.42 respondents, 6.48 16 to 17 year olds, 6.16 subsequent directions hearings, 6.58 summary, 6.18 urgent proceedings, 6.52–6.57 decision-making for children generally, 4.41 practical tips, 4.42 ‘deprivation of liberty’, 6.8 DNAR, 6.10 healthcare provision applicable jurisdiction, 8.24–8.25 clinically effective, 8.34 equality law, 8.29 exceptionality, 8.30–8.33

755

Index Court proceedings – contd healthcare provision – contd human rights, 8.27 obtaining and interpreting evidence, 8.35 policy and guidance challenges, 8.28 requiring doctors/NHS bodies to provide treatment, 8.23 spending money on particular treatment, 8.26 High Court appeals, 6.87 body responsible for treatment or care, 6.75 children, 6.76 commencement of proceedings, 6.79–6.81 costs, 6.86 final hearings, 6.84 first hearings, 6.83 general cases, 6.66–6.67 generally, 6.63 hearings, 6.83–6.85 inherent jurisdiction, 6.88 jurisdiction, 6.13 local authorities, 6.78 local authority issues, 6.69 minors’ jurisdiction, 6.63–6.87 non-urgent proceedings, 6.79–6.80 parental issues, 6.68 parents, 6.77 privacy, 6.82 procedural issues, 6.19–6.34 procedure rules, 6.65–6.86 publicity, 6.82 regional hearings, 6.64 relationship with CoP, 6.15 respondents, 6.75–6.78 16 to 17 year olds, 6.16 subsequent directions hearings, 6.83 treatment despite competent refusal, 6.70–6.74 urgent proceedings, 6.81 vulnerable adults jurisdiction, 6.88 identifying appropriate court Court of Protection, 6.14–6.18 introduction, 6.13 introduction, 6.1 Official Solicitor, 6.29 parties applicants, 6.23–6.25 CAFCASS, 6.30 Official Solicitor, 6.29 participation of P, 6.26–6.30

Court proceedings – contd participation of P generally, 6.26 meeting with judge, 6.28 necessity, 6.27 patient’s views, 6.28 Practice Guidance, 6.5–6.7 procedural issues applicants, 6.23–6.25 bundles, 6.31 CAFCASS, 6.29 documentation, 6.31–6.32 hearings, 6.33 introduction, 6.19 meeting with the judge, 6.28 Official Solicitor, 6.29 orders, 6.32 participation of P, 6.26–6.30 parties, 6.23–6.30 position statements, 6.32 timing, 6.20–6.21 typing up of order, 6.34 urgency, 6.22 public law, 6.19 Covert medication or treament communication to P, 3.38 deception, 3.36 decision-making for adults communication to P, 3.38 deception, 3.36 generally, 3.34–3.35 insertion of contraceptive devices, 3.37 respect for private and family life, 3.36 insertion of contraceptive devices, 3.37 respect for private and family life, 3.36 restraint, 5.23 sterilisation, 10.19 Covid-19 vaccinations decision-making for adults best interests, 3.40 ‘booster’ shots, 3.41 generally, 3.39 Death See also Right to die Academy of Medical Royal Colleges Code of Practice definition of death, 18.9–18.10 diagnosis of death, 18.13–18.17 after, 18.27–18.29 brain stem death definition of death, 18.5–18.11 diagnosis of death, 18.14 certification, 18.18

756

Index Death – contd cessation of cardio-respiratory function, 18.15–18.17 conclusion, 18.41 definition AMRC Code, 18.3 Australia, 18.4 generally, 18.1–18.12 US, 18.3 diagnosis brain stem death, 18.14 certification, 18.18 cessation of cardio-respiratory function, 18.15–18.17 introduction, 18.13 notification, 18.18 ‘process of dying’, 18.19–18.26 disposal of corpse, 18.36–18.39 importance of ascertaining, 18.2 ‘irreversible’, 18.12 ‘no property’ in body, 18.28–18.29 notification, 18.18 palliative care, 18.19–18.23 permanent cessation of all bodily functions, 18.5 possession of corpse, 18.36–18.39 ‘process of dying’ approach to care for dying, 18.20 court’s role in overseeing, 18.24 guidance, 18.25 law, and, 18.21 legal and moral issues, 18.26 palliative care, 18.19–18.23 proof, 18.5 status of corpse, 18.27–18.29 use and storage of human bodies and tissues, 18.40 ‘work and skill’ exception, 18.30– 18.35 Deception restraint, 5.23 Decision-making for adults See also Decision-making for children advance decisions, 3.31 autonomy case law, 3.5–3.8 exception, 3.4 generally, 3.3 ‘balance sheet’, 3.15–3.17 best interests Covid-19 vaccination, 3.40 determination, 3.13 general power, 3.10 holistic, 3.14 Code of Practice, 3.1 competing issues analysis, 3.15–3.17 conclusion, 3.45

Decision-making for adults – contd consent to treatment by CoP, 3.33 consultation DNAR Notices, 3.24 generally, 3.23 sharing information, 3.25 context, 3.2 controversial treatment, 3.28 covert administration of medication communication to P, 3.38 deception, 3.36 generally, 3.34–3.35 respect for private and family life, 3.36 covert insertion of contraceptive devices, 3.37 Covid-19 vaccination best interests, 3.40 ‘booster’ shots, 3.41 generally, 3.39 dignity, 3.29 DNAR Notices, 3.24 end of life, 3.29 experimental treatment, 3.28 financial interests, 3.27 focus on patient, 3.18–3.20 general rules best interests treatment, 3.10 limited proxy of consent for others, 3.9 necessity, 3.11 respect for wishes of patient, 3.3–3.8 historical context, 3.2 Independent Mental Capacity Advocates, 3.22 information sharing, 3.25 inherent jurisdiction, under, 3.42–3.44 insertion of contraceptive devices, 3.37 interests of others, 3.26 intolerability, 3.29 jurisdiction, 3.1 limited proxy of consent for others, 3.9 MCA, under advance decisions, 3.31 balance sheet, 3.15–3.17 best interests, 3.13–3.14 consent to treatment by CoP, 3.33 consultation, 3.23–3.25 controversial treatment, 3.28 covert administration of medication, 3.34–3.38 Covid-19 vaccination, 3.39–3.41 dignity, 3.29 end of life, 3.29 experimental treatment, 3.28

757

Index Decision-making for adults – contd MCA, under – contd financial interests, 3.27 focus on patient, 3.18–3.20 general principles, 3.12 IMCAs, 3.22 interests of others, 3.26 intolerability, 3.29 introduction, 3.1 power to consent to treatment, 3.33 power to treat, 3.32 P’s wishes and feelings, beliefs and values, 3.21 sanctity of life, 3.30 necessity doctrine, 3.11 power to consent to treatment, 3.33 power to treat, 3.32 P’s wishes and feelings, beliefs and values, 3.21 respect for private and family life, 3.36 respect for wishes of patient case law, 3.5–3.8 generally, 3.3 MHA 1983 s.63 exception, 3.4 sanctity of life, 3.30 sharing information, 3.25 vulnerable adults, 3.42 wishes and feelings, beliefs and values, 3.21 Decision-making for children See also Decision-making for adults ability to consent Bell v Tavistock, 4.6–4.8 general principle, 4.2 Gillick competence, 4.5 16 and 17 years of age, 4.3–4.4 under 16, 4.5 ability to refuse compulsory treatment, 4.11–4.12 general rule, 4.10–4.13 Gillick competence, 4.14 human rights, 4.11–4.12 introduction, 4.9 Re X (A Child) (No 2), 4.13 16 and 17 years of age, 4.14 under 16, 4.15 admission to hospital, 4.43 ‘balance sheet’, 4.40 best interests Alfie Evans case, 4.26 Alta Fixsler case, 4.28 alternative dispute resolution, 4.20 Charlie Gard case, 4.26 general approach, 4.21 general principles, 4.22 Gillick competence, 4.8 introduction, 4.20

Decision-making for children – contd best interests – contd legal challenges to the test, 4.26–4.30 parental rights, 4.25 participation of parents, 4.31 Pippa Knight case, 4.27 Tafida Raqeeb case, 4.30 views of minor, 4.23 views of parents, 4.24–4.31 conclusion, 4.45 conjoined twins case, 4.33 consent to treatment Bell v Tavistock, 4.6–4.8 general principle, 4.2 Gillick competence, 4.5 16 and 17 years of age, 4.3–4.4 under 16, 4.5 deliberate killing, 4.33 dignity, 4.39 disputes between parents generally, 4.18 local authorities, and, 4.19 further considerations, 4.32–4.40 Gillick competence admission to hospital, 4.43 best interests, 4.8 consent to treatment, 4.5 introduction, 4.1 refusal of treatment, 4.14–4.15 human rights introduction, 4.1 refusal of treatment, 4.11–4.12 introduction, 4.1 life sustaining treatment ‘balance sheet’, 4.40 dignity, 4.39 pain, 4.38 preservation of life, 4.37 provision, 4.36 withdrawing, 4.35 withholding, 4.34 MHA, under admission to hospital, 4.43 mental health treatment, 4.44 pain, 4.38 parental responsibility court application required, 4.17 disputes between parents, 4.18–4.19 local authorities, 4.19 power to consent, 4.16–4.17 preservation of life, 4.37 providing life sustaining treatment, 4.36 procedure generally, 4.41 practical tips, 4.42

