Thorny Issues in Clinical Ethics Consultation: North American and European Perspectives (Philosophy and Medicine, 143) 3030919153, 9783030919153

Table of contents :
Preface
Contents
Acronyms
Part I: Introduction to Part I: History and Development of the Formation and Training of Clinical Ethics Consultants
Chapter 1: A Brief Introduction to the History of Clinical Ethics
1.1 Objectives
1.2 The Birth of Clinical Ethics
1.3 The Professionalization of Clinical Ethics
1.4 1970s: Patients´ Rights Affirmed, But Ignored!
1.5 1980s: HECs and Ethics Consultation Spread
1.6 1990s: A Crisis of Confidence in Clinical Ethics Consultation
1.7 2000s: A Crisis of Confidence
1.8 2010-2020: Clinical Ethics Consultation Professionalizes
1.9 The Past as Prologue
References
Chapter 2: Clinical Ethics Consultation: Current Standards in the Field
2.1 Objectives
2.2 Case
2.3 Defining Standards
2.4 CEC & Ethics Committees: Historical Milestones
2.5 CEC Standards in the U.S.: One Size Fits All?
2.6 Evaluating CEC Quality & Its Impact on Evolving Standards
References
Chapter 3: What Does Competency Have to Do with It? Ethics Fellowship Training and the Experience of a Hospital-Based Program ...
3.1 Objectives
3.2 Case One
3.3 Introduction: A Look at Training in Clinical Ethics
3.4 The Apprenticeship Model
3.5 The History of Competency-Based Education in Medicine
3.6 CBE in Clinical Ethics
3.7 Specifics, Concerns, and Next Steps
References
Chapter 4: Models of Training for Clinical Ethics Consultants and Approaches to Quality Assessment and Improvement
4.1 Objectives
4.2 Introduction
4.3 Classic Pathways into Clinical Ethics Consultation
4.4 The Need for Systematic Training of Clinical Ethics Consultants
4.5 The Ideal Training Models for Clinical Ethics Consultants
4.6 Specific Models of Training and Assessment
4.7 Relation to Quality Assessment and Quality Improvement
References
Chapter 5: New Approaches for Advancing Ethics Quality: Assessment of the Ethics Consultation Record
5.1 Objectives
5.2 Case One
5.3 Conclusion
References
Chapter 6: Historical Development of Clinical Ethics Consultation in Europe
6.1 Objectives
6.2 Case Example (From the Late 1990s)
6.3 How It All Began in Europe
6.4 Pioneers´ Work and Influence
6.5 Variety and Commonalities of European Approaches
6.6 Conclusions
References
Chapter 7: Clinical Ethics Consultation in Germany: History, Current Status and Models of Training
7.1 Objective
7.2 Case Study
7.3 Development of Clinical Ethics Consultation in Germany
7.4 National Standards for Ethics Committees
7.5 Recommendations and Guidelines for Ethics Consultation Services
7.6 Curriculum for Ethics Consultation in Healthcare
7.7 National Training Programs for Ethics Consultation
7.8 Certification of Ethics Consultants
7.9 Ethics Consultation in Out-Patient Facilities and Nursing Homes
7.10 Conclusion
References
Chapter 8: Innovation or Stagnation? The State of Art of Clinical Ethics Support in Switzerland
8.1 Objectives
8.2 Introduction
8.3 The Swiss Context - Europe but Not European Union
8.4 `Swiss´ Values - Responsibility, Self-Determination and Consensus
8.5 Development of Clinical Ethics Support in Switzerland - An Overview
8.5.1 Prevalence of Clinical Ethics Support Services
8.5.2 Key Topics of Clinical Ethics
8.5.3 Structural Challenges Over the Years
8.6 National Recommendations for Clinical Ethics - From `Consulting´ to `Support´
8.7 Current Challenges - Professionalization, Innovation or Stagnation
8.7.1 The Meaning of `Clinical Ethics´ Is Still Unclear
8.7.2 Concepts Are Still Unclear
References
Part II: Introduction to Part II: Emerging and Thorny Clinical Ethical Issues
Chapter 9: Ethics Consultation and Marginalized Populations
9.1 Objectives
9.2 Case 1
9.3 Case 2
9.4 Introduction
9.5 Marginalized Populations
9.6 Advocacy and Activism
9.7 Advocating for Marginalized Populations
9.8 Goals of Clinical Ethics Consultation
9.9 Feasibility and Cautions
References
Chapter 10: Vulnerable Populations, the Inverse Care Law, and the Role of Clinical Ethicists: Experiences from Switzerland
10.1 Objectives
10.2 Case: Dr. Hope and the Patient on the ``Blacklist´´
10.3 The Swiss Context: Opportunities and Vulnerabilities
10.4 The Idea of Universal Health Coverage as a Positive Right to Serve the ``Worst Off´´ and the Dynamic of the Inverse Care ...
10.5 Clinical Ethicists as Witnesses of Epistemic Injustice and the Advocacy Role
10.6 The Personal Is Political: Why Individual Approaches Are Necessary But Not Sufficient to Deal with Vulnerability in Clini...
10.7 Assessing and Addressing Vulnerability in the Clinical Setting
References
Chapter 11: Clinical Ethics Consultations Regarding Patients with Opioid Use Disorders
11.1 Objectives
11.2 Case
11.2.1 Ethical Framework: Choice and Moral Responsibility in Substance Use Disorders
11.3 Ethical Issues in the Inpatient Setting
11.4 Goals of Care: Harm Reduction or ``Clean and Sober´´?
11.5 Conclusion
References
Chapter 12: The Opioid Crisis: A European Perspective
12.1 Objectives
12.2 Case 1
12.3 Case 2
12.4 Case 3
12.5 Introduction
12.6 Opioid Overuse in Europe
12.7 Opioid Underuse
12.8 Ethical Synthesis
References
Chapter 13: Ethical Issues in Complex Discharge Cases
13.1 Objectives
13.2 Case
13.3 Introduction
13.4 Unsafe Discharge
13.5 Lack of Insurance
13.6 Patients Who Are Undocumented Immigrants
13.7 The Patient or the Patient´s Surrogate Refuses a Safe Discharge Plan
13.8 Responses to Complex Discharge Cases
13.9 Relevant Ethical Issues
References
Chapter 14: How Clinical Ethics Consultants Navigate Complex Acute Care Discharge Cases in Ontario
14.1 Objectives
14.2 Case
14.3 Application to Clinical Ethics Consultation
14.4 Conclusion
References
Chapter 15: Thorny Issues in Clinical Ethics Consultation: When Surrogates Refuse Basic Care
15.1 Objectives
15.2 Case 1
15.3 Case 2
15.4 Introduction
15.5 The Role of the Surrogate
15.6 Shared Decision Making and Refusal
15.7 Is Surrogate Refusal Also Neglect?
15.8 Response of the Clinician
15.9 Fear of Conflict
15.10 Fear of Interrupting the Surrogate´s Relationship to the Patient
15.11 Ethical Resolution of Clinical Cases
15.12 Conclusion
References
Chapter 16: Families Who Micromanage: ``Please Come Help Us with This Family - They Are Micromanaging Everything!´´
16.1 Objectives
16.2 Case 1
16.3 Case 2
16.4 Ethical Issues
16.5 Homework First
16.6 Identification of the Involved Parties
16.7 Determining the Influence of the Micromanager
16.8 Team Meeting
16.9 Reaching Team Decisions
16.10 Approaching the Micromanager
16.11 Conducting a Formal Meeting
16.12 Specific Agreements
16.13 Boundaries
16.14 ``Nuclear Options´´
16.15 What Happened in Our Vignettes?
References
Part III: Introduction to Part III: Persistent and Thorny Clinical Ethical Issues
Chapter 17: Neuroethics in the Clinic: Amplifying Patient Perspectives Through Enhanced Decision-Making Frameworks
17.1 Objectives
17.2 Case One
17.3 Case Two
17.4 Introducing Clinical Neuroethics
17.5 Case One: An Attempt to Liberate ``Locked-In Capacity´´
17.6 Case Two: Challenging Neuroessentialism
17.7 Takeaways for the Clinical Ethicist
References
Chapter 18: Brain Death/Death by Neurological Criteria in the United States: What Every Clinical Ethics Consultant Should Know
18.1 Objectives
18.2 Case
18.3 Medical History of BD/DNC
18.4 Legal History of BD/DNC
18.5 Reasons for Families to Object to BD/DNC
18.6 Consequences of Objections from Families to BD/DNC
18.7 Ways to Address Objections from Families to BD/DNC
18.8 Ways to Prevent Controversy Due to Objections from Families to BD/DNC
18.9 Objections from Healthcare Professionals to BD/DNC
18.10 The Need for Consent Prior to Determination of BD/DNC
18.11 Conclusion
References
Chapter 19: When Patients Still Hope, But Doctors See No More Therapeutic Options: Ethical Debates on Futility and Potentially...
19.1 Objectives
19.2 Case
19.3 Why Patients and Surrogates Demand Non-indicated Treatments
19.4 Why Doctors Reject Patients´ or Surrogates´ Potentially Inappropriate Treatment Requests
19.5 Medical Futility in the Discussion
19.6 A Process Model for Dealing with Requests for Potentially Inappropriate Treatment in a Clinical Context
19.7 Outlook
References
Chapter 20: Physician Aid in Dying in the United States: A Prescription for Death or Control?
20.1 Objectives
20.2 Case
20.3 Physician-Aid-In-Dying Laws: An Ongoing Ethical Debate
20.4 Legal Requirements: Qualified Patients and Reporting
20.5 Rational Suicide and the Role of the Psychiatrist
20.6 Opting In or Out: Healthcare Professional Conscience
20.7 A Timely Process?
20.8 Role of the Clinical Ethics Consultant
20.9 Conclusion
References
Chapter 21: Medical Aid in Dying in Canada: Undertaking Clinical Ethics Consultations in a Rapidly Evolving Regulatory Landsca...
21.1 Objectives
21.2 Case one - Quadriplegia, Treatment Refusal, and ``Natural´´ Death
21.3 Introduction
21.4 Applying Eligibility Criteria
21.5 Case Two - Julia Lamb and Reasonable Foreseeability
21.6 Clinical Ethics Consultants and Conscientious Disagreements
21.7 Conclusion
References
Chapter 22: Physician Assisted Suicide and Euthanasia in the European Context
22.1 Objectives
22.2 Case Study: Dealing with a Suicidal Patient´s Reported ``Wish to Die´´
22.3 Europe: A Continent with a Wide Range of Frameworks
22.4 Recent Development in Germany: Back to Tolerance?
22.5 The Very Particular Situation in Switzerland - Controversy About Guidelines
22.6 Ethics Consultation and Policies for Orientation
22.7 Outlook: Thorny Issues Persisting
References
Chapter 23: Pediatric Ethics Issues and Clinical Ethics Consultation in the United States
23.1 Objectives
23.2 Case One
23.3 Introduction
23.4 The Responsibility of Parents
23.5 Deciding for Children: Two Moral Concerns
23.5.1 Who Decides?
23.5.2 What Decisions Are Allowed?
23.6 Children Continue to Develop: Teenage Decisions Making
23.7 Conclusion
References
Chapter 24: Ethical Issues and Decision Making for Children: A European Perspective
24.1 Objectives
24.2 Case 1
24.3 Case 2
24.4 Introduction
24.5 Best Interests of the Child
24.6 Decision Making at the End of Life
24.7 Refusals of Life Saving Treatment by Minors
24.8 Conclusion
References
Chapter 25: The Adolescent Transplant Candidate: Thorny Issues in Assessment and Allocation
25.1 Objectives
25.2 Case One
25.3 Introduction
25.4 Timing of Transplant and Non-adherence as a Listing Factor
25.5 Marijuana and Other Behaviors in Transplant Candidacy Decisions
25.6 Adolescent Decision Making in Transplant Listing Decisions
25.7 Conclusions
References
Chapter 26: Classifying the Contradiction: A Practical Approach When Surrogates Appear to Contradict a Patient´s Wishes
26.1 Objectives
26.2 Case 1
26.3 Case 2
26.4 Surrogate Decision-Making
26.5 Identifying the Source of Contradiction
26.6 Clarifying the Patient´s Wishes
26.7 Establishing the Ethical Framework
26.8 Supporting Stakeholders
26.9 Conclusion
References
Chapter 27: Thorny Issues in Clinical Ethics Consultation: A Canadian Perspective on Surrogate Decision Making Concerning Pote...
27.1 Objectives
27.2 Case One
27.3 Informed Consent and Withholding and Withdrawing Life-Sustaining Treatment in Canada
27.4 Ethical Justifications for Overriding Surrogate Decision Making
27.5 Conclusion - A Morally Distressing Situation
References
Part IV: Introduction to Part IV: Organizational Issues in U.S. Ethics Consultation
Chapter 28: Moving Ethics Upstream: Shifting Clinical Ethics Consultation from Volume to Value
28.1 Objectives
28.2 Case
28.2.1 Reactive Clinical Ethics Consultation Model
28.2.2 Proactive Clinical Ethics Consultation Model
28.3 Nature of the Problem
28.4 Constructing a Proactive Ethics Integration Model
28.4.1 Systematic Approaches and Standardized Resources
28.4.2 Identifying and Addressing Clinical Ethics Issues
28.4.3 Integrating into Existing and Emerging Clinical and Organizational Processes
28.5 Conclusion
References
Chapter 29: The Tension Between ``Margin and Mission´´ as an Ethical Issue in Healthcare
29.1 Objectives
29.2 Case One
29.3 Can Clinical Ethics Help in Organizational Issues?
29.4 The Competing Identities of an Organization: Discerning an Ethical Resolution
References
Correction to: Thorny Issues in Clinical Ethics Consultation
Correction to: K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, htt...