758

Index Decision-making for children – contd refusal of treatment compulsory treatment, 4.11–4.12 general rule, 4.10–4.13 Gillick competence, 4.14 human rights, 4.11–4.12 introduction, 4.9 Re X (A Child) (No 2), 4.13 16 and 17 years of age, 4.14 under 16, 4.15 16 and 17 years of age admission to hospital, 4.43 capacity, 4.4 consent to treatment, 4.3–4.4 refusal of treatment, 4.14 under 16 consent to treatment, 4.5 refusal of treatment, 4.14–4.15 very young children, 4.32 withdrawing life sustaining treatment, 4.35 withholding life sustaining treatment, 4.34 Delegation informed consent, 1.25 Deliberate killing decision-making for children, 4.33 Deprivation of liberty authorisation applications, 5.84–5.85 DOLS procedure, under, 5.88–5.93 generally, 5.80–5.93 ineligibility of patient to be detained, 5.93–5.104 jurisdiction, 5.85 life sustaining treatment or vital act, 5.106 LPS procedure, under, 5.105–5.114 MCA s 4A(1), under, 5.80–5.83 MC(A)A 2019 s 4B, 5.105–5.114 procedural code, 5.84 review, 5.86–5.87 background, 5.24 ‘Bournewood gap’, 5.24–5.28 Cheshire West decision acid test, 5.52 basis, 5.38–5.39 facts, 5.38–5.39 identifying a deprivation, 5.45–5.51 impact, 5.53–5.54 introduction, 5.29 position prior to, 5.30–5.31 reasoning, 5.40–5.44 children refusal of nutrition and hydration, 13.7–13.14 16 and 17 years, of, 5.72–5.73 under 16, 5.70–5.71

Deprivation of liberty – contd children (feeding) admission under MHA 1983, 13.8 informal admission for treatment of mental disorder, 13.9 inherent jurisdiction, 13.13 introduction, 13.7 Mental Capacity Act 2005, 13.14 parental authority, 13.10–13.12 conclusion, 5.120–5.121 contingency declarations, 5.79 DOLS procedure generally, 5.88–5.93 introduction, 5.3 identifying a deprivation generally, 5.45–5.51 hospital context, in, 5.55–5.69 pointers for practitioner, 5.74–5.78 identifying a deprivation in hospital context admission to intensive care unit, 5.67–5.69 generally, 5.55–5.58 NHS Trust v FG, 5.61–5.66 place and duration of patient’s stay, 5.59–5.60 R(Ferreira) v HM Senior Coroner for Inner South London, 5.67–5.69 serious medical treatment, for, 5.61–5.66 ineligibility of patient to be detained, 5.93–5.104 introduction, 5.3–5.7 Liberty Protection Safeguards (LPS) generally, 5.105–5.114 introduction, 5.3 life sustaining treatment or vital act, 5.106 MCA s 4A(1) authorisation applications, 5.84–5.85 generally, 5.80–5.93 review, 5.86–5.87 MC(A)A 2019 s 4B generally, 5.105 life sustaining treatment or vital act, 5.106 LPS regime, 5.107–5.114 meaning Cheshire West, 5.29–5.31 ECtHR, 5.32–5.34 MIG and MEG, 5.35–5.37 MIG and MEG decision, 5.35–5.37 pointers for practitioners contingency declarations, 5.79 existence of deprivation, 5.74–5.78 practical issues, 5.115–5.119

759

Index Deprivation of liberty – contd refusal of nutrition and hydration (children) admission under MHA 1983, 13.8 informal admission for treatment of mental disorder, 13.9 inherent jurisdiction, 13.13 introduction, 13.7 Mental Capacity Act 2005, 13.14 parental authority, 13.10–13.12 statutory basis, 5.3 ‘Diagnostic’ test capacity, 2.7 Dignity decision-making for adults, 3.29 decision-making for children, 4.39 Directions assisted reproduction, 11.8 Discrimination See also Healthcare provision clinician’s personal beliefs, 7.35 direct, 7.31–7.33 indirect, 7.31–7.33 introduction, 7.29 provision of services, in, 7.30 public sector equality duty, 7.36 reasonable adustments for disability, 7.34 types, 7.31 Do not attempt resuscitation (DNAR) notices decision-making for adults, 3.24 DOLS procedure See also Deprivation of liberty generally, 5.88–5.93 introduction, 5.3 Donation of human organ and tissue adults, 19.20 altruistic donation generally, 19.18 introduction, 19.9 approval by HTA, 19.17 ‘appropriate consent’, 19.13 authorised activities, 19.11 best interests, 19.16 chains, 19.9 children consent, 19.19 generally, 19.15 common law, 19.2 conclusion, 19.23 consent adults, 19.20 ‘appropriate consent’, 19.13 children, 19.19 HTA Codes, 19.13 introduction, 19.12

Donation of human organ and tissue – contd criminal offences removal from deceased person, 19.5 removal from living person, 19.8 directed donation generally, 19.18 introduction, 19.9 domino donation, 19.10 generally, 19.1 genetically or emotionally related organ donation, 19.9, 19.18 healthcare provision, 7.8 Human Tissue Act 2004, under donations by living persons, 19.8–19.20 introduction, 19.3–19.7 preparatory steps taken before death, 19.22 preservation of organs after death, 19.21 Human Tissue Authority Codes consent, 19.13 introduction, 19.3 incompetent adults, 19.14 introduction, 19.1 lawful activities, 19.6 living persons, by approval by HTA, 19.17 authorised activities, 19.11 best interests, 19.16 children, 19.15 consent, 19.12–19.13, 19.19–19.20 incompetent adults, 19.14 introduction, 19.8 types, 19.9–19.10 non-directed donation, 19.9 paired donation generally, 19.18 introduction pooled donation generally, 19.18 introduction post-mortem donation, 19.18 preparatory steps taken before death, 19.22 preservation of organs after death, 19.21 principles, 19.3 schemes, 19.9 statistics, 19.1 transplantable material definition, 19.4 unlawful removal, 19.3 types, 19.9–19.10 whole-body donation, use and storage, 18.40

760

Index Duress consent, 1.32 Duty of care informed consent, 1.20–1.23 Eating disorders See also Refusal of nutrition and hydration introduction, 13.1 NICE Clinical Knowledge Summary, 13.2 Emergency applications withholding or withdraw treatment, 15.68–15.69 End of life Academy of Medical Royal Colleges Code of Practice definition of death, 18.9–18.10 diagnosis of death, 18.13–18.17 after, 18.27–18.29 brain stem death definition of death, 18.5–18.11 diagnosis of death, 18.14 certification, 18.18 cessation of cardio-respiratory function, 18.15–18.17 conclusion, 18.41 decision-making for adults, 3.29 definition AMRC Code, 18.3 Australia, 18.4 generally, 18.1–18.12 US, 18.3 diagnosis brain stem death, 18.14 certification, 18.18 cessation of cardio-respiratory function, 18.15–18.17 introduction, 18.13 notification, 18.18 ‘process of dying’, 18.19–18.26 disposal of corpse, 18.36–18.39 importance of ascertaining, 18.2 ‘irreversible’, 18.12 ‘no property’ in body, 18.28–18.29 notification, 18.18 palliative care, 18.19–18.23 permanent cessation of all bodily functions, 18.5 possession of corpse, 18.36–18.39 ‘process of dying’ approach to care for dying, 18.20 court’s role in overseeing, 18.24 guidance, 18.25 law, and, 18.21 legal and moral issues, 18.26 palliative care, 18.19–18.23

End of life – contd proof, 18.5 right to die, and, 16.17–16.18 status of corpse, 18.27–18.29 use and storage of human bodies and tissues, 18.40 ‘work and skill’ exception, 18.30–18.35 Equality law healthcare provision, 8.29 Ethics withholding or withdrawal of treatment, 15.4–15.7 European Convention on Human Rights (ECHR) See also Human rights assisted reproduction and Art 8, 11.1 restraint and Art 3, 5.16–5.20 right to die, 16.5–16.11 suicide balance to be struck, 17.31–17.32 duty to preserve life, 17.24–17.30 withholding or withdrawal of treatment ethical issues, 15.5 generally, 15.17–15.22 Lambert decision, 15.23–15.28 European Tissues and Cells Directives See also Assisted reproduction generally, 11.5 post-Brexit position, 11.6 Euthanasia challenges to ECHR, 16.5–16.11 current law, 16.19–16.21 DPP Guidance, 16.2 end of life care, 16.17–16.18 future changes, 16.22–16.23 introduction, 16.1–16.3 legislative changes, 16.12–16.16 ‘locked-in’ syndrome, 16.4 present context, 16.4 public interest prosecutions, 16.2 statutory proposals, 16.12–16.16 Evidence pregnancies, 12.17–12.18 religious objections to treatment, 14.35 withholding or withdrawal of treatment, 15.61–15.67 Exceptionaility healthcare provision, 8.30–8.33 Experimental treatment decision-making for adults, 3.28 Export of gametes and embryos assisted reproduction, 11.19–11.21

761

Index Face-to-face consultations healthcare provision, 7.12 Feeding adults competent, 13.16–13.20 injunctions, 13.32 lacking capacity to consent, 13.21–13.28 procedure, 13.29–13.32 children aged 16 and 17, 13.4 deprivation of liberty, 13.7–13.14 effect of disorder on competence, 13.5 exercise of court’s jurisdiction, 13.5 general principles, 13.3–13.6 Gillick competence, 13.5 procedure, 13.15 under age of 16, 13.3 competent adults detention under MHA, 13.17–13.20 general rule, 13.16 conclusion, 13.33 decision-making for adults, 3.6–3.8 deprivation of liberty of children admission under MHA 1983, 13.8 informal admission for treatment of mental disorder, 13.9 inherent jurisdiction, 13.13 introduction, 13.7 Mental Capacity Act 2005, 13.14 parental authority, 13.10–13.12 incapacitated adults inherent jurisdiction of court, 13.23 Mental Capacity Act 2005, 13.24–13.28 procedure, 13.29–13.32 treatment not provided under MHA, 13.22 treatment under MHA 1983, 13.21 introduction, 13.1 NICE Clinical Knowledge Summary, 13.2 procedure Mental Capacity Act 2005, 13.30 MHA 1983, 13.30 need for application, 13.29 preparation, 13.31 restraint and force-feeding, 5.28 suicide, 17.38–17.43 Financial interests decision-making for adults, 3.27 Foetal rights See also Pregnancies abortion, 9.7 caesarean sections, 12.10 generally, 12.2 refusal of treatment, 2.30

Fraud consent, 1.31 Freedom of association sterilisation, 10.15 ‘Functional’ test See also Capacity communicating the decision, 2.15 generally, 2.7 limbs, 2.11–2.15 retaining relevant information, 2.12 understanding relevant information, 2.11 using and weighing relevant information, 2.13–2.14 Gametes export assisted reproduction, 11.19–11.21 Gillick competence admission to hospital, 4.43 best interests, 4.8 consent to treatment, 4.5 introduction, 4.1 refusal of nutrition and hydration, 13.5 refusal of treatment, 4.14–4.15 religious objections to treatment of child, 14.31 GPs choice of practice, 7.10 face-to-face consultations, 7.12 preference for particular person, 7.11 Guidance notes/policies/manuals assisted reproduction, 11.13 Healthcare provision approval of drugs and treatments, 8.17 charges, 8.11–8.13 choice clinical alternatives, 7.3 clinician’s veto, 7.5 conclusion, 7.37 discrimination, 7.29–7.36 general principles, 7.2–7.8 GP practice, of, 7.10 human rights, 7.20–7.28 introduction, 7.1 NHS Constitution, 7.9 NHS Primary Care, 7.10–7.12 NHE Secondary Care, 7.13–7.19 organ donation and transplant, 7.8 private treatment, 7.2 resources available to other patients, 7.7 second opinions, 7.4 clinical alternatives, 7.3

762

Index Healthcare provision – contd clinical commissioning groups (CCGs) determining responsibility, 8.8–8.9 duties, 8.6 individual decision-making, 8.18 introdution, 8.3 clinically effective, 8.34 clinician’s personal beliefs clinical alternatives, 7.3 clinician’s veto, 7.5 discrimination, 7.35 private treatment, 7.2 resources available to other patients, 7.7 second opinions, 7.4 clinician’s veto, 7.5 ‘continuing healthcare’, 8.19–8.20 conclusion, 8.36 court decisions applicable jurisdiction, 8.24–8.25 clinically effective, 8.34 equality law, 8.29 exceptionality, 8.30–8.33 human rights, 8.27 obtaining and interpreting evidence, 8.35 policy and guidance challenges, 8.28 requiring doctors/NHS bodies to provide treatment, 8.23 spending money on particular treatment, 8.26 discrimination clinician’s personal beliefs, 7.35 direct, 7.31–7.33 indirect, 7.31–7.33 introduction, 7.29 provision of services, in, 7.30 public sector equality duty, 7.36 reasonable adustments for disability, 7.34 types, 7.31 equality law, 8.29 exceptionality, 8.30–8.33 expenditure, 8.1 face-to-face consultations, 7.12 general principles clinical alternatives, 7.3 clinician’s veto, 7.5 organ donation and transplant, 7.8 private treatment, 7.2 resources available to other patients, 7.7 second opinions, 7.4 GPs choice of practice, 7.10 face-to-face consultations, 7.12 preference for particular person, 7.11

Healthcare provision – contd human rights court decisions, 8.27 general principles, 7.20–7.28 inhuman or degrading treatment or punishment, 7.23–7.25 life, 7.26–7.27 not to suffer discrimination, 7.28 respect for private and family life, 7.21–7.22 indirect discrimination, 7.31–7.33 informed consent, 7.3 inhuman or degrading treatment or punishment, 7.23–7.25 Integrated Care Systems (ICS), 8.4 introduction, 8.1 judicial review, 8.36 local authorities, 8.19–8.22 National Health Service (NHS) constitution, 8.16 introdution, 8.2 proposed changes, 8.4 status, 8.2 structure, 8.3 National Institute for Health and Care Excellence (NICE) approval of drugs and treatments, 8.17 NHS Constitution choice of provision, 7.9 generally, 8.16 NHS England duties, 8.6 individual decision-making, 8.18 introdution, 8.3 NHS Primary Care choice of GP practice, 7.10 face-to-face consultations, 7.12 preference for particular GP, 7.11 NHE Secondary Care choice by CCG, 7.16 choice of nature of care subsequently provided, 7.15 eligibility, 7.13–7.14 personal health budget, 7.17–7.19 obtaining and interpreting evidence, 8.35 Office for Health Improvement and Disparities, 8.3 organ donation and transplant, 7.8 personal health budget, 7.17–7.19 persons from other countries/other parts of UK access to NHS, 8.14–8.15 charges for healthcare, 8.11–8.13 introduction, 8.10 policy and guidance challenges, 8.28

763

Index Healthcare provision – contd preference for particular GP, 7.11 primary care choice of GP practice, 7.10 face-to-face consultations, 7.12 preference for particular GP, 7.11 ‘primary health need’, 8.19–8.21 private treatment, 7.2 provision of services, 7.30 public health, 8.22 public health bodies, 8.3 public sector equality duty, 7.36 reasonable adustments for disability, 7.34 reasonable requirements, 8.7 referral to secondary care choice by CCG, 7.16 choice of nature of care subsequently provided, 7.15 eligibility, 7.13–7.14 personal health budget, 7.17–7.19 requiring doctors/NHS bodies to provide treatment, 8.23 resources available to other patients general considerations, 7.7 organ donation and transplant, 7.8 right to life, 7.26–7.27 right to respect for private and family life, 7.21–7.22 second opinions, 7.4 secondary care choice by CCG, 7.16 choice of nature of care subsequently provided, 7.15 eligibility, 7.13–7.14 personal health budget, 7.17–7.19 Secretary of State, 8.5 sexual health services, 8.22 social care, 8.19–8.21 specialist providers, 8.2 spending money on particular treatment, 8.26 statutory duties clinical commissioning groups, 8.6 individual decision-making, 8.18 NHS Constitution, 8.16 NHS England, 8.6 NICE, 8.9 persons from other countries/other parts of UK, 8.10–8.15 reasonable requirements, 8.7 responsible CCGs, 8.8–8.9 Secretary of State, 8.5 UK Health Security Agency, 8.3 ‘ventilator’ situation, 7.7 veto by clinician, 7.5