Citation preview

Philosophy and Medicine

P&M143

Katherine Wasson Mark Kuczewski   Editors

Thorny Issues in Clinical Ethics Consultation North American and European Perspectives

Philosophy and Medicine Founding Editors H. Tristram Engelhardt, Rice University, Houston, TX, USA Stuart F. Spicker, Renodo Beach, USA

Volume 143 Series Editors Søren Holm, The University of Manchester, Manchester, UK Lisa M. Rasmussen, UNC Charlotte, Charlotte, USA Editorial Board Members George Agich, National University of Singapore, Singapore, Singapore Bob Baker, Union College, Schenectady, NY, USA Jeffrey Bishop, Saint Louis University, St. Louis, USA Ana Borovecki, University of Zagreb, Zagreb, Croatia Ruiping Fan, City University of Hong Kong, Kowloon, Hong Kong Volnei Garrafa, International Center for Bioethics and Humanities, University of Brasília, Brasília, Brazil D. Micah Hester, University of Arkansas for Medical Sciences, Little Rock, AR, USA Bjørn Hofmann, Norwegian University of Science and Technology, Gjøvik, Norway Ana Iltis, Wake Forest University, Winston-Salem, NC, USA John Lantos, Childrens’ Mercy, Kansas City, MO, USA Chris Tollefsen, University of South Carolina, Columbia, USA Dr Teck Chuan Voo, Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore

The Philosophy and Medicine series is dedicated to publishing monographs and collections of essays that contribute importantly to scholarship in bioethics and the philosophy of medicine. The series addresses the full scope of issues in bioethics and philosophy of medicine, from euthanasia to justice and solidarity in health care, and from the concept of disease to the phenomenology of illness. The Philosophy and Medicine series places the scholarship of bioethics within studies of basic problems in the epistemology, ethics, and metaphysics of medicine. The series seeks to publish the best of philosophical work from around the world and from all philosophical traditions directed to health care and the biomedical sciences. Since its appearance in 1975, the series has created an intellectual and scholarly focal point that frames the field of the philosophy of medicine and bioethics. From its inception, the series has recognized the breadth of philosophical concerns made salient by the biomedical sciences and the health care professions. With over one hundred and twenty five volumes in print, no other series offers as substantial and significant a resource for philosophical scholarship regarding issues raised by medicine and the biomedical sciences.

Katherine Wasson • Mark Kuczewski Editors

Thorny Issues in Clinical Ethics Consultation North American and European Perspectives

Editors Katherine Wasson Neiswanger Institute for Bioethics and Health Policy Maywood, IL, USA

Mark Kuczewski Neiswanger Institute for Bioethics and Health Policy Maywood, IL, USA

ISSN 0376-7418 ISSN 2215-0080 (electronic) Philosophy and Medicine ISBN 978-3-030-91915-3 ISBN 978-3-030-91916-0 (eBook) https://doi.org/10.1007/978-3-030-91916-0 © Springer Nature Switzerland AG 2022, corrected publication 2022 Chapters 2, 9: © This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply 2022 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Preface

Plans for this volume began in 2019 with the aim of addressing “thorny issues” in clinical ethics consultation. Some of these issues have been around since the early days of ethics consultation and others have emerged over time. All of them are issues that do not admit of an answer or solution that can settle the relevant cases once and for all. All of them are continually challenging for those who undertake this work, along with our healthcare colleagues, patients, and their families. In other words, these thorny issues constitute the day-to-day work of clinical ethics consultation. The purpose of this collection is to examine how such issues are framed and approached in North American (United States and Canada) and European healthcare contexts. The intended audience includes those who do this work directly, serve on ethics committees, and others who wrestle with these issues. The content of this volume is divided into four parts. The first contains the important work of capturing the history and development of clinical ethics consultation in a variety of countries. The history in each country is individual; the factors that gave rise to the recognized need for ethics consultations, structure of these services, terms used, and processes followed vary to some degree. Yet, there are commonalities, such as the need for ethics support, approaches taken, and challenges faced. The range of persons providing ethics consultation typically includes physicians, nurses, chaplains, theologians, philosophers, lawyers, and others. Interestingly, few countries have a formal certification process, notably the US and Germany, or specified training requirements for the field. Two chapters in the first part specifically address training of ethics consultants including new and emerging approaches as well as quality assessment and quality improvement. The combination of chapters and range of perspectives from different countries and continents provides a unique set of parallel narratives regarding the development of clinical ethics consultation not previously assembled in one volume. Parts II and III focus on “applying” ethics consultation to specific issues, both old and new. The authors begin the chapters with case descriptions to focus their analyses. These case studies bring the chapters to life, and we asked the authors to offer suggestions or recommendations on resolving the cases. Nevertheless, the v

vi

Preface

chapters mirror an ongoing ambiguity regarding clinical ethics consultation. Namely, some chapters seem to suggest that the role of the consultant is simply to offer an analysis of the ethical issues in the case. Others take an approach that indicates that the consultant should try to “facilitate” resolution. This ambiguity is likely to persist well into the future. The specific content of Part II deals with emerging thorny issues faced in hospitals and by ethics consultants, including caring for marginalized populations, opioid use disorder and under-prescribing of opioids, complex discharge cases, micro-managing families, and surrogates who refuse basic care on behalf of patients. How clinical ethics consultants can and should engage these issues is examined by the authors and practical approaches are offered. Part III addresses persistent and thorny ethical issues. These issues have been around since the early days of ethics consultation and remain challenging. They are sometimes considered the “bread and butter” cases of ethics consultations and include the ever-present and thorny issues around end-of-life decisions, futility and potentially inappropriate treatments, brain death, assisted dying, as well as ethical issues within pediatrics and surrogate decision making. Each topic is addressed by contributors from North America and Europe providing an account of the ongoing issue, key elements for analysis, and ways the clinical ethicist can approach such dilemmas in practice. Readers can learn from the experience of the authors and compare and contrast with their own context. Adopting a higher-level perspective, the final chapters in Part IV touch on the business of healthcare and organizational issues, such as upstream interventions to promote quality decision making and the realities of margin and mission in healthcare systems. These issues may be somewhat peculiar to the fragmented financing and delivery system of the US with the result that no counterparts by European ethicists are included here. It is difficult to discern at the present time whether these types of organizational challenges will become a continuing part of the clinical ethics consultant’s portfolio of thorny issues or become the purview of other experts in healthcare. At the time of this writing, the COVID-19 pandemic is ongoing in the US and other countries with variants emerging and case numbers spiking, continuing the pressure on healthcare professionals who have been on the frontlines for months. While some may find it strange that this book contains no explicit chapters on the pandemic, it is not clear that the response to the pandemic will have a long-lasting effect on clinical ethics consultation. Clinical ethicists have been very involved in the creation of ventilator triage policies in the US. However, the lesson from that effort is not obvious as there has been no documented case of implementation of such a policy at this writing. Of perhaps more interest is whether the pandemic may increase the use of remotely conducted consultations. Clinical ethics consultants have been restricted from entering the clinic as have the patient’s family and other visitors who are often parties to consultation. At the same time, the pandemic accelerated the use of videoconferencing technologies in healthcare, that is, telemedicine. Some ethics consultants have made increasing use of these technologies in addition to the more established telephone calls. Some believe that remote

Preface

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consultations may promote an emphasis on the provision of information rather than the facilitation of consensus among the parties. However, it is not yet clear to what extent the use of these technologies has been successful, will proliferate in the postCovid world, or represents a change in the substance of ethics consultations. The reader will note that we provided a structure for each chapter, namely stated objectives, a case, and specific attention to the role of the clinical ethics consultant, while allowing for some variation in style from each author. Each chapter indicates the continent or country from which the authors view and capture these issues. We hope this volume sheds new light on the persistent issues we face in clinical ethics as well as on these emerging issues. Different countries and systems can learn from the histories and development of clinical ethics services, training programs, framing of these thorny ethical issues and approaches to addressing them in practice, and perhaps translate lessons into their own setting. No such volume is written in a vacuum. We want to thank our contributors for their perseverance amidst the challenges they faced, along with their insights and critical reflection offered in each chapter. The volume would not have come into being without the foresight and commitment of our editors at Springer, Chris Wilby and Floor Oosting, who had the vision for a practical volume on clinical ethics consultation which reaches across countries and continents. We would also like to thank our colleagues at Trinity Health and at Loyola University Chicago Stritch School of Medicine who face these thorny issues on a daily basis and invite us to wrestle with ethical challenges alongside them. In addition, it is our privilege to work with our colleagues at the Neiswanger Institute for Bioethics and Health Policy who engage these issues with us and make coming to work each day a pleasure. Finally, we want to express our deep gratitude to our spouses, E. David Cook and Kate Nolan. They make us better human beings. Maywood, IL, USA

Katherine Wasson Mark Kuczewski

Contents

Part I

Introduction to Part I: History and Development of the Formation and Training of Clinical Ethics Consultants

1

A Brief Introduction to the History of Clinical Ethics . . . . . . . . . . . . . 3 Robert Baker

2

Clinical Ethics Consultation: Current Standards in the Field . . . . . . . 13 Anita Tarzian

3

What Does Competency Have to Do with It? Ethics Fellowship Training and the Experience of a Hospital-Based Program in Canada . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21 Dave Langlois, Juhee Makkar, and Michael J. Szego

4

Models of Training for Clinical Ethics Consultants and Approaches to Quality Assessment and Improvement . . . . . . . . . 29 Katherine Wasson

5

New Approaches for Advancing Ethics Quality: Assessment of the Ethics Consultation Record . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39 David Alfandre and Robert A. Pearlman

6

Historical Development of Clinical Ethics Consultation in Europe . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47 Ralf Jox and Stella Reiter-Theil

7

Clinical Ethics Consultation in Germany: History, Current Status and Models of Training . . . . . . . . . . . . . . . . . . . . . . . 55 Gerald Neitzke and Alfred Simon

8

Innovation or Stagnation? The State of Art of Clinical Ethics Support in Switzerland . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65 Rouven Porz, Hubert Kössler, and Urs Mosimann

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Contents

Part II

Introduction to Part II: Emerging and Thorny Clinical Ethical Issues

9

Ethics Consultation and Marginalized Populations . . . . . . . . . . . . . . . 75 Marion Danis

10

Vulnerable Populations, the Inverse Care Law, and the Role of Clinical Ethicists: Experiences from Switzerland . . . . . . . . . . 85 Tanja Krones and Settimio Monteverde

11

Clinical Ethics Consultations Regarding Patients with Opioid Use Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93 Mark G. Kuczewski

12

The Opioid Crisis: A European Perspective . . . . . . . . . . . . . . . . . . . .101 Ralf J. Jox

13

Ethical Issues in Complex Discharge Cases . . . . . . . . . . . . . . . . . . . . .109 Kayhan Parsi

14

How Clinical Ethics Consultants Navigate Complex Acute Care Discharge Cases in Ontario . . . . . . . . . . . . . . . . . . . . . . .117 Sally Bean and Julija Kelecevic

15

Thorny Issues in Clinical Ethics Consultation: When Surrogates Refuse Basic Care . . . . . . . . . . . . . . . . . . . . . . . . . .125 Sarah Vittone

16

Families Who Micromanage: “Please Come Help Us with This Family – They Are Micromanaging Everything!” . . . . . . . . . . . .135 Patricia A. Mayer

Part III

Introduction to Part III: Persistent and Thorny Clinical Ethical Issues

17

Neuroethics in the Clinic: Amplifying Patient Perspectives Through Enhanced Decision-Making Frameworks . . . . . . . . . . . . . . .147 Sharon L. Feldman, Paul J. Ford, and Lauren R. Sankary

18

Brain Death/Death by Neurological Criteria in the United States: What Every Clinical Ethics Consultant Should Know . . . . . . . . . . . . . . . . .155 Sok Lee and Ariane Lewis

19

When Patients Still Hope, But Doctors See No More Therapeutic Options: Ethical Debates on Futility and Potentially Inappropriate Treatment . . . . . . . . . . . . . . . . . . . . . .165 Christof Mandry

Contents

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20

Physician Aid in Dying in the United States: A Prescription for Death or Control? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .173 Felicia Cohn

21

Medical Aid in Dying in Canada: Undertaking Clinical Ethics Consultations in a Rapidly Evolving Regulatory Landscape . . . . . . . .181 Benjamin Zolf and Udo Schuklenk

22

Physician Assisted Suicide and Euthanasia in the European Context . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .191 Charlotte Wetterauer and Stella Reiter-Theil

23

Pediatric Ethics Issues and Clinical Ethics Consultation in the United States . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .199 D. Micah Hester

24

Ethical Issues and Decision Making for Children: A European Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .209 Helen Turnham and Dominic Wilkinson

25

The Adolescent Transplant Candidate: Thorny Issues in Assessment and Allocation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .217 Aviva Goldberg

26

Classifying the Contradiction: A Practical Approach When Surrogates Appear to Contradict a Patient’s Wishes . . . . . . . . . . . . . . . . . . . . . . .225 Hilary Mabel, Sharon L. Feldman, and Margot M. Eves

27

Thorny Issues in Clinical Ethics Consultation: A Canadian Perspective on Surrogate Decision Making Concerning Potentially Non-beneficial Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .235 Katarina Lee-Ameduri

Part IV

Introduction to Part IV: Organizational Issues in U.S. Ethics Consultation

28

Moving Ethics Upstream: Shifting Clinical Ethics Consultation from Volume to Value . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .243 Mark Repenshek

29

The Tension Between “Margin and Mission” as an Ethical Issue in Healthcare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .253 Patrick J. McCruden

Correction to: Thorny Issues in Clinical Ethics Consultation . . . . . . . . . . . C1

Acronyms

AAB ACES AEM ALC AHA ANA AMA AS ASBH BD BI BIS BWHBC CBE CBS CDC CEC CECA CECAG CHA CMS CPR DBS DNC DNAR DNR ECEN ECHR ECtHR ECS

American Association of Bioethicists Assessing Clinical Ethics Skills Tool Akademie für Ethik in der Medizin (German Association for Medical Ethics) Alternate Level of Care American Hospital Association American Nurses Association American Medical Association Assisted Suicide American Society for Bioethics and Humanities Brain Death Best Interests Best Interests Standard Boston Women’s Health Book Collective Competency-Based Education Canadian Bioethics Society Centers for Disease Control and Prevention Clinical Ethics Consultation Clinical Ethics Consultation Affairs Clinical Ethics Consultation Affairs Group Catholic Health Association Centers for Medicare & Medicaid Services Cardio-Pulmonary Resuscitation Deep Brain Stimulation Death by Neurological Criteria Do Not Attempt Resuscitation Do Not Resuscitate European Clinical Ethics Network European Convention on Human Rights European Court of Human Rights Ethics Consultation Service xiii