High Court proceedings See also Court proceedings appeals, 6.87 applicants generally, 6.23–6.24 purpose, 6.25 body responsible for treatment or care, 6.75 bundles, 6.31 CAFCASS, 6.30 children considerations, 6.11–6.12 jurisdiction as to 16 to 17 year olds, 6.16 respondents, as, 6.76 commencement of proceedings non-urgent, 6.79–6.80 urgent, 6.81 conclusion, 6.89 considerations adult patients, 6.9–6.10 child patients, 6.11–6.12 ‘deprivation of liberty’, 6.8 DNAR, 6.10 introduction, 6.2–6.4 Practice Guidance, 6.5–6.7 costs, 6.86 documentation bundles, 6.31 orders, 6.32 position statements, 6.32 final hearings, 6.84–6.85 first hearings, 6.83 general cases, 6.66–6.67 generally, 6.63 hearings final, 6.84–6.85 first, 6.83 generally, 6.33 regional, 6.64 inherent jurisdiction, 6.88 introduction, 6.1 jurisdiction age threshold, 6.17 generally, 6.63 inherent, 6.88 introduction, 6.13 regional hearings, 6.64 relationship with CoP, 6.15 16 to 17 year olds, 6.16 summary, 6.18 local authorities, 6.78 local authority issues, 6.69 meeting with the judge, 6.28 minors’ jurisdiction, 6.63–6.87 non-urgent proceedings, 6.79–6.80 Official Solicitor, 6.29

764

Index High Court proceedings – contd orders, 6.32 parental issues, 6.68 parents, 6.77 participation of P, 6.26–6.30 parties applicants, 6.23–6.25 CAFCASS, 6.30 Official Solicitor, 6.29 participation of P, 6.26–6.30 participation of P generally, 6.26 meeting with judge, 6.28 necessity, 6.27 patient’s views, 6.28 position statements, 6.32 privacy, 6.82 procedural issues applicants, 6.23–6.25 bundles, 6.31 CAFCASS, 6.30 documentation, 6.31–6.32 hearings, 6.33 introduction, 6.19 meeting with the judge, 6.28 Official Solicitor, 6.29 orders, 6.32 participation of P, 6.26–6.30 parties, 6.23–6.30 position statements, 6.32 timing, 6.20–6.21 typing up of order, 6.34 urgency, 6.22 procedure rules, 6.65–6.86 publicity, 6.82 regional hearings, 6.64 relationship with CoP, 6.15 respondents body responsible for treatment or care, 6.75 children, 6.76 local authorities, 6.78 parents, 6.77 16 to 17 year olds, 6.16 subsequent directions hearings, 6.83 timing generally, 6.20–6.21 urgency, 6.22 treatment despite competent refusal, 6.70–6.74 typing up of order, 6.34 urgency, 6.22 urgent proceedings, 6.81 vulnerable adults jurisdiction, 6.88

Human Fertilisation and Embryology Act 1990 abortion, and, 9.5 adults lacking capacity, 11.22 birth mother, 11.32 Code of Practice, 11.9 conscientious objection, 11.31 consent, 11.16–11.17 directions, 11.8 generally, 11.3 introduction, 11.1 licensing, 11.14–11.15 posthumous gamete use, 11.34 preimplantation genetic screening, 11.35 welfare clause, 11.33 Human Fertilisation and Embryology Act 2008 generally, 11.4 introduction, 11.1 Human Fertilisation and Embryology Authority Chair’s Letters, 11.10–11.11 Chief Executive’s Letter, 11.12 Code of Practice, 11.9 directions, 11.8 guidance, 11.13 import of gametes and embryos, 11.19–11.21 introduction, 11.1 Human organ and tissue donation adults, 19.20 altruistic donation generally, 19.18 introduction, 19.9 approval by HTA, 19.17 ‘appropriate consent’, 19.13 authorised activities, 19.11 best interests, 19.16 chains, 19.9 children consent, 19.19 generally, 19.15 common law, 19.2 conclusion, 19.23 consent adults, 19.20 ‘appropriate consent’, 19.13 children, 19.19 HTA Codes, 19.13 introduction, 19.12 criminal offences removal from deceased person, 19.5 removal from living person, 19.8 directed donation generally, 19.18 introduction, 19.9

765

Index Human organ and tissue donation – contd domino donation, 19.10 generally, 19.1 genetically or emotionally related organ donation, 19.9, 19.18 Human Tissue Act 2004, under donations by living persons, 19.8–19.20 introduction, 19.3–19.7 preparatory steps taken before death, 19.22 preservation of organs after death, 19.21 Human Tissue Authority Codes consent, 19.13 introduction, 19.3 incompetent adults, 19.14 introduction, 19.1 lawful activities, 19.6 living persons, by approval by HTA, 19.17 authorised activities, 19.11 best interests, 19.16 children, 19.15 consent, 19.12–19.13, 19.19–19.20 incompetent adults, 19.14 introduction, 19.8 types, 19.9–19.10 non-directed donation, 19.9 paired donation generally, 19.18 introduction pooled donation generally, 19.18 introduction post-mortem donation, 19.18 preparatory steps taken before death, 19.22 preservation of organs after death, 19.21 principles, 19.3 schemes, 19.9 statistics, 19.1 transplantable material definition, 19.4 unlawful removal, 19.3 types, 19.9–19.10 whole-body donation, use and storage, 18.40 Human rights assisted reproduction, 11.1 decision-making for children introduction, 4.1 refusal of treatment, 4.11–4.12 healthcare provision court decisions, 8.27 general principles, 7.20–7.28

Human rights – contd healthcare provision – contd inhuman or degrading treatment or punishment, 7.23–7.25 life, 7.26–7.27 not to suffer discrimination, 7.28 respect for private and family life, 7.21–7.22 informed consent respect for private and family life, 1.24 religious objections to treatment of child, 14.20 restraint inhuman or degrading treatment, 5.18–5.22 respect for private and family life, 5.22 suicide balance to be struck, 17.31–17.32 duty to preserve life, 17.24–17.30 withholding or withdrawal of treatment ethical issues, 15.5 generally, 15.17–15.22 Lambert decision, 15.23–15.28 Human Tissue Act 2004 donations by living persons approval by HTA, 19.17 authorised activities, 19.11 best interests, 19.16 children, 19.15 consent, 19.12–19.13, 19.19–19.20 incompetent adults, 19.14 introduction, 19.8 types, 19.9–19.10 introduction, 19.3–19.7 preparatory steps taken before death, 19.22 preservation of organs after death, 19.21 Impairment capacity, 2.7 Import of gametes and embryos assisted reproduction, 11.19–11.21 Inability to make decisions capacity, 2.6 Incapacitated adults abortion best interests, 9.24 determining competence, 9.23 introduction, 9.22 use of force, 9.25 assisted reproduction, 11.22

766

Index Incapacitated adults – contd refusal of nutrition and hydration inherent jurisdiction of court, 13.23 Mental Capacity Act 2005, 13.24–13.28 procedure, 13.29–13.32 treatment not provided under MHA, 13.22 treatment under MHA 1983, 13.21 religious objections advance decisions, 14.14–14.16 general principle, 14.13 written declarations, 14.17 sterilisation availability of contraception, 10.12 best interests, 10.8–10.9 capacity, 10.7 counselling, 10.13 covert treatment, 10.19 education, 10.13 effect on standard of care, 10.16 freedom of association, 10.15 immediacy of risks, 10.18 male patients, 10.17–10.19 need for counselling, 10.13 pregnancy risk, 10.14 procedure, 10.20 prospect of attaining/recovering for relevant decision, 10.10 reduction of intrusion by statutory services, 10.15 risk of pregnancy, 10.14 risk of sexual contact, 10.11 standard of care, 10.16 Independent Mental Capacity Advocates (IMCAs) decision-making for adults, 3.22 Indirect discrimination healthcare provision, 7.31–7.33 Infant Life (Preservation) Act 1929 abortion, 9.3 Information sharing decision-making for adults, 3.25 Informed consent See also Consent alternative forms of treatment, 1.27 answering questions, 1.26 capacity, and, 2.10 common law, 1.20 delegation, 1.25 duty of care, 1.20–1.23 healthcare provision, 7.3 known comparative outcomes, 1.28–1.29 respect for private and family life, 1.24 responding to needs of patient, 1.22 test of materiality, 1.21 trespass to the person, 1.19