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EMTALA EPA ECQAT HC HEC-C HCEC HEC ICCEC ICU KIE LTCH LVAD MAiD MAT MPOA NA NaP NWRO OT OUD PAD PAS PT QA QI RTDS SAMS SBC SDM SHHV UDDA UHC WDLST WHLST

Acronyms

Emergency Medical Treatment and Labor Act Entrustable Professional Activity Ethics Consultation Quality Assessment Tool Hastings Center Healthcare Ethics Consultant-Certified Healthcare Ethics Consultation Certification Task Force Hospital Ethics Committee International Conference on Clinical Ethics Consultation Intensive Care Unit Kennedy Institute of Ethics Long-Term Care Home Left Ventricular Assist Device Medical Aid in Dying Medication-Assisted Treatment Medical Power of Attorney Narcotics Anonymous Natrium-Pentobarbital National Welfare Rights Organization Occupational Therapy Opioid Use Disorder Physician Aid-in-Dying Physician Assisted Suicide Physical Therapy Quality Assessment Quality Improvement Right-to-Die Societies Swiss Academy of Medical Sciences Society for Bioethics Consultation Surrogate Decision Maker Society for Health and Human Values Uniform Determination of Death Act Universal Health Coverage Withdrawal of Life-Sustaining Treatment Withholding of Life-Sustaining Treatment

Part I

Introduction to Part I: History and Development of the Formation and Training of Clinical Ethics Consultants

This part provides important background for any reader on the history and development of clinical ethics consultation in North America and Europe. It lays the foundation for understanding the current state of the art of clinical ethics consultation and the persistent and thorny issues addressed in this volume. The combination of the development of clinical ethics consultation as a field, various standards, training of clinical ethics consultants and quality assessment and improvement is not readily captured elsewhere in one volume. The various histories and accounts provide a much-needed background and context for the current state of clinical ethics consultation on both continents and help the reader see the similarities and differences in each setting. The authors also raise key questions for those in the field about standards, training, and evaluation along with the professionalization of ethics consultation. The chapters are grouped by continent with the North American chapters placed together and European chapters following. The chapters were selected to provide capsules of the historical development of the field and its standards. They were not intended to nor could they be comprehensive but will allow the reader to gain a clear understanding of the field in each context with references for further investigation. Robert Baker provides a history of the development of clinical ethics consultation in the United States (US) while Ralf Jox and Stella Reiter-Theil capture this history in the European context. Anita Tarzian addresses the historical development of standards in the field, milestones in its evolution in the US, and the pros and cons of adopting these standards in different healthcare institutions. The chapter by Gerald Neitzke and Alfred Simon describes a well-established clinical ethics profession in Germany with standards set by the German Association for Medical Ethics including national training programs, a curriculum and certification. In contrast, Rouven Porz, Hubert Kössler and Urs Mosimann acknowledge that clinical ethics as a practice, called Clinical Ethics Support, is established in Switzerland but has no demonstrable ethics training or continuing education requirements. They also highlight the societal values that provide the context for its development and influence its methods. The chapters by Dave Langlois, Juhee Makkar and Michael J Szego and Katherine Wasson address key challenges in the training of clinical ethics

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consultants. The former chapter offers a model of training fellows based on Competency Based Education. The latter describes alternative models for training beyond the full-time fellowship model along with approaches to quality assessment and quality improvement. Lastly, the chapter by David Alfandre and Robert Pearlman presents a method for quality assessment focused on ethics consultation written records. While the chapters each focus on a particular country, region or continent, clinical ethicists across these settings can learn from the experience of others particularly regarding different training models and quality assessment and improvement efforts.

Chapter 1

A Brief Introduction to the History of Clinical Ethics Robert Baker

Abstract This brief introductory history traces the origins of Western clinical ethics from the Hippocratic Oath to the professionalization of clinical ethics consultation (CEC) in the 1970s. Modern CEC began in the early nineteenth century when English physician Thomas Percival’s developed professional rules for CEC in the newly emergent institution of the charity hospital to defuse intra-practitioner conflict and protect patients from abuse. In 1847 the American Medical Association (AMA) Americanized Percival’s ethics as a contractarian code of ethics that reconfigured Percival’s rules for consultation and patient protection in the context of a benignly paternalistic science-based medicine. As the AMA envisioned the clinical encounter, scientifically trained doctors would decide what was best for patients; and patients, in return, would obey doctors’ orders. This set the model for American clinical ethics until the 1970s when newly enacted civil rights, Medicaid, and Medicare laws entitled African Americans, the elderly, the poor, and women to move from charity, Negro, and women’s hospitals and wards into integrated ones. In this context the clinical ethics of science-based benign medical paternalism proved unable to respond to patients’ demands, or to challenges posed by emerging morally disruptive technologies (e.g., ventilators). A bioethical model of a multidisciplinary therapeutic partnership between clinician teams and patients’ autonomy-based rights emerged in response. Although retaining traditional medical ethical ideals of beneficence and justice, bioethical CEC also stressed patient autonomy. Eventually bioethicists formed professional societies which developed codes of ethics for CEC, and the AMA and other professional societies revised their codes of ethics to accommodate bioethical ideas. Keywords Clinical ethics consultant · Ethics codes · History of clinical ethics consultation · Hippocratic oath · Patients’ rights · Professionalization

R. Baker (*) Department of Philosophy, Union College, Schenectady, NY, USA e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_1

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Objectives

1. To present an accessible but authoritative brief introductory history of the field of clinical ethics. 2. To present this history in the context of the broader history of clinical ethics dating to the Hippocratic Oath, evolving into professional medical ethics and, more recently, as bioethics. 3. To critically analyze the different efforts to move toward professionalization of clinical ethics in the United States.

1.2

The Birth of Clinical Ethics

The oldest statement of clinical ethics in the Western medical tradition was drafted for trainees in the Hippocratic school (circa fifth to fourth century BCE), who swore an oath that they would “(3.i) use regimens for the benefit of the ill in accordance with my ability and judgment, (ii) from [what is] to their harm or injustice I will keep [them] .. . . (7.i) Into as many houses as I may enter, I will go for the benefit of the ill, (ii) while being far from all voluntary and destructive injustice especially from sexual acts both upon women’s bodies and men’s, both of the free and of the slaves. (8.i) And about whatever I may see or hear in treatment, or even without treatment, in the life of human beings—things that should not ever be blurted out outside (ii) I will remain silent, holding such things to be unutterable, [sacred, not to be divulged]” (Von Staden 1996, 407). This oath assured healthcare-seekers that those trained in Hippocratic medicine would use their knowledge and treatments to benefit the sick irrespective of social status (free or slave), or gender (male or female). Moreover, they would not breach confidentiality or engage in sexual exploitation. It also forbade trainees, as neophytes, from prescribing dangerous medicines or destructive pessaries (e.g., to expel a retained placenta) and would defer to those with expertise. The Hippocratic oath fell into disuse in later periods but was resuscitated by the World Medical Association (WMA) as a response to German physicians’ complicity in the Holocaust and abuse of concentration camp inmates as unconsenting human guinea pigs. The reformulated oath required medical students or newly licensed physicians to “consecrate [their] life to the service of humanity. . . . [to treat] THE HEALTH OF MY PATIENT [as] my first consideration; . . . [and] NOT PERMIT considerations of religion, nationality, race, party politics or social standing to intervene between my duty and my patient” (WMA 1948). Today some version of a Hippocratic oath is sworn at medical schools throughout the US and Canada, and in many schools worldwide. (Dossabhoy et al. 2018; Gillon 2000; Kao and Parsi 2004; WMA 1948, 2017).

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The Professionalization of Clinical Ethics

In 1803 English physician Thomas Percival (1740–1804) reformulated clinical ethics as something new, “medical ethics,” an expression he coined to describe a code of “professional ethics” detailing the “extensive moral duties” governing “the relations in which a physician stands to his patients, to [fellow practitioners], and to the public,” (Percival 1803, viii). Percival emphasized the need for confidentiality, and held that in hospitals, as in private practice, the physician’s moral duty is to minister to the sick with “attention, steadiness, and humanity” (Percival 1803. Chap. II, Art. 1). The AMA reiterated these words when it crafted a code of professional ethics at its founding meeting in 1847 (AMA 1847, Chap. I Art. I), adding that physicians should also recognize “poverty. . .as presenting valid claims for gratuitous services,” that “such professional services should always be cheerfully and freely accorded,” that physicians should be “ever ready to obey the calls of the sick”(AMA 1847, Chap. III, Art. I); adding that, “when pestilence prevails. . .it is their duty to face the danger and to continue their labors for the alleviation of the suffering, even at jeopardy of their lives” (AMA 1847, Chap. III, Art I, Sec. III).

1.4

1970s: Patients’ Rights Affirmed, But Ignored!

Issues of social justice, a recurring theme in Western medical ethics from the Hippocratic Oath to the professional codes of Percival and the AMA, had new resonance in the 1960s when civil rights laws and the Medicare and Medicaid initiatives lowered discriminatory and financial barriers to hospital care for the elderly, poor people, and minorities. As these patients moved up from charity, Colored/Negro, and female facilities to integrated healthcare facilities they confronted vestiges of ageism, classism, racism, and sexism (Sellers 1989). Responding to these patterns of discrimination the National Welfare Rights Organization (NWRO) and the Boston Women’s Health Book Collective (BWHBC,) joined forces to lobby the American Hospital Association (AHA) “to do something about doctors who were: condescending, paternalistic, judgmental and non-informative” (Boston Women’s Health Book Collective 1973). They protested against such commonplace practices as healthcare facilities refusal to offer appointments, thereby frittering away patients’ time in overcrowded waiting rooms as if it— or they—were of little value. They also challenged the practice of misinforming, or failing to inform, patients that they were being used as experimental subjects (Jonsen 1998, 368–371). In 1972 the AHA placated the protesters by endorsing “A Patient’s Bill of Rights.” Among these rights were: patients’ rights to have appointment times in advance; to have their diagnoses, prognoses, and treatment options explained in terms they could understand; to be told whether a proposed treatment was

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experimental; to consent to, and to refuse to participate in, treatments or experiments; and the right to be informed of physicians’ potential conflicts of interest. Yet, to paraphrase Emerson, what one does, speaks louder than what one says. Since the AHA failed to initiate any mechanism for enforcing these rights, hospitals’ treatment of patients at risk for discrimination remained unchanged (American Hospital Association 1973; Baker 2019, 169–170). Academic medicine and its medical centers were singularly ill equipped to address issues of social justice at this time because an ethos of scientism permeated their culture and curriculum so thoroughly that in the 1970s not one single American medical school required its students take a course, or a course segment, on medical ethics (Jonsen 1998, 360–361). In 1969 medical school faculty critical of this ethos formed the Society for Health and Human Values (SHHV). Other clinicians disturbed by issues of social justice and by ethical questions surrounding morally disruptive medical innovations that required new concepts, e.g. “brain death”, and new practices, e.g. Do Not Resuscitate Orders, collaborated with lawyers, philosophers, and theologians to form the Hastings Center (HC) and the Kennedy Institute of Ethics, and the American Philosophical Association sponsored an institute to train philosophers to participate in a field that came to be called “bioethics” (Baker 2019, 168–170). Clinicians and patients soon began to consult with these newly minted bioethicists and bioethics institutes for advice (Baker 2002, 2018; Culver 1990; McCullough 2002; Veatch 2002). For example, the director of the HC’s Death and Dying working group, Robert Veatch, advised Joseph and Julia Quinlan, who were suing to discontinue ventilator support for their irreversibly comatose daughter, Karen. The court’s decision was a watershed moment in the history of Clinical Ethics Consultation (CEC) because, in ruling that Joseph Quinlan could have his daughter’s ventilator support discontinued, it conferred legal immunity on physicians disconnecting her ventilator—provided that a hospital ethics committee (HEC), review the case (IN RE QUINLAN 1976). Thus, for the first time, a court required physicians to consult HECs, i.e., a standing committee on ethical issues that could include non-physicians, thereby legitimating the practice of multidisciplinary CEC.

1.5

1980s: HECs and Ethics Consultation Spread

The idea of HEC’s was newly introduced to the legal literature and the Quinlan ruling inadvertently characterized a medical committee assessing the accuracy of a neurological prognosis as a “HEC” (Clinical Care Committee 1976, Teel 1975). Serendipitously, however, the Quinlan court’s misnomer inspired other hospitals to found multidisciplinary HECs and, by 1983, 4.3% of hospitals had HECs. Clinicians found HECs helpful in clarifying ethical issues (73.3%); in providing legal protection for hospitals and staff (60%); in “shap[ing] consistent policies with respect to

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life support (56.3%); [and in] provid[ing] opportunities for professionals to air disagreements (46.7%)” (Younger et al. 1983). Employers were soon calling on members of these committees, offhandedly referred to as “ethicists,” to educate students, trainees, and fellow professionals; to serve on Institutional Animal Care and Use Committees, and on Institutional Review Boards. As HECs became commonplace, a bioethicist-physician-lawyer team published a practical manual on conducting CEC (Jonsen et al. 1982). Their book, Clinical Ethics, which had the appearance and utility of a medical handbook, integrated clinical ethics consultation into standard clinical procedures by creating a format for entering clinical ethics consultation team’s recommendations into medical chart notes. Since, as a practical matter, consults by teams of CECs, or by solo consultants, could be more responsive to immediate issues than HECs, they soon became commonplace in academic medical centers and large hospitals. Yet no bioethics society had set standards for competence in CEC; or had offered guidance on ethical issues arising in its practice. Recognizing this gap, Canadian philosopher Benjamin Freedman warned that, “clinical ethics is [not] so complicated. . .that it alone among [healthcare] professions should be without a shared and public understanding of the moral dimensions of its practice” (Freedman 1989, 137–8).

1.6

1990s: A Crisis of Confidence in Clinical Ethics Consultation

Bioethics societies proliferated in the late 1980s and 1990s, most notably: Society for Bioethics Consultation (SBC est. 1986); Canadian Bioethics Society (CBS est. 1988); and the American Association of Bioethics (AAB est. 1994). Seeking to limit this proliferation, the AAB, SBC, and SHHV merged to form the American Society for Bioethics and the Humanities (ASBH est. 1996). Yet, the newly merged society still failed to promulgate standards for qualifying as clinical ethics consultants, or for competent practice, and it issued no code of ethics. Thus, it stood by helpless to respond when an academic medical center disbanded its clinical ethics consultation service because its ethicist had testified, under subpoena, that her center’s policy of incarcerating non-compliant pregnant drug addicted Medicaid patients “fail[ed] to meet the institution’s. . .standards [of] informed consent. . . . [because] the risk of. . .arrest and incarceration was not made clear to the patients” (American Association of University Professors 1999; Antommaria 2004). The ASBH’s membership responded by electing this ethicist, Mary Faith Marshall, president. In a moving presidential address, “Speaking Truth to Power,” Marshall urged development of a code of ethics. The ASBH board demurred but took a small step towards professionalization by adopting, “Core Competencies for Healthcare Ethics Consultation” (SBC-SHHV 1998).

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2000s: A Crisis of Confidence

CEC arose as an offshoot of a bioethics movement born in the liberal KennedyJohnson Great Society era (Baker 2005b). Yet as “liberal” came to be regarded as an obscenity rather than an accolade, disparaging voices condemned bioethicists and their clinical counterparts as a secular priesthood trespassing on the authority of medicine and religion (Shalit 1997; Siegler 1999; Smith 2000), who had been corrupted by money, prestige, and power (Elliot 2001a, b; Sharpe 2002). They also denounced bioethicists advising biotech and pharmaceutical companies as “sellouts” in the New York Times and US News and World Report (Boyce 2001; Stolberg 2001). In one critic’s words, “The problem with ethics consultants is that they look like watchdogs but can be used like show dogs” (Elliot 2001a). Yet, lacking professional standards, the nascent profession had no defense—except to futilely protest its integrity (Perlman 2005). Recognizing an existential crisis, bioethics societies began to respond (Baker 2009). A CBS ad hoc working group issued a statement on working conditions for Canadian ethicists (MacDonald et al. 2001); its chair drafted code of ethics for ethics consultants (MacDonald 2003)—which the CBS did not adopt. In the United States (US), the ASBH, and the American Society for Law, Medicine and Ethics jointly issued guidelines for bioethicists advising biotech and pharmaceutical companies (Brody et al. 2002). Nonetheless, the ASBH board maintained its silence on a code of ethics for clinical ethics consultants. Yet such a code could clarify for both hospital managements and clinical ethics consultants how to navigate conflicts between consultants’ duties of confidentiality and non-disclosure and their obligations to defend patients’ rights or interests. Steven Miles, a founding member of the ASBH, observed in his letter resigning from the organization, its “reluctan[ce] or [in] abil[ity] to act on behalf of the threatened . . .interests of its members” by clarifying their responsibilities to the various constituencies they serve was a profound disservice to the field (Miles 2004; Scofield 2008). The author published a draft code of ethics for bioethicists (Baker 2005a), which was discussed at the ASBH’s 2005 national meeting. Shortly thereafter President Arthur Derse urged developing ethics standards for bioethicists and clinical ethics consultants (Derse 2005). The ASBH then commissioned an Advisory Committee on Ethics Standards (ACES) which found that ASBH members supported a code of ethics 3.6 to 1 and recommended drafting a code for clinical ethics consultants (Baker et al. 2006).

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2010–2020: Clinical Ethics Consultation Professionalizes

By 2006 CEC was offered in 4 out of 5 hospitals in the US and it had become a standard service in virtually all US hospitals with over 400 beds. Yet only 4 in 10 ethics consultants had formal training in ethics consultation (Fox et al. 2007). Acknowledging the need for professionalization, in 2009 the ASBH tasked a Clinical Ethics Consultation Affairs (CECA) committee with drafting a code of ethics for clinical ethics consultants. Mindful of the ASBH board’s previous demurrals on codes of ethics, CECA developed a participatory process for formulating a code. In 2014 the ASBH adopted it (ASBH 2014; Tarzian et al. 2015.) Furthering professionalization, in 2011 the ASBH revised the Core Competencies report (SBC-SHHV 1998; ASBH 2011) and tasked a Healthcare Ethics Consultation Certification Task Force with developing a certification process to validate the competency of clinical ethics consultants. Surveying clinical ethics consultants (57.4% ASBH members, 42.6% not members), the Task Force found that 3 out of 4 believed that certification would validate their professional knowledge and professional legitimacy. Drawing on this data the ASBH constructed a certification process and in November 2018 the first exam was offered for anyone with a bachelor’s degree or higher who had at least 400 h of clinical ethics consultation experience. These 400 h of experience were characterized broadly to include not only direct involvement in clinical ethics consultation, but also such activities as developing policies relating to CEC (e.g. DNR policy), running clinical ethics teaching sessions and debriefing others involved in ethics consultation (ASBH 2017, 2020).

1.9

The Past as Prologue

Antonio, a character in The Tempest, remarks at one point that “what’s past is prologue; what’s to come is yours and mine to discharge” (Shakespeare 1610– 1611). The past may be dismissed as prologue, but it often indicates how the future is likely to unfold. As this brief history reports, CEC was an offshoot of a bioethics movement that arose about a half century ago to address ethical issues raised by morally disruptive technologies and demands for social justice that the American healthcare professions, having embraced an ethos of scientism, was unable to address. Within a few decades of its birth, however, the bioethics movement and its CEC offshoot had to confront a backlash that unfolded in a barrage of scandalmongering headlines. Eventually bioethics societies navigated this threat by developing codes of ethics, formulating criteria for accessing competency in CEC, and developing a system that certified clinical ethics consultants. In consequence, today CEC has become an established healthcare profession in the US and Canada.

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Nonetheless, the future may become as tempestuous for the field as its past has been. The next generation of clinical ethics consultants and their bioethics colleagues still need to address the festering issues of social injustice starkly revealed during a COVID-19 pandemic far more deadly for African American and Latinx communities than for White communities (Ford et al. 2020). They must also learn to function in a cyber-dominated medical space in which telemedicine evolves into the dominant mode of outpatient clinician-patient consultation, in which resurgent scientism perpetuates systemic racism in seemingly objective algorithms (Vyas et al. 2020), and in which social media disseminate populist anti-scientific misinformation more effectively than the CDC website. The issues of social injustice and morally disruptive technologies that catalyzed the birth of bioethics and modern CEC remain with us; albeit reformulated for a cyber-dominated medical space. Just as Antonio observed, the disposition of the field’s future lies with the decisions of the next generation of bioethicists and clinical ethics consultants.

References American Association of University Professors. 1999. Medical University of South Carolina Administration Backs Down. Academe Online 85 (4): 6. American Hospital Association. 1973. Statement on a Patient’s Bill of Rights Affirmed by the Board of Trustees November 17, 1972. http://ethics.iit.edu/codes/AHA%201972.pdf. Accessed 9 Feb 2020. American Medical Association. 1847. Code of Ethics of the American Medical Association. Philadelphia: American Medical Association. http://ethics.iit.edu/ecodes/sites/default/files/ Americaan%20Medical%20Association%20Code%20of%20Medical%20Ethics%20%28184 7%29.pdf. Accessed 13 Mar 2020. American Society for Bioethics and Humanities. 2011. Core Competencies for Healthcare Ethics Consultation. 2nd ed. Glenview: ASBH. American Society for Bioethics and the Humanities. 2014. Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants. Glenview: ASBH, https://asbh.org/ uploads/publications/ASBH%20Code%20of%20Ethics.pdf. Accessed 13 Feb 2020. ———. 2017. Certification for Health Care Ethics Consultants: An Update. Glenville: ASBH, https://asbh.org/uploads/Announcement.pdf. Accessed 13 Feb 2020. ———. 2020. Eligibility for Healthcare Ethics Consulting Certification, https://asbh.org/ certification/hec-c-eligibility. Accessed 17 June 2020. Antommaria, Armand. 2004. A Gower Maneuver: The American Society for Bioethics and Humanities’ Resolution of the Taking Stands Debate. The American Journal of Bioethics 4 (1): W24. Baker, Robert. 2002. From Metaethicist to Bioethicist. Cambridge Quarterly of Healthcare Ethics 11 (4): 369–379. https://doi.org/10.1017/s0963180102114101. ———. 2005a. A Draft Model Aggregated Code of Ethics for Bioethicists. American Journal of Bioethics 5 (5): 33–41. ———. 2005b. Getting Agreement: How Bioethics Got Started. The Hastings Center Report 35 (3): 50–51. ———. 2009. In Defense of Bioethics. Journal of Law, Medicine, & Ethics. 37 (1): 83–92. https:// doi.org/10.1111/j.1748-720X.2009.00353.x. ———. 2018. Philosopher’s Invasion of Clinical Ethics: Historical and Personal Reflections. American Journal of Bioethics 18 (6): 51–52. https://doi.org/10.1080/15265161.2018.1461464.

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———. 2019. The Structure of Moral Revolutions. Cambridge, MA: MIT Press. Baker, Robert, H. Robert Pearlman, and Kenneth Kipnis Taylor. 2006. Report and Recommendations of the ASBH Advisory Committee on Ethics Standards (ACES). Glenville: American Society for Bioethics and Humanities. Boston Women’s Health Book Collective. 1973. “Preface,” Our Body, Our Selves, Preface, https://wgs10016.commons.gc.cuny.edu/preface-from-the-1973-edition-of-our-bodies-our selves/. Accessed 9 Feb 2020. Boyce, Nell. 2001. And Now Ethics for Sale: Bioethicists and Big Bucks. Problem City? US News & World Report, https://ahrp.org/bioethics-and-big-bucks-us-news/. Accessed 12 Mar 2020. Brody, Baruch, Nancy Dubler, Jeffrey Blustein, Arthur Caplan, et al. 2002. Bioethics Consultation in the Private Sector. The Hastings Center Report 32 (3): 14–20. Clinical Care Committee of the Massachusetts General Hospital. 1976. Optimum Care for Hopelessly Ill Patients. A Report of the Clinical Care Committee of the Massachusetts General Hospital. New England Journal of Medicine 295 (7): 62–64. Culver, Charles. 1990. Ethics at the Bedside. Hanover/London: University Press of New England. Derse, Arthur. 2005. Ethics Standards for Bioethicists. ASBH Exchange 3 (8): 2. Dossabhoy, S., J. Feng, and M. Desai. 2018. The Use and Relevance of the Hippocratic Oath in 2015—A Survey of US Medical Schools. Journal of Anesthesia History 4 (2): 139–146. https:// doi.org/10.1016/j.janh.2017.09.005. Elliott, Carl. 2001a. Pharma Buys a Conscience. The American Prospect 12 (17): 16–20. ———. 2001b. Throwing a Bone to the Watchdog. Hastings Center Report 31 (2): 19–21. Ford, Tiffany, Sarah Reber, Richard Reeves, June 16. 2020. Race Gaps in COVID-10 Deaths Are Even Bigger than they Appear. Washington, DC: Brookings Institute, https://www.brookings. edu/blog/up-front/2020/06/16/race-gaps-in-covid-19-deaths-are-even-bigger-than-they-appear/ . Accessed 21 June 2020. Fox, Ellen, Sarah Myers, and Robert A. Pearlman. 2007. Ethics Consultation in United States Hospitals: A National Survey. American Journal of Bioethics 7 (2): 13–25. https://doi.org/10. 1080/15265160601109085. Freedman, Benjamin. 1989. Bringing codes to Newcastle. In Clinical Ethics: Theory and Practice, ed. Barry Hoffmaster, Benjamin Freedman, and Gwen Fraser, 125–130. Clifton: Humana Press. Gillon, Raanan. 2000. White Coat Ceremonies for New Medical Students. Western Journal of Medicine 173 (3): 206–207. https://doi.org/10.1136/ewjm.173.3.206. IN RE QUINLAN, 70 N.J. 10 (1976). 355 A.2d 647. In the Matter of Karen Quinlan, an Alleged Incompetent. Supreme Court of New Jersey Jonsen, Albert, 1998. The Birth of Bioethics. New York: Oxford University Press. Jonsen, Albert. 1998. The Birth of Bioethics. New York: Oxford University Press. Jonsen, Albert, Mark Siegler, and William Winslade. 1982. Clinical Ethics. New York: Macmillan. Kao, A.C., and K.P. Parsi. 2004. Content Analyses of Oaths Administered at U.S. Medical Schools in 2000. Academic Medicine 79 (9): 882–887. MacDonald, Chris. 2003. Draft Model Code of Ethics for Bioethics, https://docplayer.net/4995824Draft-model-code-of-ethics-for-bioethics-chris-macdonald-ph-d-1.html. Accessed 13 Feb 2020. MacDonald, Chris, Michael Coughlin, Christine Harrison, Abbyann Lynch, et al. 2001. Working Conditions for Bioethics in Canada. Canadian Bioethics Society Newsletter 6 (1): 3–5. McCullough, Laurence B. 2002. The Accidental Bioethicist. Cambridge Quarterly of Healthcare Ethics 11 (4): 359–368. https://doi.org/10.1017/s0963180102114095. Miles, Steven. 2004, March 31. To the Board and Officers of the American Society of Bioethics and Humanities: An Open Letter of Resignation from the Society. Perlman, David. 2005. Bioethics in Industry Settings: One Situation Where a Code for Bioethics Would Help. The American Journal of Bioethics 5 (5): 62–64. Scofield, Giles R. 2008. What Is Medical Ethics Consultation? Journal of Law, Medicine & Ethics. 36 (1): 95–118. Sellers, James, November 1989, Medical Ethics and the Civil Rights Movement: Why Informed Consent Is Too Little, Too Late, Second Opinion, 12: 46-61.