Inherent jurisdiction decision-making for adults, 3.42–3.44 Inhuman or degrading treatment or punishment healthcare provision, 7.23–7.25 restraint, 5.18–5.22 Injunctions refusal of nutrition and hydration, 13.32 Integrated Care Systems (ICS) healthcare provision, 8.4 Intention consent, 1.13 Intolerability decision-making for adults, 3.29 Involuntary feeding adults competent, 13.16–13.20 injunctions, 13.32 lacking capacity to consent, 13.21–13.28 procedure, 13.29–13.32 children aged 16 and 17, 13.4 deprivation of liberty, 13.7–13.14 effect of disorder on competence, 13.5 exercise of court’s jurisdiction, 13.5 general principles, 13.3–13.6 Gillick competence, 13.5 procedure, 13.15 under age of 16, 13.3 competent adults detention under MHA, 13.17–13.20 general rule, 13.16 conclusion, 13.33 deprivation of liberty of children admission under MHA 1983, 13.8 informal admission for treatment of mental disorder, 13.9 inherent jurisdiction, 13.13 introduction, 13.7 Mental Capacity Act 2005, 13.14 parental authority, 13.10–13.12 incapacitated adults inherent jurisdiction of court, 13.23 Mental Capacity Act 2005, 13.24–13.28 procedure, 13.29–13.32 treatment not provided under MHA, 13.22 treatment under MHA 1983, 13.21 introduction, 13.1 NICE Clinical Knowledge Summary, 13.2

767

Index Involuntary feeding – contd procedure Mental Capacity Act 2005, 13.30 MHA 1983, 13.30 need for application, 13.29 preparation, 13.31 restraint and force-feeding, 5.28 suicide, 17.38–17.43 Irrational decisions capacity, 2.16 IVF treatment See also Assisted reproduction generally, 11.1 Judicial review healthcare provision, 8.36 ‘Lack of capacity’ See also Capacity generally, 2.6 Liberty Protection Safeguards (LPS) See also Deprivation of liberty generally, 5.105–5.114 introduction, 5.3 Licensing assisted reproduction conditions, 11.15 generally, 11.14 Life-sustaining treatment decision-making for children ‘balance sheet’, 4.40 dignity, 4.39 pain, 4.38 preservation of life, 4.37 provision, 4.36 withdrawing, 4.35 withholding, 4.34 Limited proxy of consent for others capacity, 2.3 decision-making for adults, 3.9 Litigation access to healthcare applicable jurisdiction, 8.24–8.25 clinically effective, 8.34 equality law, 8.29 exceptionality, 8.30–8.33 human rights, 8.27 obtaining and interpreting evidence, 8.35 policy and guidance challenges, 8.28 requiring doctors/NHS bodies to provide treatment, 8.23 spending money on particular treatment, 8.26 adult patients, 6.9–6.10

Litigation – contd applicants generally, 6.23–6.24 purpose, 6.25 CAFCASS, 6.30 child patients, 6.11–6.12 conclusion, 6.89 considerations adult patients, 6.9–6.10 child patients, 6.11–6z ‘deprivation of liberty’, 6.8 DNAR, 6.10 introduction, 6.2–6.4 Practice Guidance, 6.5–6.7 Court of Protection age thresholds, 6.17 appeals, 6.62 commencement of proceedings, 6.50–6.57 costs, 6.60–6.61 directions, 6.58 final hearings, 6.59 first hearing, 6.58 general approach, 6.38 introduction, 6.35 judges, 6.36 jurisdiction, 6.14–6.18 lack of jurisdiction, 6.15 level of judge, 6.49 litigation friendfs, 6.44–6.46 location, 6.36 non-urgent proceedings, 6.50–6.51 notification of proceedings, 6.48 permission to apply, 6.47 powers, 6.39 pre-action considerations, 6.43–6.49 pre-action procedure, 6.43 privacy, 6.40–6.42 procedural issues, 6.19–6.34 procedure rules, 6.37 publicity, 6.40–6.42 respondents, 6.48 16 to 17 year olds, 6.16 subsequent directions hearings, 6.58 summary, 6.18 urgent proceedings, 6.52–6.57 decision-making for children generally, 4.41 practical tips, 4.42 ‘deprivation of liberty’, 6.8 DNAR, 6.10 healthcare provision applicable jurisdiction, 8.24–8.25 clinically effective, 8.34 equality law, 8.29 exceptionality, 8.30–8.33 human rights, 8.27

768

Index Litigation – contd healthcare provision – contd obtaining and interpreting evidence, 8.35 policy and guidance challenges, 8.28 requiring doctors/NHS bodies to provide treatment, 8.23 spending money on particular treatment, 8.26 High Court appeals, 6.87 body responsible for treatment or care, 6.75 children, 6.76 commencement of proceedings, 6.79–6.81 costs, 6.86 final hearings, 6.84 first hearings, 6.83 general cases, 6.66–6.67 generally, 6.63 hearings, 6.83–6.85 inherent jurisdiction, 6.88 jurisdiction, 6.13 local authorities, 6.78 local authority issues, 6.69 minors’ jurisdiction, 6.63–6.87 non-urgent proceedings, 6.79–6.80 parental issues, 6.68 parents, 6.77 privacy, 6.82 procedural issues, 6.19–6.34 procedure rules, 6.65–6.86 publicity, 6.82 regional hearings, 6.64 relationship with CoP, 6.15 respondents, 6.75–6.78 16 to 17 year olds, 6.16 subsequent directions hearings, 6.83 treatment despite competent refusal, 6.70–6.74 urgent proceedings, 6.81 vulnerable adults jurisdiction, 6.88 identifying appropriate court Court of Protection, 6.14–6.18 introduction, 6.13 introduction, 6.1 Official Solicitor, 6.29 parties applicants, 6.23–6.25 CAFCASS, 6.30 Official Solicitor, 6.29 participation of P, 6.26–6.30

Litigation – contd participation of P generally, 6.26 meeting with judge, 6.28 necessity, 6.27 patient’s views, 6.28 Practice Guidance, 6.5–6.7 procedural issues applicants, 6.23–6.25 bundles, 6.31 CAFCASS, 6.29 documentation, 6.31–6.32 hearings, 6.33 introduction, 6.19 meeting with the judge, 6.28 Official Solicitor, 6.29 orders, 6.32 participation of P, 6.26–6.30 parties, 6.23–6.30 position statements, 6.32 timing, 6.20–6.21 typing up of order, 6.34 urgency, 6.22 public law, 6.19 Litigation friends generally, 6.26 Living wills See also Advance decisions generally, 2.28 Local authorities healthcare provision, 8.19–8.22 Materiality informed consent, 1.21 Mediation withholding or withdrawal of treatment, 15.85 Minimally conscious state (MCS) See also Permanent vegetative state best interests generally, 15.30–15.39 introduction, 15.29 children absence of pain, 15.75 dignity, 15.76–15.80 introduction, 15.71 mediation, 15.85 medical expert advice, 15.83 procedure, 15.81–15.84 social media, 15.82 welfare of child, 15.72–15.74 conclusion, 15.86 court approval advance decisions of patient, 15.58 applications, 15.59–15.67 circumstances in which required, 15.56–15.57

769

Index Minimally conscious state (MCS) – contd court approval – contd confidentiality, 15.60 emergency applications, 15.68– 15.69 evidence, 15.61–15.67 introduction, 15.55 prior consent of patient, 15.58 procedure, 15.59–15.69 diagnosis, 15.51–15.52 doctors disagreeing in principle, 15.70 ethical issues, 15.6 introduction, 15.6 legal principles, 15.29–15.39 meaning, 15.3 mediation, 15.85 overview, 15.3 role of the family, 15.52–15.53 terminology, 15.2 Minors See Children Multiple foetuses abortion, 9.7 Offences Against the Person Act 1861 abortion, 9.2 National Health Service (NHS) See also Healthcare provision constitution, 8.16 introdution, 8.2 Primary Care choice of GP practice, 7.10 face-to-face consultations, 7.12 preference for particular GP, 7.11 proposed changes, 8.4 Secondary Care choice by CCG, 7.16 choice of nature of care subsequently provided, 7.15 eligibility, 7.13–7.14 personal health budget, 7.17–7.19 status, 8.2 structure, 8.3 National Institute for Health and Care Excellence (NICE) approval of drugs and treatments, 8.17 refusal of nutrition and hydration, 13.2 Necessity decision-making for adults, 3.11 Needle phobias pregnancy, 5.10 NHS Constitution choice of provision, 7.9 generally, 8.16

NHS England duties, 8.6 individual decision-making, 8.18 introdution, 8.3 NHS Primary Care choice of GP practice, 7.10 face-to-face consultations, 7.12 preference for particular GP, 7.11 NHE Secondary Care choice by CCG, 7.16 choice of nature of care subsequently provided, 7.15 eligibility, 7.13–7.14 personal health budget, 7.17–7.19 NICE Clinical Knowledge Summary refusal of nutrition and hydration, 13.2 Obstetrics See Pregnancies Offences Against the Person Act 1861 abortion, 9.2 Office for Health Improvement and Disparities healthcare provision, 8.3 Official Solicitor, 6.12 costs, 6.36 Organ and tissue donation adults, 19.20 altruistic donation generally, 19.18 introduction, 19.9 approval by HTA, 19.17 ‘appropriate consent’, 19.13 authorised activities, 19.11 best interests, 19.16 chains, 19.9 children consent, 19.19 generally, 19.15 common law, 19.2 conclusion, 19.23 consent adults, 19.20 ‘appropriate consent’, 19.13 children, 19.19 HTA Codes, 19.13 introduction, 19.12 criminal offences removal from deceased person, 19.5 removal from living person, 19.8 directed donation generally, 19.18 introduction, 19.9 domino donation, 19.10 generally, 19.1 genetically or emotionally related organ donation, 19.9, 19.18