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Shakespeare, William. 1610–1611. The Tempest Act 2, Scene, 1, 245–254. Shalit, Ruth. 1997. When We Were Philosopher Kings. New Republic, 28 April. http:// catholiceducation.org/articles/medical_ethics/me0008.html. Accessed 13 Feb 2020. Sharpe, Virginia Ashby. 2002. Science, Bioethics and the Public Interest: On the Need for Transparency. Hastings Center Report 32 (3): 23–26. Siegler, Mark. 1999. Medical Ethics a Medical Matter. In The American Medical Ethics Revolution, ed. R. Baker, A. Caplan, L. Emanuel, and S. Latham, 171–179. Baltimore: Johns Hopkins University Press. Smith, Wesley J. 2000. Culture of Death: The Assault on Medical Ethics in America. San Francisco: Encounter Books. Society for Health and Human Values—Society for Bioethics Consultation Task Force on Standards for Bioethics Consultation. 1998. Core Competencies for Ethics Consultation. Glenville: American Society of Bioethics and Humanities. Stolberg, Sheryl Gay. 2001, 2 August. Bioethicists Find Themselves the Ones Being Scrutinized. New York Times, A1, A16. Tarzian, Anita J., Lucia D. Wocial, and ASBH Clinical Ethics Consultation Affairs Committee. 2015. A Code of Ethics for Healthcare Ethics Consultants: Journey to the Present & Implications for the Field. American Journal of Bioethics 15 (5): 38–51. https://doi.org/10.1080/ 15265161.2015.1021966. Teel, Karen. 1975. The Physician’s Dilemma: A Doctor’s View—What the Law Should Be. Baylor Law Review 27 (1): 6–9. Veatch, Robert M. 2002. The Birth of Bioethics: Autobiographical Reflections of a Patient Person. Cambridge Quarterly of Healthcare Ethics 11 (4): 359–368. https://doi.org/10.1017/ s0963180102114071. von Staden, H. 1996. “In a pure and holy way:” Personal and Professional Conduct in the Hippocratic Oath? Journal of the History of Medicine and Allied Sciences 51: 404–437. https://doi.org/10.1093/jhmas/51.4.404. Vyas, D.A., L.G. Eisenstein, and D.S. Jones. 2020. Hidden in Plain Sight—Reconsidering the Use of Race Correction in Clinical Algorithms. New England Journal of Medicine, https://www. nejm.org/doi/full/10.1056/NEJMms2004740. Accessed 20 June 2020. World Medical Association. 1948. Declaration of Geneva, https://www.wma.net/wp-content/ uploads/2018/07/Decl-of-Geneva-v1948-1.pdf. Accessed 12 Mar 2020. ———. 2017. Declaration of Geneva, https://www.wma.net/policies-post/wma-declaration-ofgeneva/. Accessed 12 Mar 2020. Younger, Stuart, David Jackson, Claudia Coulton, et al. 1983. A National Survey of Hospital Ethics Committees. In President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. 1983. Deciding to Forego Life-Sustaining Treatment: A Report on the Ethical, Medical and Legal Issues in Treatment Decisions. Washington, DC: US Government Printing Office (83-600503). 443–457.

Chapter 2

Clinical Ethics Consultation: Current Standards in the Field Anita Tarzian

Abstract Should those charged with overseeing a clinical ethics consultation (CEC) service identify the practice standards to which its CEC practitioners will be held accountable? In this chapter, we explore the answer to this question. Historical milestones of CEC practice are reviewed, along with the pros and cons of adopting CEC practice standards and measuring adherence to established standards. Terms are clarified, e.g., standard practices, process standards, service standards, and the question of how valuable practice standards will be in promoting CEC quality is explored. Finally, given that most hospitals in the U.S. are small, non-academic facilities that perform few ethics consultations each year, the question is raised of whether holding all hospitals accountable to the same CEC practice standards is of value, or whether other models should emerge to better accommodate concerns about CEC quality and access. Keywords Clinical ethics consultation · Standards · Ethics committees · Quality improvement · Healthcare ethics

2.1

Objectives

1. To define “standards” as applied to CEC. 2. To describe milestones in the evolution of current CEC standards. 3. To consider what CEC standards should guide an institution’s ethics consultation service.

A. Tarzian (*) University of Maryland, Baltimore, Baltimore, MD, USA e-mail: [email protected] © This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_2

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Case

Deirdre is a community hospital staff nurse with an interest in clinical ethics. Enrolled in an applied ethics Master’s program, Deirdre has recently joined the hospital’s ethics committee. The ethics committee chair, Dr. Pilar, was asked by the hospital’s medical director to chair the ethics committee ten years ago and has since been in that position. Dr. Pilar handles ethics consultation requests himself and spends the hour-long monthly ethics committee meeting doing a retrospective review of ethics consults done the prior month (often there are none) and discussing an ethics education topic. During one committee meeting, Deirdre asks what CEC standards are in place at the hospital. Dr. Pilar suggests that Deirdre oversee a standards subcommittee to propose which standards the ethics committee should adopt. How should the subcommittee proceed?

2.3

Defining Standards

Before answering the question before Deirdre and her subcommittee, it’s helpful to clarify terminology—what does CEC and its standards comprise? CEC is one of eight “areas of responsibility” Chidwick et al. (2010) identified as the purview of a “healthcare ethicist.” This chapter focuses on one of those domains: the practice of CEC, defined as “a set of services provided by an individual or a group in response to questions from patients, families, surrogates, healthcare professionals, or other involved parties who seek to resolve uncertainty or conflict regarding value-laden concerns that emerge in healthcare” [American Society for Bioethics and Humanities (ASBH) 2011a, b, p. 2]. CEC can be provided by clinical ethics consultants employed for that service, as well as those who do ethics consultation as part of another professional role. Reel (2012) pointed out that ethics standards exist for all healthcare professions— for example, in codes of ethics, policies, and position statements. So, what is it that ethics consultants do that is different from other healthcare professionals when responding to requests to address an ethical dilemma or uncertainty? And more importantly, what should ethics consultants do to actually help those requesting their services? These questions are at the root of how practice standards develop and evolve. Reel distinguishes between “practice standards” and “practice-defining documents.” The former identifies minimum threshold expectations, “the point at which a newly trained practitioner takes up the role independently. . . rather than aspirational notions of what anyone’s or everyone’s practice might become with experience” (Reel 2012, p. 209). “Practice-defining documents” refers to various texts that “shape and distinguish the nature and identity of a field of practice for both those engaging in it and for those engaging with it,” including practitioner competencies, job/role descriptions, education/training standards, and scope of practice

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statements (Reel 2012, pp. 207–208). Of relevance for identifying CEC standards is Reel’s articulation of distinctions between the following terms: • Standard practices clarify what is done when providing CEC (i.e., the role) as distinctive from how it is done; • Process standards focus on the “process expectations of what is done and how it is done, rather than the behavioral expectations” of the person doing it; • Service standards articulate the “expectations of a healthcare ethics service as a whole within an organization—distinct from the individual practitioner’s behavior” (Id.) This attention to CEC standards is fairly recent. Decades ago, when clinicians were faced with questions about what the “right” thing to do was for a particular patient based on rapidly emerging medical technology raising novel ethical concerns and dilemmas, those who stepped in to help did not have CEC-specific standards to guide them. However, those bioethics pioneers laid the groundwork for our presentday standards to emerge. That evolution is wrapped up with the emergence of hospital ethics committees (HECs).

2.4

CEC & Ethics Committees: Historical Milestones

In the 1980s, interdisciplinary ethics committees were recommended by various professional organizations as an alternative to government or court intervention in resolving patient care conflicts. A widely cited President’s Commission report (1983, p. 5) stated that healthcare institutions “should explore and evaluate . . . various administrative arrangements for review and consultation, such as ‘ethics committees,’ particularly for decisions that have life or death consequences.” In 1992, the Joint Commission on Accreditation of Healthcare Organizations required that hospitals have a mechanism to address ethical issues arising in patient care, such as a multidisciplinary ethics committee. Subsequently, the number of HECs burgeoned from just 1% in the early 1980s (Youngner et al. 1983) to over 60% at the end of that decade (Fleetwood et al. 1989). By the late 1990s, 93% of hospitals reported having an ethics committee (McGee et al. 2001). One of the functions of HECs was to provide CEC. Some raised questions about the composition of these committees, the ethics training of their members, and how they approached ethics consultation. Hoffmann (1993) noted that these committees primarily functioned informally, using the ad hoc medical consultation process familiar to physicians. This informal approach, combined with poorly defined purposes and conflicting goals of ethics committee involvement, raised questions about the quality of such committees’ input into healthcare decision making—particularly high-stakes decisions. Wolf (1991) questioned the “double identity” of ethics committees: they sometimes claim to serve patients and other times to advise professional caregivers.

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During this time, there was resistance to establishing CEC standards. In the first edition of the Core Competencies for Healthcare Ethics Consultation report (CC1) (ASBH 1998), CEC practitioners’ core knowledge and skills competencies were identified, along with whether the competency was required at the basic or advanced level. These were depicted as voluntary guidelines rather than as recommended practice standards because voluntary guidelines were thought to: 1. Reflect the “complexity and lack of data” surrounding CEC; 2. Be “sensitive to the wide diversity of institutional settings where [CEC] takes place”; 3. Encourage “gradual change” and stimulate public discussion; and 4. Allow merit to determine whether the guidelines were adopted. (ASBH 1998) Depicting the core competencies as standards was viewed in CC1 as a step toward certifying CEC practitioners’ competency, which was discouraged for a variety of reasons, including concerns about “displac[ing] providers and patients as the primary moral decision makers at the bedside and encourag[ing] an authoritarian approach” to ethics consultation (ASBH 1998). During this “pre-standards” era, various models and approaches evolved (Beauchamp and Childress 1979; Dubler and Liebman 2004; Fletcher et al. 2005; Jonsen et al. 1982). Various professional organizations, bioethics scholars, and CEC practitioners published handbooks, articles, position statements, and guidelines related to CEC—what Ackerman (1989) referred to as the “reflective social dialog” in clinical ethics. Despite skepticism toward adopting standards (Engelhardt 2011; Scofield 2012), pressure began mounting to establish and hold CEC practitioners accountable to standards. So, where should Deirdre’s subcommittee begin? Examining the currently available standards established by ASBH and the Veterans Health Administration (VHA) are good places to start. Duval et al. (2004) found that clinicians who have more training and education in ethics are more likely to request an ethics consultation. Thus, an appropriate next step may be to gauge the staff’s ethics knowledge and awareness of ethical issues. Simply raising awareness about what the ethics consultation service (ECS) offers may help build the trust and buy-in necessary to generate CEC requests. However, the ECS must then be prepared to actually meet the demand for CEC. This requires clarity on what CEC goals will be pursued, how the ECS will meet those goals, and how outcomes will be assessed. The process standards employed (e.g., which CEC approach is used, expected response time for urgent and non-urgent requests, whether one consultant responds or more than one, type of documentation required, etc.) should match the goals for each consult request. For example, during the COVID-19 pandemic, some staff requested CEC to help them process feelings of moral distress evoked by witnessing patients suffering from no-visitor policies. Addressing this type of request likely requires an approach that is different from a CEC request involving conflict between a patient’s surrogate and the healthcare team. Tailoring the approach to the requester’s needs while applying consistent standards is key to ensuring quality and demonstrating the value of the service.

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CEC Standards in the U.S.: One Size Fits All?

ASBH responded to the increasing focus on CEC accountability by revising the Core Competencies report in 2011 (CC2). The CEC evaluation section was expanded in CC2, with the rationale that “assessing how the service performs in relation to a set of standards” promotes the quality and efficiency of CEC and facilitates access to those who could benefit from it. The transition from voluntary CEC guidelines in CC1 to recommended standards in CC2 was marked by lively debate about whether the identified standards paint with an overly broad brush across ECSs. For example, consider the following ECS process standards identified in CC2: • Have a comprehensive CEC policy; • Ensure stakeholder access to CEC (i.e., anyone with standing can request CEC and an attending physician cannot deny access); • Ensure that among those providing CEC, at least 1 individual has advanced CEC knowledge & skills; • Tailor the model of CEC to the individual request (i.e., whether 1 person, a team, or a whole committee is involved); • Document case consultations in the patient’s medical record and document all CECs in the ECS’s internal records (ASBH 2011a, b). Given an annual median of only three ethics consults performed per U.S. hospital (Fox et al. 2021), one question is whether holding all healthcare institutions accountable to the same standards is appropriate. Larger hospitals and academic teaching hospitals (accounting for only 5% of U.S. hospitals) perform more CECs per year, e.g., median of 32 consults per year for hospitals with 500 or more beds and 41 consults per year for major teaching hospitals (Fox et al. 2021). Could contextual factors unique to these hospitals create more demand for CEC, e.g., higher acuity, more heterogeneous patient demographics, higher use of technologies that raise ethical questions? If so, is it cost effective to require institutions with less need for ethics services to have their own ECS and devote limited resources to meeting the same CEC standards in place at larger institutions? Yet, is it fair to permit less robust ethics consultation standards at smaller, non-academic hospitals? Ultimately, ethical concerns prompting CEC requests occur across healthcare delivery sites; not holding everyone to the same quality standards raises justice concerns. The general consensus is that CEC should be available to all who might benefit from it, and it should only be offered if basic practice standards are met. However, standards should be adaptive enough to accommodate contextual variation across institutions. If administrators at Deirdre’s hospital claim there is insufficient CEC demand to justify ECS budgetary support, they might consider supporting this work at a broader systems level. For example, some healthcare organizations have adopted a hub-and-spoke model to pool ethics resources that are then shared across healthcare delivery sites (Macrae et al. 2005). The Veterans Health Administration’s IntegratedEthics® program offers another example of this approach.

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Whether CC2 standards are appropriate across ECS’s could be addressed by gathering more data. Thus, standards for evaluating CEC services was also added to CC2, including assessing quality according to Donabedian’s components of structure, process, and outcome (ASBH 2011a, b). If Deirdre’s subcommittee decides to adopt CEC standards already developed for use in other healthcare systems, including an evaluation component will help gauge whether adaptations will be needed to meet the needs at Deirdre’s hospital.

2.6

Evaluating CEC Quality & Its Impact on Evolving Standards

The knowledge and skills competencies of individuals who comprise an ECS is a structural component of CEC quality (ASBH 2011a, b). Various methods have been developed to evaluate clinical ethics consultants’ CEC competency (Kodish et al. 2013; Dubler et al. 2009; Pearlman et al. 2016; Wasson et al. 2016). These efforts influenced ASBH’s pursuit of the healthcare ethics consultation certification (HEC-C) program, first offered in 2018 (ASBH n.d.-a). HEC-C is awarded to individuals who meet minimum requirements to take and pass an exam evaluating CEC competency. The following HEC-C exam domains reflect the relative importance placed on CEC competency standards: • Assessment (32%) (e.g., “Identify the ethical concern(s) and the central ethical question(s)”); • Analysis (28%) (e.g., “Identify a range of ethically acceptable options and their consequences”); • Process (27%) (e.g., “Facilitate effective communication among all parties”); • Evaluation and Quality Improvement (13%) (e.g., “Ensure systematic recording of ethics consultation data”) (ASBH n.d.-b). The assumption is that individuals who possess sufficient knowledge and skills competencies in these domains conduct better-quality ethics consultations. Many are calling for evidence demonstrating that the HEC-C exam is a robust measure of CEC competency, and that proficiency at this level corresponds to good CEC quality. As with other certification programs, passing an exam is only one indicator of practitioner competency, and ensuring practitioner competency is only one component of meeting these standards. One challenge is that harder-to-measure standards (e.g., possessing attributes such as compassion, patience, and humility) may be overlooked despite their integral role to providing quality ethics consultation. This issue is not unique to the CEC practitioner. More aspirational practicedefining documents traditionally supplement practice standards that are measured and evaluated via certification exams and quality improvement efforts. For example, ASBH’s Code of Professional Responsibilities for Healthcare Ethics Consultants (ASBH 2014) obligates ethics consultants to maintain CEC competency and to

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contribute to the field. One approach is to ensure that at least one individual with advanced CEC competency responds to more complex ethics consultation requests and oversees others with more basic competencies. Deirdre might appeal for a more authoritative status, such as ethics committee co-chair, to better position her to secure institutional support to grow the ECS. While establishing to which standards the hospital will hold its CEC practitioners accountable is an excellent first step in improving the hospital’s CEC quality, achieving institutional buy-in is also essential.

References Ackerman, Terrence. 1989. Moral Problems, Moral Inquiry, and Consultation in Clinical Ethics. In Clinical Ethics: Theory and Practice, ed. Barry Hoffmaster, Benjamin Freedman, and Gwen Fraser, 141–160. Clifton: Humana Press. ASBH. 1998. Core Competencies for Health Care Ethics Consultation Report. Glenview: American Society for Bioethics & Humanities. ———. 2011a. Core Competencies for Health Care Ethics Consultation Report. 2nd ed. Glenview: American Society for Bioethics & Humanities. ———. 2011b. Code of Professional Responsibilities for Health Care Ethics Consultants. Glenview: American Society for Bioethics & Humanities. Available at: https://asbh.org/uploads/ publications/ASBH%20Code%20of%20Ethics.pdf. Accessed 15 Aug 2020. ———. n.d.-a. Healthcare Ethics Consultant Certified Program. https://asbh.org/certification/ hcec-certification. Accessed 15 Aug 2020. ———. n.d.-b. Healthcare Ethics Certification Examination Content Outline and Item Development, available at: https://asbh.org/certification/content-outline. Accessed 15 Aug 2020. ———. 2014. Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants. Chicago, IL: ASBH. Available at: https://asbh.org/uploads/publications/ASBH%20Code%20of %20Ethics.pdf (last accessed February 16, 2022). Beauchamp, Thomas L., and James F. Childress. 1979. Principles of Biomedical Ethics. New York: Oxford University Press. Chidwick, Paula, Jennifer Bell, Eoin Connolly, Michael D. Coughling, Andrea Frolic, Laurie Hardingham, and Randi Z. Shaul. 2010. Exploring a Model Role Description for Ethicists. HEC Forum 22: 31–40. Dubler, Nancy N., and C.B. Liebman. 2004. Bioethics Mediation: A Guide to Shaping Shared Solutions. New York: United Hospital Fund. Dubler, Nancy N., Mayris P. Webber, Deborah M. Swiderski, and The Faculty and the National Working Group for the Clinical Ethics Credentialing Project. 2009. Charting the Future: Credentialing, Privileging, Quality, and Evaluation in Clinical Ethics Consultation. Hastings Center Report 39: 23–33. DuVal, Gordon, Brian Clarridge, Gary Gensler, and Marion Danis. 2004. A National Survey of U.S. Internists’ Experiences with Ethical Dilemmas and Ethics Consultation. Journal of General Internal Medicine 19: 251–258. Engelhardt, H. Tristam. 2011. Core Competencies for Health Care Ethics Consultants: In Search of Professional Status in a Post-modern World. HEC Forum 23 (3): 129–145. Fletcher, John C., Paul A. Lombardo, and Edward M. Spencer. 2005. Fletcher’s Introduction to Clinical Ethics. 3rd ed. Hagerstown: University Publishing Group. Fleetwood, Janet, Robert Arnold, and Richard Baron. 1989. Giving answers or raising questions?: The problematic role of institutional ethics committees. Journal of Medical Ethics 15(3): 137–42.

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Fox, Ellen, Marion Danis, Anita Tarzian, and Christopher Duke. 2021. Ethics Consultation in U.S. Hospitals: A National Follow-Up Study. The American Journal of Bioethics. Hoffmann, Diane E. 1993. Evaluating Ethics Committees: A View from the Outside. The Milbank Quarterly 71: 677–701. Jonsen, Albert, William Winslade, and Mark Siegler. 1982. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. New York: MacMillan. Kodish, Eric, Joseph J. Fins, Clarence Braddock, Felicia Cohn, Nancy N. Dubler, Marion Danis, et al. 2013. Quality Attestation for Clinical Ethics Consultants: A Two-Step Model from the American Society for Bioethics and Humanities. Hastings Center Report 43: 26–36. MacRae, Susan, Paula Chidwick, S. Berry, B. Secker, P. Hébert, R. Zlotnik Shaul, K. Faith, and P.A. Singer. 2005. Clinical Bioethics Integration, Sustainability, and Accountability: The Hub and Spokes Strategy. Journal of Medical Ethics 31: 256–261. McGee, Glenn, Joshua Spanogle, Arthur Caplan, and David Asch. 2001. A National Study of Ethics Committees. American Journal of Bioethics 1: 60–64. Pearlman, Robert, Mary Beth Foglia, Ellen Fox, Jennifer H. Cohen, Barbara L. Chanko, and Kenneth A. Berkowitz. 2016. Ethics Consultation Quality Assessment Tool: A Novel Method for Assessing the Quality of Ethics Case Consultations Based on Written Records. American Journal of Bioethics 16: 3–14. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. 1983. Deciding to Forego Life-Sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions. Washington, DC: U.S. Government Printing Office. Available at: https://repository.library.georgetown.edu/bitstream/handle/10822/ 559344/deciding_to_forego_tx.pdf?sequence¼1. Accessed 15 Aug 2020. Reel, Kevin. 2012. The Benefits of Practice Standards and Other Practice-Defining Texts: And Why Healthcare Ethicists Ought to Explore Them. HEC Forum 24: 203–217. Scofield, Giles R. 2012. Ethics Been Very Good to Us. Journal of Clinical Ethics 23: 165–168. Wasson, Katherine, Kayhan Parsi, Michael McCarthy, Viva Jo Siddall, and Mark Kuczewski. 2016. Developing An Evaluation Tool for Assessing Clinical Ethics Consultation Skills in Simulation Based Education: The ACES Project. HEC Forum 28: 103–113. Wolf, Susan M. 1991. Ethics Committees and Due Process: Nesting Rights in a Community of Caring. Maryland Law Review 50: 798–858. Youngner, S.J., D.L. Jackson, C. Coulton, B.W. Juknialis, and E.M. Smith. 1983. A National Survey of Hospital Ethics Committees. Critical Care Medicine 11 (11): 902–905.

Chapter 3

What Does Competency Have to Do with It? Ethics Fellowship Training and the Experience of a Hospital-Based Program in Canada Dave Langlois, Juhee Makkar, and Michael J. Szego

Abstract In North America, clinical ethics practice remains unregulated. Although fellowship programs administered by hospitals and ethics programs are focused on the training of new ethicists, there are few extra-institutional standards that guide fellowship curricula or pedagogy. This paper explores a distinction between two different ways of approaching training and assessment in clinical ethics: (i) the traditional “apprenticeship” approach and (ii) a “competency-based” alternative. The main characteristics of the apprenticeship model are presented, followed by a brief overview of the history of Competency-Based Education (CBE) in other healthcare disciplines. The paper analyzes the appropriateness of the CBE model for clinical ethics education. Using the experiences and observations of staff at the Centre for Clinical Ethics (in Toronto, Ontario, Canada), this paper then considers how a CBE framework could be incorporated into a clinical ethics fellowship program. Finally, a few concrete examples of CBE-based program building are provided to illustrate some of the successes and challenges of such a model. The original version of this chapter was revised: The name of one of the affiliate schools was inadvertently added as an author name (Dalla Lana) which has been corrected now. The Correction to this chapter is available at https://doi.org/10.1007/978-3-030-91916-0_30

D. Langlois Centre for Clinical Ethics, Unity Health Toronto, Toronto, ON, Canada Dalla Lana School of Public Health and Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada e-mail: [email protected] J. Makkar Centre for Clinical Ethics, Unity Health Toronto, Toronto, ON, Canada e-mail: [email protected] M. J. Szego (*) Centre for Clinical Ethics, Unity Health Toronto, Toronto, ON, Canada Dalla Lana School of Public Health and Departments of Family and Community Medicine and Molecular Genetics, University of Toronto, Toronto, ON, Canada e-mail: [email protected] © Springer Nature Switzerland AG 2022, corrected publication 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_3

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Keywords Ethics training · Fellowships · Education · Professionalization · Competency-based education

3.1

Objectives

1. To explain the difference between (i) time-based or exposure-based medical education and (ii) competency-based education (CBE) 2. To analyze whether CBE—which has not historically been used in training clinical ethics consultants—is an appropriate educational model for bioethics 3. To describe and reflect on how a CBE competency and assessment framework can be built for and applied to a clinical ethics training program.

3.2

Case One

Quinn is in her eighth month of a full-time fellowship program in clinical ethics. After many months of observing and then participating in clinical consultations, she is finally beginning to lead her own consults under the supervision of the local staff ethicist, Deborah. Today, Quinn is meeting with Mark, the son of a patient. Ms. V is an 80-year-old woman who is unconscious, minimally responsive, mechanically ventilated and tube fed in the intensive care unit. She suffered a catastrophic anoxic brain injury 10 weeks ago. The ethics service was asked to consult on Ms. V’s case because the team is concerned that Mark is insisting that “everything” be done for his mother. He believes that she will “get better soon.” Deborah accompanies and observes Quinn as she approaches Ms. V’s son in the ICU quiet room. Quinn skillfully introduces herself, explains her role, and is invited by Mark to discuss his mother’s care. In the ensuing discussion, Quinn does a lot right: she explores Mark’s understanding of Ms. V’s medical condition and prognosis, she elicits information about Ms. V’s prior wishes, values and beliefs, and she provides helpful information about legal and ethical principles concerning surrogate decision-making. However, Deborah observes a number of things that she finds concerning. First, Quinn provides some incorrect clinical information about CardioPulmonary Resuscitation (CPR). Second, Quinn tells Mark that she thinks it would be best for Ms. V to have a No-CPR code status, although neither Quinn nor Deborah had discussed this recommendation with the clinical team prior to the encounter. Finally, Quinn offers to order a palliative care consult, which Quinn does not have the authority to do. At the end of the encounter, Deborah considers what feedback she should give to Quinn.

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Introduction: A Look at Training in Clinical Ethics

A responsible fellowship supervisor must provide meaningful feedback to a trainee like Quinn. However, Quinn’s experience as a fellow may vary dramatically depending on where she is being trained. In Canada, and throughout much of the world, the discipline of clinical ethics remains largely unregulated. Fellowship programs are ad hoc inventions of hospitals and ethics programs that have a special interest in training new ethicists, and there are no imposed extra-institutional standards on fellowship curricula or pedagogy. As a result, different practitioners and programs may disagree about what Quinn did well and poorly, about how best to communicate that assessment to Quinn, and about how this assessment should feature in Quinn’s overall training. This paper aims to explore a distinction between two different ways of approaching training and assessment in clinical ethics: (i) the traditional “apprenticeship” approach and (ii) a “competency-based” alternative. The next section (3.4), briefly characterizes the traditional apprenticeship approach, drawing on our own experiences and our observations of the field at large. The paper then (in 3.5) provides a brief overview of the history of CBE in other healthcare disciplines before turning (in 3.6) to look at how a CBE model could be incorporated into a clinical ethics fellowship program. The paper concludes (in 3.7) by giving a few concrete examples of our own recent experiences in CBE-based program building.

3.4

The Apprenticeship Model

There is a paucity of literature that describes the state of fellowship programs’ structure and content in clinical ethics. Thus, the argument here is based on a number of imperfect considerations: the small number of publications that explicitly address program structure and ethics pedagogy (Chidwick et al. 2004; Cline et al. 2012); our years of experience running a fellowship program at the Centre for Clinical Ethics (our “Centre”), independently and collaboratively; informal conversations with a number of programs across North America; and what can be gleaned from programs’ public-facing self-descriptions. The majority of clinical ethics fellowship programs can be characterized as using an “apprenticeship” model, in which the shadowing of experts is the primary mode of learning. Typically, a trainee observes, participates in, and then ultimately performs the work of a clinical ethicist; however, the standards legitimating progression between stages may be invisible or amorphous. Assessment is often informal and unstructured and may take the form of infrequent summative appraisals. Apprenticeships tend to use rough quantitative measures to characterize a trainee’s progression toward readiness for practice, including the amount of time spent in training and the number of consultations observed or performed.