770

Index Organ and tissue donation – contd healthcare provision, 7.8 Human Tissue Act 2004, under donations by living persons, 19.8–19.20 introduction, 19.3–19.7 preparatory steps taken before death, 19.22 preservation of organs after death, 19.21 Human Tissue Authority Codes consent, 19.13 introduction, 19.3 incompetent adults, 19.14 introduction, 19.1 lawful activities, 19.6 living persons, by approval by HTA, 19.17 authorised activities, 19.11 best interests, 19.16 children, 19.15 consent, 19.12–19.13, 19.19–19.20 incompetent adults, 19.14 introduction, 19.8 types, 19.9–19.10 non-directed donation, 19.9 paired donation generally, 19.18 introduction pooled donation generally, 19.18 introduction post-mortem donation, 19.18 preparatory steps taken before death, 19.22 preservation of organs after death, 19.21 principles, 19.3 schemes, 19.9 statistics, 19.1 sterilisation, 10.3 transplantable material definition, 19.4 unlawful removal, 19.3 types, 19.9–19.10 whole-body donation, use and storage, 18.40 Pain decision-making for children, 4.38 Parents decision-making for children court application required, 4.17 disputes between parents, 4.18–4.19 local authorities, 4.19 power to consent, 4.16–4.17 defendants, as, 6.49

Parental orders surrogacy, 11.46–11.52 Persistent vegetative state (PVS) act and omission issues, 15.15 advance decisions of patient, 15.58 applications to withhold treatment confidentiality, 15.60 emergency, in, 15.68–15.69 evidence, 15.61–15.67 introduction, 15.59 assault, 15.16 best interests Bland decision, 15.9–15.14 effect of determination, 15.16 human rights, 15.17–15.22 introduction, 15.6–15.7 overview, 15.3 Bland decision extension to other cases, 15.12–15.14 generally, 15.9–15.11 Bolam reasonableness, 15.11 capacity, 15.3 children absence of pain, 15.75 dignity, 15.76–15.80 introduction, 15.71 mediation, 15.85 medical expert advice, 15.83 procedure, 15.81–15.84 social media, 15.82 welfare of child, 15.72–15.74 clinically assisted nutrition and hydration, 15.4 conclusion, 15.86 confidentiality, 15.60 continuing treatment as assault, 15.16 court approval to withhold treatment advance decisions of patient, 15.58 applications, 15.59–15.67 circumstances in which required, 15.56–15.57 confidentiality, 15.60 emergency applications, 15.68–15.69 evidence, 15.61–15.67 introduction, 15.55 prior consent of patient, 15.58 procedure, 15.59–15.69 diagnosis current approach, 15.44–15.48 generally, 15.40–15.43 ‘permanent’, 15.49–15.50 doctors disagreeing in principle, 15.70 emergency applications to withhold treatment, 15.68–15.69

771

Index Persistent vegetative state (PVS) – contd ethical issues, 15.4–15.7 evidence, 15.61–15.67 human rights ethical issues, 15.5 generally, 15.17–15.22 Lambert decision, 15.23–15.28 introduction, 15.3–15.7 Lambert decision, 15.23–15.27 legal principles act and omission issues, 15.15 assault, 15.16 Bland decision, 15.9–15.14 human rights, 15.17–15.28 introduction, 15.8 meaning, 15.3 mediation, 15.85 overview, 15.1 permanence, 15.49–15.51 pregnancies, and, 12.25 prior consent of patient, 15.58 procedure for approval to withhold treatment advance decisions of patient, 15.58 applications, 15.59–15.67 circumstances in which required, 15.56–15.57 confidentiality, 15.60 emergency applications, 15.68–15.69 evidence, 15.61–15.67 introduction, 15.55 prior consent of patient, 15.58 RCOP Guidelines diagnosis, 15.40 evaluation, 15.7 terminology, 15.2 role of the family, 15.52–15.53 SMART assessment, 15.7 terminology, 15.2 WHIM assessment, 15.7 Personal health budget healthcare provision, 7.17–7.19 Persons from other countries/other parts of UK healthcare provision access to NHS, 8.14–8.15 charges for healthcare, 8.11–8.13 introduction, 8.10 Posthumous gamete use assisted reproduction, 11.34 Pregnancies See also Abortion advance decisions guidelines, 12.24 procedure for obstetric units, 12.32 advance planning, 12.21

Pregnancies – contd advice about possible treatment, 12.29 assessment of capacity, 12.28 caesarean sections capacity, 12.8 competent adults, 12.5–12.6 generally, 12.4 interests of the foetus, 12.10 procedure, 12.11 Re MB decision, 12.7–12.11 Re S decision, 12.5 reasonable force, 12.9 St George’s Healthcare NHS Trust v S, 12.12 comatose women, 12.25 compliance with court guidelines, 12.37 conclusions, 12.40 congenital disabilities, 12.3 continual advice to patient, 12.38 contingency planning for court application, 12.34–12.36 contingent declarations, 12.22–12.26 Court of Appeal guidelines introduction, 12.13 MCA in force, with, 12.14–12.15 Court of Protection guidelines advance decisions, 12.24 advance planning, 12.21 comatose women, 12.25 contingent declarations, 12.22–12.26 delay, 12.20 evidence, 12.17–12.18 forcible transfer to hospital for delivery, 12.26 NHS Trust (1 and 2) v FG, 12.16 notifying the patient, 12.19 persistent vegetative state, 12.25 procedure, 12.17–12.18 timing of applications, 12.20 delay, 12.20 discussion about possible loss of capacity, 12.30 evidence, 12.17–12.18 foetal rights in obstetrics, 12.2 forcible transfer to hospital for delivery, 12.26 interests of the foetus, 12.10 introduction, 12.2 legal background, 12.2–12.12 liaison between teams, 12.31 notifying the patient, 12.19 patient rights in obstetrics, 12.2 persistent vegetative state, 12.25

772

Index Pregnancies – contd procedure for obstetric units advance decisions, 12.32 advice about possible treatment, 12.29 assessment of capacity, 12.28 compliance with court guidelines, 12.37 continual advice to patient, 12.38 contingency planning for court application, 12.34–12.36 discussion about possible loss of capacity, 12.30 introduction, 12.27 liaison between teams, 12.31 referral and assessment where capacity in doubt, 12.33 procedure for patients, 12.39 psychiatric referral and assessment where capacity in doubt, 12.33 RCOG Guidelines, 12.2 reasonable force, 12.9 sterilisation, and, 10.14 Preimplantation genetic screening assisted reproduction, 11.35–11.40 Preservation of life decision-making for children, 4.37 Primary care See also Healthcare provision choice of GP practice, 7.10 face-to-face consultations, 7.12 preference for particular GP, 7.11 ‘Primary health need’ healthcare provision, 8.19–8.21 Prior consent withholding or withdrawal of treatment, 15.58 Privacy and publicity Court of Protection proceedings, 6.25 High Court proceedings, children, 6.53 Private and family life decision-making for adults, 3.36 healthcare provision, 7.21–7.22 informed consent, 1.24 restraint, 5.22 Private treatment healthcare provision, 7.2 Prolonged disorders of consciousness (PDOC) See also Withdrawal of treatment generally, 15.2 Proportionality restraint, 5.16–5.17 Proposal to treat alternative forms of treatment, 1.5 communication, 1.10–1.12 compelling doctor to treat, 1.6

Proposal to treat – contd demand for treatment by patient, 1.9 formulation, 1.3 irrational decisions by care providers, 1.7 resources, 1.8 risks of treatment, 1.4 Provision of services healthcare provision, 7.30 Proxy of consent for others capacity, 2.3 decision-making for adults, 3.9 P’s wishes and feelings, beliefs and values decision-making for adults, 3.21 Public health healthcare provision, 8.22 Public health bodies healthcare provision, 8.3 Public law issues courts, and, 6.9 Public sector equality duty healthcare provision, 7.36 Reasonable adustments for disability healthcare provision, 7.34 Reasonable force pregnancies, 12.9 Reasonable requirements healthcare provision, 8.7 Records advance decisions, 2.42 capacity assessments, 2.20 decision against medical advice on religious grounds, 14.12 Refusal of nutrition and hydration See also Refusal of treament adults competent, 13.16–13.20 injunctions, 13.32 lacking capacity to consent, 13.21–13.28 procedure, 13.29–13.32 children aged 16 and 17, 13.4 deprivation of liberty, 13.7–13.14 effect of disorder on competence, 13.5 exercise of court’s jurisdiction, 13.5 general principles, 13.3–13.6 Gillick competence, 13.5 procedure, 13.15 under age of 16, 13.3 competent adults detention under MHA, 13.17–13.20 general rule, 13.16 conclusion, 13.33

773

Index Refusal of nutrition and hydration – contd deprivation of liberty of children admission under MHA 1983, 13.8 informal admission for treatment of mental disorder, 13.9 inherent jurisdiction, 13.13 introduction, 13.7 Mental Capacity Act 2005, 13.14 parental authority, 13.10–13.12 incapacitated adults inherent jurisdiction of court, 13.23 Mental Capacity Act 2005, 13.24–13.28 procedure, 13.29–13.32 treatment not provided under MHA, 13.22 treatment under MHA 1983, 13.21 introduction, 13.1 NICE Clinical Knowledge Summary, 13.2 procedure Mental Capacity Act 2005, 13.30 MHA 1983, 13.30 need for application, 13.29 preparation, 13.31 restraint and force-feeding, 5.28 suicide, 17.38–17.43 Refusal of treatment capacity acceleration of death, 2.28–2.29 interests of viable foetus, 2.30 decision-making for children compulsory treatment, 4.11–4.12 general rule, 4.10–4.13 Gillick competence, 4.14 human rights, 4.11–4.12 introduction, 4.9 Re X (A Child) (No 2), 4.13 16 and 17 years of age, 4.14 under 16, 4.15 Religious objections See also Religious observance adults competent, 14.2–14.12 incapacitated, 14.13–14.19 advance decisions effect of uncertainty, 14.16 generally, 14.14 reported oral, 14.15 children best interests, 14.21 ‘ceiling of care’ cases, 14.30 concluding comment, 14.25 consent of parent, 14.20 Fixsler decision, 14.24–14.29 general principle, 14.20

Religious objections – contd children – contd ‘Gillick competent’ child, 14.31 human rights, 14.20 life-limiting conditions, 14.22–14.30 procedural issues, 14.33–14.36 Raqeeb decision, 14.23 Re X (No 2) decision, 14.32 rolling orders, 14.32 withdrawal of treatment, 14.22–14.30 circumstances, 14.1 close friends’ role, 14.11 competent adults ability to understand information, 14.6 ability to use or weigh information, 14.7 advice, 14.8 close friends’ role, 14.11 concluding comment, 14.25 confirmation patient has capacity, 14.5 general principle, 14.2 power to treat under MHA, s 63, 14.3 recording of decision against medical advice, 14.12 relatives’ role, 14.11 scope of decision, 14.10 steps to be taken, 14.4–14.7 undue influence, 14.9 conclusion, 14.37 incapacitated adults advance decisions, 14.14–14.16 general principle, 14.13 written declarations, 14.17 introduction, 14.1 power to treat under MHA, s 63, 14.3 procedural issues anticipation, 14.33 change of circumstance, 14.36 consultation, 14.34 evidence, 14.35 notice, 14.34 relatives’ role, 14.11 written declarations, 14.17 Religious observance See also Religious objections assumptions as to beliefs, 14.19 incapacitated adults, 14.18 introduction, 14.1 Respect for private and family life decision-making for adults, 3.36 healthcare provision, 7.21–7.22 informed consent, 1.24 restraint, 5.22

774

Index Respect for private and family life – contd healthcare provision, 7.21–7.22 informed consent, 1.24 restraint, 5.22 Right for wishes of patient decision-making for adults case law, 3.5–3.8 generally, 3.3 MHA 1983 s.63 exception, 3.4 Restraint authorisation under MCA generally, 5.11–5.14 introduction, 5.6 limits, 5.14 necessity, 5.15 capacity, 5.9–5.10 common law principles, 5.4 covert medication, 5.23 deception, 5.23 definition, 5.8 degree of infringement of liberty, 5.7 generally, 5.8–5.10 human rights inhuman or degrading treatment, 5.18–5.22 respect for private and family life, 5.22 inhuman or degrading treatment, 5.18–5.22 introduction, 5.1–5.7 lawfulness, 5.1 meaning, 5.8 necessity, 5.15 proportionality, 5.16–5.17 reasonable and proportionate, 5.2 rights to respect for private and family life, 5.22 statutory basis, 5.3 statutory defence generally, 5.11–5.13 limits, 5.14 trespass to the person, and, 5.9 Right to die challenges to ECHR, 16.5–16.11 current law, 16.19–16.21 DPP Guidance, 16.2 end of life care, 16.17–16.18 future changes, 16.22–16.23 introduction, 16.1–16.3 legislative changes, 16.12–16.16 ‘locked-in’ syndrome, 16.4 present context, 16.4 public interest prosecutions, 16.2 statutory proposals, 16.12–16.16 Right to life healthcare provision, 7.26–7.27

Right to respect for private and family life decision-making for adults, 3.36 healthcare provision, 7.21–7.22 informed consent, 1.24 restraint, 5.22 Risks informed consent alternative forms of treatment, 1.27 answering questions, 1.26 common law, 1.20 delegation, 1.25 duty of care, 1.20–1.23 healthcare provision, 7.3 known comparative outcomes, 1.28–1.29 respect for private and family life, 1.24 responding to needs of patient, 1.22 test of materiality, 1.21 trespass to the person, 1.19 Rolling orders religious objections to treatment of child, 14.32 Royal College of Gynaecologists (RCOG) guidelines pregnancies, 12.2 Royal College of Physicians (RCOP) guidelines withholding or withdrawal of treatment diagnosis, 15.40 evaluation, 15.7 terminology, 15.2 Sanctity of life decision-making for adults, 3.30 Second opinions healthcare provision, 7.4 Secondary care See also Healthcare provision choice by CCG, 7.16 choice of nature of care subsequently provided, 7.15 eligibility, 7.13–7.14 personal health budget, 7.17–7.19 Secretary of State healthcare provision, 8.5 Sexual contact sterilisation, 10.11 Sexual health services healthcare provision, 8.22 Sharing information decision-making for adults, 3.25 SMART assessment persistent vegetative state, 15.7

775

Index Social care healthcare provision, 8.19–8.21 Standard of care sterilisation, 10.16 State of mind consent comprehension, 1.14 intention, 1.13 Sterilisation adults competent, 10.6 incapacitated, 10.7–10.19 adults lacking capacity availability of contraception, 10.12 best interests, 10.8–10.9 capacity, 10.7 counselling, 10.13 covert treatment, 10.19 education, 10.13 effect on standard of care, 10.16 freedom of association, 10.15 immediacy of risks, 10.18 male patients, 10.17–10.19 need for counselling, 10.13 pregnancy risk, 10.14 procedure, 10.20 prospect of attaining/recovering for relevant decision, 10.10 reduction of intrusion by statutory services, 10.15 risk of pregnancy, 10.14 risk of sexual contact, 10.11 standard of care, effect on, 10.16 availability of contraception, 10.12 best interests children, 10.23 incapacitated adults, 10.8–10.9 children best interests, 10.23 general principle, 10.21–10.22 learning disabilities, 10.22 no learning disabilities, 10.21 procedure, 10.24 competent adults, 10.6 competent patients general rule, 10.2 informed consent, 10.3 procedure, 10.5 role of partner/spouse, 10.4 conclusion, 10.25 counselling need, 10.13 covert treatment, 10.19 education need, 10.13 freedom of association, 10.15 immediacy of risks, 10.18

Sterilisation – contd incapacitated adults availability of contraception, 10.12 best interests, 10.8–10.9 capacity, 10.7 counselling, 10.13 covert treatment, 10.19 education, 10.13 effect on standard of care, 10.16 freedom of association, 10.15 immediacy of risks, 10.18 male patients, 10.17–10.19 need for counselling, 10.13 pregnancy risk, 10.14 procedure, 10.20 prospect of attaining/recovering for relevant decision, 10.10 reduction of intrusion by statutory services, 10.15 risk of pregnancy, 10.14 risk of sexual contact, 10.11 standard of care, 10.16 informed consent, 10.3 introduction, 10.1 male patients, 10.17–10.19 pregnancy risk, 10.14 prospect of attaining/recovering for relevant decision, 10.10 reduction of intrusion by statutory services, 10.15 risk of pregnancy, 10.14 risk of sexual contact, 10.11 role of partner/spouse, 10.4 standard of care, 10.16 Storage periods assisted reproduction extension, 11.24 generally, 11.23 Suicide approach to treatment, 17.47 autonomy generally, 17.10–17.14 liability for failing to act, 17.15– 17.23 balance to be struck, 17.31–17.32 capacity, 17.10–17.14 compulsorily detained patients, 17.37–17.46 conclusion, 17.48 consent, and, 17.10 definition an act, 17.3 generally, 17.2 intention to act, 17.4 refining, 17.7–17.9 understanding of likely consequences, 17.5