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Our Centre runs Canada’s longest-standing postgraduate fellowship program in clinical ethics, which has historically used an apprenticeship model. Recently, we began implementing a new model due to a number of growing concerns, including a lack of pedagogical clarity and the absence of clear standards of success and failure. Our shift in focus was further motivated by our desire to maintain quality and rigor in training and ensuring equity in assessment between trainees.

3.5

The History of Competency-Based Education in Medicine

CBE is an approach to learning that has been adopted by a variety of professions worldwide, perhaps most notably in the field of medicine (Holmboe et al. 2017). CBE has been defined as “an outcomes-based approach to the design, implementation, assessment, and evaluation of medical education programs, using an organizing framework of competencies” (Frank et al. 2010). Focus is placed on acquiring sufficient ability and proficiency in a given skillset rather than simply fulfilling time-based training requirements. One of the most prominent CBE frameworks currently used worldwide is the CanMEDS Competency Framework of the Royal College of Physicians and Surgeons of Canada (CanMEDS). CanMEDS identifies the competencies expected of physicians and groups them according to seven defined roles: Communicator, Collaborator, Leader, Health Advocate, Scholar, Professional and Medical Expert. CanMEDS is now used in at least 58 jurisdictions globally and has been adapted for use in other professions (Cooney et al. 2017; Paradis et al. 2018). In contrast to traditional medical training focused on knowledge acquisition, scientific study and then apprenticeship (Carraccio et al. 2016), CBE is guided primarily by the outcomes trainees are expected to achieve. Instead of focusing on summative assessments measuring knowledge at various stages, CBE requires that trainees demonstrate the ongoing application of that knowledge (Carraccio et al. 2016). In CanMEDS, the physician’s competencies are not only defined by scientific knowledge, but include other elements such as effective communication, professionalism, and advocacy (Carraccio et al. 2016). Other central themes of CBE include learner-centeredness and a de-emphasis on time-based training (Frank et al. 2010; Cooney et al. 2017; Carraccio et al. 2016). Perhaps most importantly, CBE is not a fixed theory or set of rules that must be applied without variation. The end point remains the desired outcomes or competencies that the professional must possess; the methods used to achieve this may be different depending on the setting and local need. There are tools that can assist in implementing CBE in a professional curriculum. For example, “Entrustable Professional Activities” (EPAs) are essential tasks associated with a particular discipline; ultimately, a trainee is expected to perform such tasks without supervision (Cooney et al. 2017; Englander et al. 2017). EPAs and

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competencies are closely aligned, as a trainee may be required to demonstrate a set of competencies before achieving an EPA. In addition to EPAs, "milestones" can be used to mark the level of an individual’s ability at a certain juncture in training (Cooney et al. 2017; Englander et al. 2017). In the last ten years, CBE has grown to become a powerful force of change in medical education and beyond. There is great potential in taking the lessons learned in CBE for medicine and applying them to clinical ethics.

3.6

CBE in Clinical Ethics

A CBE approach in clinical ethics would be characterized by at least four basic criteria: (i) specific practice-level competencies a trainee must demonstrate by the end of her training; (ii) a curriculum to teach and instill those competencies; (iii) the use of event-driven, outcomes-oriented assessment to document performance with respect to the competencies; and (iv) a pathway which allows fellows, through ongoing assessment, to demonstrate their readiness for independent practice. The American Society for Bioethics and Humanities (ASBH) defined and described the core competencies required to perform clinical ethics consultations (ASBH 2011). The ASBH competencies included the core skills, core knowledge and attributes required to perform clinical ethics consultations. Core skills were divided into three domains: ethical assessment and analysis; process skills; and interpersonal skills. Finally, the ASBH identified the virtues an ethics consultant must exhibit, such as patience, integrity and leadership. Given all the work done by the ASBH, one could reasonably ask the question: why use CBE when the ASBH core competencies already exist? CBE offers several key advantages for training fellows. First, the ASBH core competencies were not designed to be used as an educational or assessment framework. CBE promotes event-driven assessments, so the learner is provided feedback on strengths and weaknesses with respect to the competencies. The ASBH competencies are written at a higher level of generality than competencies in CBE frameworks and they are less suitable for event-based, real-time assessment. Second, there is an emphasis in the ASBH core competencies on knowledge. While knowledge is important, CBE is designed to examine a learner’s ability to apply their knowledge. For example, a learner may have a good knowledge of relevant consent legislation and ethics guidelines, but have trouble applying it during a live consultation. Third, CBE is flexible and can allow for the incorporation of already developed competency-oriented tools, such as the Accessing Clinical Ethics Skills tool, which is designed to evaluate clinical consultation skills during consult simulations (Wasson et al. 2016). Finally, a CBE framework can be used to teach and assess the full scope of practice for a full-time clinical ethicist beyond clinical ethics consultation (e.g., ethics education, policy review and design, research ethics reviews, and scholarly activities).

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Returning to Quinn’s case, the difference CBE can make for the fellow’s experience is apparent. If Quinn were engaged in CBE training, her successes and failures would be identified using an underlying competency framework which would establish expectations and set consistent standards for curriculum and assessment. Quinn demonstrated strength in certain competencies (e.g., eliciting information about patient wishes, values, and beliefs) while showcasing deficiencies in others (e.g., providing guidance only within one’s scope of practice). Her performance could be assessed using a structured tool that sets out the competencies a fellow should demonstrate during clinical consultations. Quinn’s readiness for independent practice could eventually be established by her consistent demonstration of competency. A skeptical reader, or a defender of the traditional apprenticeship model, may wonder whether the CBE approach adds anything substantive to Quinn’s training. A competent ethicist and conscientious supervisor should be able to give Quinn the same feedback without the formality of a competency framework and standardized assessment tools. The skeptic may also assert that there are potential risks of aligning so closely to the highly regimented medical model, including missing out on some of the intangible aspects of skillful practice in clinical ethics. These are important objections that cannot be fully adjudicated here. However, it bears mentioning that similar reservations were no doubt voiced at the advent of CBE in medicine (Holmboe et al. 2017). There were excellent medical programs and physicians before CBE-informed training. Nevertheless, CBE has been an important part of the development of the field: it promotes clarity in standards and expectations, as well as fairness and consistency in assessment. It also helps programs consistently evaluate their approach to and effectiveness in education and training. In short, CBE has helped produce better physicians. Ceteris paribus, the same should be true in clinical ethics. Deborah could in principle do an excellent job of assessing Quinn without the structure provided by CBE. But the principles of CBE are likely to make Deborah a better and more reliable educator. To conclude, we will reflect briefly on our own recent experiences in transitioning to CBE within our clinical ethics fellowship program.

3.7

Specifics, Concerns, and Next Steps

When surveying the CBE frameworks used in other healthcare professions, we were drawn to the CanMEDS physician competency framework. With CanMEDS as a guide, we remodeled our fellowship program to reflect that clinical ethics is, like medicine, a role-based discipline. In recognizing the differences between the work of a physician and the work of an ethicist, we adapted each of the seven CanMEDS roles to reflect the ethicist’s scope of practice and core competencies. While the jobs of a clinical ethicist and physician are different, we contend that each of these roles, if suitably adapted, is one that a clinical ethicist ought to skillfully inhabit.

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Table 3.1 An example of some key and enabling competencies within one role Role Key competency Enabling competency 1 Enabling competency 2

Collaborator Work effectively with their colleagues across other healthcare professions. Negotiate overlapping and shared responsibilities with other healthcare professionals, including other ethicists and ethics trainees. Explain the role of the ethicist and the scope and purpose of ethics consultation and maintain appropriate professional positioning.

The current iteration of our framework consists of seven (7) roles, each with its own definition. Within each role, we have a series of high-level “Key Competencies” that each contain a number of more fine-grained “Enabling Competencies.” Overall, across all the roles, there are a total of 29 Key Competencies and 107 Enabling Competencies (see Table 3.1 for an example). Although we have not transplanted the ASBH Core Competencies verbatim into our framework, we have ensured that analogues of the ASBH Core Competencies are embedded in our framework. Our intention has been to create a framework that characterizes the required everyday competencies of a clinical ethicist. We have built a corresponding curriculum and event-driven, competency-based assessment tools by adapting existing CanMEDS resources. For example, our clinical consultation assessment tool has scored categories corresponding to those competencies most salient to the activity of bedside consultation. Our fellows complete weekly “event cards” documenting their daily activities and noting the professional roles and competencies that were addressed along the way. Those event cards are assessed by our staff ethicists. We are still a long way away from engaging in formal program evaluation. However, our early experiences have been uniformly positive. Under the apprenticeship model, we found that small observations easily slipped away, and many “teaching moments” were lost to the busyness of the day. We now find ourselves articulating our observations more clearly to our fellows. This structure has led to richer and more transparent conversations about our fellows’ performance and our own. Anecdotally, we have found our fellows gaining confidence earlier in their training, and we have found ourselves growing correspondingly confident in their abilities. We do not know whether this is because our fellows are in fact becoming more competent earlier or, alternatively, because the ongoing demonstration and documentation of their growing competence provides concrete evidence of their preparedness at an earlier stage (or both). Either way, the result has been that our fellows are becoming increasingly independent earlier in their training. Focusing on demonstrating competency has made us acutely aware of the challenge we are setting for ourselves. For example, in committing to establishing competence in interprofessional collaboration, we are forced to design curriculum and build assessments toward this end. Similarly, committing to establishing competence in leadership has alerted us to the challenge of incorporating leadership training into a fellowship program. These revelations are both inspirational and sobering, and they reinforce our judgment that the traditional apprenticeship approach is lacking.

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In building our framework, we are making substantive claims about the abilities a clinical ethicist ought to demonstrate, and we acknowledge that there is room for reasonable disagreement. We welcome opportunities to revise our framework as we engage in internal program evaluation and collaborate with other ethicists. One could agree with the importance of transitioning our discipline’s training to CBE while rejecting the details of our specific CBE framework. We believe that CBE, and discussion about the appropriate content of a CBE framework, will promote and support the ongoing professionalization of clinical ethics.

References American Society for Bioethics and Humanities. 2011. Core Competencies for Healthcare Ethics Consultation. 2nd ed. Chicago: American Society for Bioethics and Humanities. Carraccio, C., R. Englander, E. Van Melle, O. Ten Cate, J. Lockyer, M.K. Chan, and ICBME Collaborators. 2016. Advancing Competency-Based Medical Education: A Charter for Clinician-Educators. Academic Medicine 91 (5): 645–649. https://doi.org/10.1097/ACM. 0000000000001048. Chidwick, P., K. Faith, D. Godkin, and L. Hardingham. 2004. Clinical Education of Ethicists: The Role of a Clinical Ethics Fellowship. BMC Medical Ethics 5: E6. https://doi.org/10.1186/14726939-5-6. Cline, C., A. Heesters, B. Secker, and A. Frolic. 2012. Education for Ethics Practice: Tailoring Curricula to Local Needs and Objectives. HEC Forum 24 (3): 227–243. https://doi.org/10.1007/ s10730-012-9187-8. Cooney, R., T.M. Chan, M. Gottlieb, M. Abraham, S. Alden, J. Mongelluzzo, et al. 2017. Academic Primer Series: Key Papers About Competency-Based Medical Education. The Western Journal of Emergency Medicine 18 (4): 713–720. https://doi.org/10.5811/westjem.2017.3.33409. Englander, R., J.R. Frank, C. Carraccio, J. Sherbino, S. Ross, L. Snell, and Icbme Collaborators. 2017. Toward a Shared Language for Competency-Based Medical Education. Medical Teacher 39 (6): 582–587. https://doi.org/10.1080/0142159X.2017.1315066. Frank, J.R., L.S. Snell, O.T. Cate, E.S. Holmboe, C. Carraccio, S.R. Swing, and K.A. Harris. 2010. Competency-Based Medical Education: Theory to Practice. Medical Teacher 32 (8): 638–645. https://doi.org/10.3109/0142159X.2010.501190. Holmboe, E.S., J. Sherbino, R. Englander, L. Snell, J.R. Frank, and I.C.B.M.E. Collaborators. 2017. A Call to Action: The Controversy of and Rationale for Competency-Based Medical Education. Medical Teacher 39 (6): 574–581. https://doi.org/10.1080/0142159X.2017.131506. Paradis, E., R. Zhao, J. Kellar, and A. Thompson. 2018. How Are Competency Frameworks Perceived and Taught?: An Exploratory Study in the Context of Pharmacy Education. Perspectives on Medical Education 7 (3): 200–206. https://doi.org/10.1007/s40037-018-0432-y. Wasson, K., K. Parsi, M. McCarthy, V.J. Siddal, and M. Kuczewski. 2016. Developing an Evaluation Tool for Assessing Clinical Ethics Consultation Skills in Simulation Based Education: The ACES Project. HEC Forum 28: 103–113. https://doi.org/10.1007/s10730-015-9276-6.

Chapter 4

Models of Training for Clinical Ethics Consultants and Approaches to Quality Assessment and Improvement Katherine Wasson

Abstract Clinical ethics consultation (CEC) is a multidisciplinary specialty within bioethics. The variety of pathways into CEC highlights the need for clear guidelines for training ethics consultants, standards, and approaches to Quality Assessment (QA). Traditional pathways for training have included shadowing another ethics consultant, short courses, or additional degrees in bioethics. Because of its proximity to medicine, the gold standard for training clinical ethics consultants has become the fellowship model. Yet, many clinical ethicists are full-time physicians, nurses, chaplains or other clinicians and leaving those roles for 1–2 years for a fellowship is unrealistic and not possible. Alternative models for training including online and flexible certificates or degree programs, intensive immersion courses, and short internships are needed to provide opportunities to the range of practitioners doing this work. The American Society for Bioethics and Humanities (ASBH) provides Core Competencies for Healthcare Ethics Consultants and any training must draw on them. Setting standards for training inevitably leads to the need for QA and Quality Improvement (QI) for individual clinical ethicists and ethics consultation services more broadly. This chapter examines these needs in the field and offers practical suggestions for training, competency evaluation, QA and QI. Keywords Clinical ethics · Ethics consultation · Quality assessment · Quality improvement · Training

4.1

Objectives

1. To identify the need for training of clinical ethics consultants in the United States (US) and its historical development. 2. To analyze different models of training clinical ethics consultants.