776

Index Suicide – contd duty to preserve life, 17.24–17.30 European Convention on Human Rights balance to be struck, 17.31–17.32 duty to preserve life, 17.24–17.30 failure to treat or feed, 17.7–17.9 force-feeding, and, 17.38–17.43 general principles, 17.10–17.14 guidance on approach to treatment, 17.47 intention to act, 17.4 introduction, 17.1 liability for failing to act, 17.15–17.23 practical problems, 17.33–17.36 Suicide Act 1961, 17.6 third party liability, 17.15–17.23 understanding of likely consequences, 17.5 Surrogacy counselling, 11.43 generally, 11.41–11.42 introduction, 11.1 parental orders, 11.46–11.52 reforms, 11.53 regulatory regime, 11.7 welfare clause, 11.43–11.45 Temporary incapacity See also Capacity generally, 2.22 Termination of pregnancy Abortion Act 1967 compliance with conditions, 9.6–9.18 introduction, 9.4 patient’s consent, 9.19–9.33 certification of medical opinion, 9.10 children, 9.21 competent adults, 9.20 conclusion, 9.34 conditions certification of medical opinion, 9.10 conscientious objection, 9.6 grounds, 9.11–9.17 multiple foetuses, 9.7 place of treatment, 9.18 procedure performed by medical practitioner, 9.9 risk of injury to mother, 9.11–9.14 risk to life of pregnant woman, 9.16 substantial risk of child being seriously handicapped, 9.17 successful procedure, 9.8 termination necessary to prevent grave permanent injury, 9.15

Termination of pregnancy – contd conscientious objection, 9.6 consent of patient children, 9.21 competent adults, 9.20 evidence, 9.29–9.33 incompetent adults, 9.22–9.28 procedure, 9.29–9.33 grounds risk of injury to mother, 9.11–9.14 risk to life of pregnant woman, 9.16 substantial risk of child being seriously handicapped, 9.17 termination necessary to prevent grave injury, 9.15 Human Fertilisation and Embryology Act 1990, 9.5 incompetent adults best interests, 9.24 determining competence, 9.23 introduction, 9.22 use of force, 9.25 Infant Life (Preservation) Act 1929, 9.3 multiple foetuses, 9.7 Offences Against the Person Act 1861, 9.2 place of treatment, 9.18 procedure performed by medical practitioner, 9.9 procedure to obtain consent considerations for court, 9.28 making an application, 9.26 timing of application, 9.27 risk of injury to mother greater than if pregnancy continues, 9.14 introduction, 9.11 mental or physical health, 9.13 pregnancy less than 24 weeks, 9.12 risk to life of pregnant woman, 9.16 statutory framework, 9.1–9.5 substantial risk of child being seriously handicapped, 9.17 successful procedure, 9.8 termination necessary to prevent grave permanent injury, 9.15 Tissue and organ donation adults, 19.20 altruistic donation generally, 19.18 introduction, 19.9 approval by HTA, 19.17 ‘appropriate consent’, 19.13 authorised activities, 19.11 best interests, 19.16 chains, 19.9

777

Index Tissue and organ donation – contd children consent, 19.19 generally, 19.15 common law, 19.2 conclusion, 19.23 consent adults, 19.20 ‘appropriate consent’, 19.13 children, 19.19 HTA Codes, 19.13 introduction, 19.12 criminal offences removal from deceased person, 19.5 removal from living person, 19.8 directed donation generally, 19.18 introduction, 19.9 domino donation, 19.10 generally, 19.1 genetically or emotionally related organ donation, 19.9, 19.18 healthcare provision, 7.8 Human Tissue Act 2004, under donations by living persons, 19.8–19.20 introduction, 19.3–19.7 preparatory steps taken before death, 19.22 preservation of organs after death, 19.21 Human Tissue Authority Codes consent, 19.13 introduction, 19.3 incompetent adults, 19.14 introduction, 19.1 lawful activities, 19.6 living persons, by approval by HTA, 19.17 authorised activities, 19.11 best interests, 19.16 children, 19.15 consent, 19.12–19.13, 19.19–19.20 incompetent adults, 19.14 introduction, 19.8 types, 19.9–19.10 non-directed donation, 19.9 paired donation generally, 19.18 introduction pooled donation generally, 19.18 introduction post-mortem donation, 19.18 preparatory steps taken before death, 19.22

Tissue and organ donation – contd preservation of organs after death, 19.21 principles, 19.3 schemes, 19.9 statistics, 19.1 sterilisation, 10.3 transplantable material definition, 19.4 unlawful removal, 19.3 types, 19.9–19.10 whole-body donation, use and storage, 18.40 Trespass to the person informed consent, 1.19 restraint, 5.9 UK Health Security Agency healthcare provision, 8.3 Undue influence consent, 1.32 religious objections to treatment, 14.9 Vegetative state children absence of pain, 15.75 dignity, 15.76–15.80 introduction, 15.71 mediation, 15.85 medical expert advice, 15.83 procedure, 15.81–15.84 social media, 15.82 welfare of child, 15.72–15.74 conclusion, 15.86 court approval advance decisions of patient, 15.58 applications, 15.59–15.67 circumstances in which required, 15.56–15.57 confidentiality, 15.60 emergency applications, 15.68– 15.69 evidence, 15.61–15.67 introduction, 15.55 prior consent of patient, 15.58 procedure, 15.59–15.69 diagnosis, 15.40–15.52 doctors disagreeing in principle, 15.70 introduction, 15.1–15.7 legal principles act and omission issues, 15.15 assault, 15.16 Bland decision, 15.9–15.14 human rights, 15.17–15.27 introduction, 15.8 mediation, 15.85 overview, 15.2

778

Index Vegetative state – contd permanent vegetative state, 15.49–15.51 persistent vegetative state diagnosis, 15.40–15.52 introduction, 15.3–15.7 legal principles, 15.8–15.27 overview, 15.2 permanence, 15.49–15.51 role of the family, 15.52–15.53 Veto by clinician healthcare provision, 7.5 Viable foetus See also Foetal rights refusal of treatment, 2.30 Vulnerable adults decision-making for adults, 3.42 High Court’s inherent jurisdiction, 6.58 Welfare clause assisted reproduction, 11.33 surrogacy, 11.43–11.45 WHIM assessment persistent vegetative state, 15.7 Wishes and feelings, beliefs and values decision-making for adults, 3.21 Wishes of patient decision-making for adults case law, 3.5–3.8 generally, 3.3 MHA 1983 s.63 exception, 3.4 Withdrawal of treatment See also Minimally conscious state; Persistent vegetative state children, from absence of pain, 15.75 dignity, 15.76–15.80 introduction, 15.71 mediation, 15.85 medical expert advice, 15.83 procedure, 15.81–15.84 social media, 15.82 welfare of child, 15.72–15.74 conclusion, 15.86 court approval advance decisions of patient, 15.58 applications, 15.59–15.67 circumstances in which required, 15.56–15.57 confidentiality, 15.60

Withdrawal of treatment – contd court approval – contd emergency applications, 15.68–15.69 evidence, 15.61–15.67 introduction, 15.55 prior consent of patient, 15.58 procedure, 15.59–15.69 decision-making for children, 4.35 doctors disagreeing in principle, 15.70 introduction, 15.1–15.7 mediation, 15.85 minimally conscious state diagnosis, 15.51–15.52 introduction, 15.6 legal principles, 15.29–15.39 overview, 15.2 permanent vegetative state, 15.49–15.51 persistent vegetative state diagnosis, 15.40–15.52 introduction, 15.3–15.7 legal principles, 15.8–15.27 overview, 15.2 permanence, 15.49–15.51 prolonged disorders of consciousness, 15.2 religious objections to treatment of child, 14.22–14.30 role of the family, 15.52–15.53 Withholding treatment See also Withdrawal of treatment children, from, 15.71–15.85 conclusion, 15.86 court approval, 15.55–15.69 decision-making for children, 4.34 diagnosis, 15.40–15.52 doctors disagreeing in principle, 15.70 introduction, 15.1–15.7 mediation, 15.85 minimally conscious state, 15.29–15.39 permanent vegetative state, 15.49–15.51 persistent vegetative state, 15.8–15.28 prolonged disorders of consciousness, 15.2 role of the family, 15.52–15.53 Written declarations religious objections, 14.17

779

780