K. Wasson (*) Neiswanger Institute for Bioethics & Health Policy, Loyola University Chicago Stritch School of Medicine, Maywood, IL, USA e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_4

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3. To examine how this training relates to QA and QI for the field of clinical ethics consultation.

4.2

Introduction

With the widespread deployment of medical technologies such as mechanical ventilators, kidney dialysis machines (“artificial kidneys”), and artificial nutrition and hydration (“feeding tubes”) in the 1960s and 70s, the biological functioning of patients in debilitated states could be maintained far beyond what had previously been possible. Controversial cases involving the use and allocation of these technologies became topics of widespread public debate. News coverage of controversial cases became common, court cases involving these technologies set precedents, multidisciplinary government panels were commissioned to study the ethical issues, and physicians and healthcare institutions sought ways to resolve bedside conflicts involving ethical issues as they arose (Jonsen 1998; Rothman 1991). Physicians and other healthcare professionals looked to people outside of medicine to help them think through the moral dilemmas they faced. These physicians and others turned to philosophers and theologians in the hope that their unique education and training in ethical analysis and moral decision making might help if brought to bare on these new medical dilemmas. Initially, this emerging field was called “medical ethics” due to the prevalence of physicians engaging in and with these questions. Decades later the field has expanded to be known as “biomedical ethics” or “bioethics.” A specialty within bioethics is CEC, which focuses on ethical dilemmas that arise in the practice of healthcare. A clinical ethicist works with healthcare professionals, hospitals and other care facilities, patients and families to analyze ethical dilemmas, guide moral decision making, and help facilitate resolution when value-laden conflict arises (ASBH 2011). By its nature and history CEC is a multi-disciplinary field and, therefore, those who enter it come from a range of disciplines. (Fox et al. 2007, 2021; McGee et al. 2010; ASBH 2011) The variety of pathways into CEC highlights the need for clear guidelines for training ethics consultants and approaches to QA.

4.3

Classic Pathways into Clinical Ethics Consultation

Traditionally, one of the most common ways to obtain training in CEC has been shadowing another clinical ethics consultant. First and second-generation ethics consultants often found these people in a somewhat ad hoc manner and began to watch what they did and how they approached their work, i.e. an apprenticeship model. Others gained experience through a patchwork of experience on the job, workshops, or short intensive courses. Another mechanism was to join an ethics committee in a hospital to learn from the review of ethics consultation cases addressed by the committee or individual ethics consultants. Clinicians practicing

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in a hospital setting generally had an easier time gaining access to this type of training and experience, but there is a paucity of information about this stage. Given the strength and dominance of the medical training model in healthcare, a “classic” pathway emerged for gaining experience as a clinical ethics consultant. An individual obtains a terminal degree in a primary discipline, e.g. medicine, nursing, philosophy, theology, law, and then seeks a fellowship in clinical ethics whether through full-time or part-time models. Early fellowship programs included the University of Chicago, which offers a blend of seminars in bioethics and clinical ethics as well as practical experience in the field. Over time, full-time fellowship programs developed in the US and offer 1–2 years of training in ethics consultation specifically. Yet, even with some expansion in recent years, the number of fellowship opportunities remain limited. While the fellowship model has become the “gold standard,” it is not without challenges and gaps (Guerin et al. 2020). It is generally geared toward younger people not long out of their academic training and those who are mobile. Clinicians embedded in their own primary discipline, e.g. medicine or nursing, or people seeking a career change may find full-time fellowships impractical or elusive.

4.4

The Need for Systematic Training of Clinical Ethics Consultants

Because of the multi-disciplinary pathways into and the patchwork of experience and training in ethics consultation, clear guidance was needed from an authoritative body about what is necessary to be a competent clinical ethics consultant. After ongoing debate about whether the field of CEC ought to be professionalized and become a distinct profession, the ASBH issued the first edition of “Core Competencies for Healthcare Ethics Consultation” in 1998 and a second edition in 2011 (ASBH 1998, 2011; Tarzian and the ASBH Core Competencies Update Task Force 2013). The Core Competencies define the necessary knowledge and skills required for individual competence in CEC as well as guidance for an ethics consultation service as a whole. Interestingly, the Catholic Healthcare Association (CHA) sets out its own guidelines in “Striving for Excellence” and its content significantly overlaps with the ASBH Core Competencies (Catholic Health Association of the United States and Ascension Health 2014). However, the CHA document focuses additional attention on the Ethical and Religious Directives for Catholic Healthcare Services (United States Conference of Catholic Bishops 2018). Whether an ethics consultant is going through a formal academic degree program, clinical ethics fellowship, or gaining on-the-job experience, attention to the knowledge and skills outlined in the ASBH Core Competencies is necessary. As the field of CEC developed, the debates about professionalization continued and have recently focused on certification for clinical ethics consultants (Tarzian this volume). In 2015–16, ASBH piloted a QA process where 23 candidates submitted a

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portfolio of their ethics consultation work (Fins et al. 2016). Each portfolio included a philosophy of ethics consultation, curriculum vitae, and six longer and six shorter case write-ups. Portfolios were evaluated by experts in the field and found to be above or below the competency bar set by the Task Force, based on ASBH guidelines (Fins et al. 2016). By 2018, ASBH had changed direction and decided to offer a written examination to be a Healthcare Ethics Consultant-Certified (HEC-C) (Bruce et al. 2019; Horner et al. 2020). The examination covers multiple domains of knowledge and process skills but is neither designed nor able to assess the interpersonal skills which are vital to clinical ethics consultation. There are multiple ways a clinical ethics consultant might gain the knowledge needed to be certified, e.g. an academic degree program, clinical ethics intensives, online courses, webinars and conferences. Such degree programs may also offer clinical practica and some offer ethics consultation simulation training, though these are fewer given they are resource intensive and require particular facilities and technological capabilities. These needs and domains raise the question of how well-rounded, competent clinical ethics consultants ought to be trained.

4.5

The Ideal Training Models for Clinical Ethics Consultants

First, any training program must have clear objectives about what it aims to achieve, namely competence in clinical ethics consultation first with an eye to advanced skills and excellence later. The program should draw significantly on any national guidelines, e.g. ASBH Core Competences, and any other relevant guidelines or requirements in each country. These provide the framework and shape the goals of training. If no formal guidance exists, then efforts should be made within the profession to find areas of agreement in the field and define minimal competence even if they are not nationally sanctioned. Second, once minimal standards are identified, then appropriate methods should be chosen for education and training. Knowledge in bioethics, core principles, approaches to decision making, and key theories and concepts are central elements. Knowledge of argumentation and ethical analysis are vital. Process skills, such as facilitation, mediation, and conflict resolution, are also necessary for a competent ethics consultant (ASBH 2011; Bruce et al. 2017; Clinical Ethics Consultation Affairs Committee 2015). These can be taught through case studies, role play, and critical reflection on practical experience either verbally or through reflective writing exercises (Wald et al. 2015). Given the multi-disciplinary nature of the field, training toward competence in professional standards and certification in ethics consultation should allow multiple pathways to achieve that end. Some individuals will be able to take advantage of formal degree and fellowship programs while others may need to pursue training or

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certification while working full time. Opportunities which provide consistent and high-level training should exist for the range of individuals who are in the field and those who wish to enter the field. Typically, finding mechanisms to obtain a degree or certificate in CEC is now reasonably straightforward. In the US, multiple universities have degree programs in bioethics. Certificates in CEC existed before the ASBH HEC-C process and academic programs are adapting their offerings to meet the increased demand caused by certification. The more challenging area is how to train the wide range of individuals who wish to become clinical ethicists or are already functioning in this capacity without formal training or academic qualifications, such as a physician or nurse who has gained experience in ethics over years through clinical practice and serving on the ethics committee or even doing ethics consultation. As noted, fellowships may be the gold standard but may not be practical or possible for many professionals working fulltime in clinical areas. Alternative models include short, intensive courses and immersion experiences open to eligible healthcare professionals wishing to gain relevant knowledge and the interpersonal skills for ethics consultation. These models can deliver a great deal of knowledge and skill-building in a short time. However, if the healthcare professional does not have a venue or opportunity to apply those newly acquired skills, they may remain uneven or underdeveloped. Perhaps more ethics services should examine the possibility of short internships or longer part-time attachments where trainee ethics consultants have a structured program led by experienced professionals. This approach enables the trainees to participate in a part-time capacity, for example one day per week, and gain the necessary skills over time as well as benefiting from the experience of practicing ethics consultants. The host institution can benefit from the trainee’s time and developing expertise too. If someone is enrolled in a formal degree program, e.g. a Master’s in Bioethics, clinical practica are often required or can be arranged in a parttime capacity. Part of the challenge in developing such opportunities is that ethics consultation services may be staffed by volunteers, i.e. rotating clinicians who may not be paid to do this work on top of their normal clinical duties, and may not have the capacity to train and mentor learners. Such services may not have the institutional support to expand in this way because they are already pressed for time and resources. As a field, we should be working together to brainstorm alternative approaches, strategies for aligning the content, and providing high quality experiences and content in more concise packages for certain practitioners. Helping the multiple types of clinicians already doing some ethics consultation gain a suitable level of experience and competence should be a goal alongside others who are able to gain the necessary experience through academic degrees and fellowship programs. Smaller, community hospitals may never have the volume of ethics consultations or resources to hire a full-time ethicist, but want and need access to a competent professional. Offering multiple levels of training can meet this need and the HEC-C provides a beginning standard for achieving this aim.

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Specific Models of Training and Assessment

Models of training and assessment which focus on or include the interpersonal skills required to be a competent clinical ethics consultant include the Veterans Administration Ethics Proficiency Tool and other resources such as the CASES model (National Center for Ethics in Healthcare website 2022). This tool is extensive, as it is intended to be used as an annual review of a working ethics consultant and can be adapted as needed. The Assessing Clinical Ethics Skills (ACES) tool developed at Loyola University Chicago (Wasson et al. 2016, 2019), is specifically designed to assess the interpersonal skills of clinical ethicists. The ACES tool draws on the ASBH Core Competencies and the VA tool. It provides a framework of 12 domains and 31 specific skills for which the trainee’s performance is rated as “Done”, “Not Done” or “Done Incorrectly”. When used in live ethics consultation simulations trained raters provide feedback to trainees on their specific skills. In addition, the ACES website includes cases where learners can view the clinical ethicists in the video and rate their performance using the evaluation framework (Assessing Clinical Ethics Skills website 2022). These cases are also linked to skill builder exercises in a published casebook and learners can begin with either and have skills reinforced by using the other media (Kuczewski et al. 2018). The aim is to help the learner identify whether and where the clinical ethicist is competent or not. The hope is that the trainee can then begin to apply these skills in his/her own practice. Other approaches to developing the practical skills of clinical ethics consultants include feedback in real time after an ethics consultation and case study discussion or oral examination of a trainee. One of the most beneficial types of feedback is to video-record live role play or formal ethics consultation simulations and allow the trainee to view him/herself. The author and colleagues use this approach in multiple graduate program courses where simulation is incorporated with trained standardized patients, actors and faculty playing roles in each case. The students receive feedback using the ACES tool immediately after the simulation and then have time to review their video recording of the consult, write a critical evaluation, and receive feedback again on that written work. This approach provides optimal methods for mirroring real life scenarios while in a supportive learning environment. Having a clear framework for evaluation, appropriately trained raters, and faculty trained to provide balanced feedback is key.

4.7

Relation to Quality Assessment and Quality Improvement

Once core competencies have been established, then assessment of individuals and ethics consultation services can be examined for quality. QA is a vital process for any ethics consultation service as it allows identification of strengths, weaknesses

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and areas for QI (Repenshek 2018; Pearlman et al. 2016; Wasson 2020). In ethics consultation, quality may be a more ambiguous term than identifying minimal standards or competence. The quality of an individual clinical ethics consultant’s practice can be evaluated through annual reviews, review of written ethics chart notes, direct observation of ethics consultation practices, case simulation, and oral analysis of cases (Wasson 2020). Evaluating an ethics consultation service for QA and QI happens on multiple levels. First, the domains of the service, which usually include consultation, policy work and education should be examined. The type of consults offered and performed should be captured and evaluated, e.g. formal versus informal, telephone or in-person, family meetings or consultation with health professionals only. Who requests the consultation, e.g. attendings, residents, nurses, chaplains, as well as the different clinical units on which they happen should also be captured. Using a consistent form for data collection is important and the field of clinical ethics has faced challenges regarding how to count and record ethics consults as there is variety from system to system. Being able to report the work of the ethics consultation service to leadership is vital to educate and reinforce the contributions to the health system. A key responsibility of the ethics consultation service as a whole, which is usually linked to the work of the ethics committee, is ethics education in the hospital. Educational venues can include departmental grand rounds, brown bag case discussions in specific units, residency education conferences and new employee orientation. Internal education of the ethics committee should be ongoing as these members are ethics champions in the hospital as a whole. Being flexible to respond to the immediate needs of clinicians, patients and families as they arise as well as providing structured foundational education regarding perennial topics is helpful. Ways to evaluate these sessions include basic feedback forms and pre-post tests. Many clinicians need continuing education credits each year and, with planning, the ethics service can provide appropriate sessions to meet this need. Policy work is ongoing and the ethics committee and service should be involved in drafting and revising policies which touch on relatively common sources of ethics consultation requests, i.e. DNR or withholding and withdrawing life sustaining treatment. Having relevant stakeholders participate in drafting and provide feedback on new policies is crucial and will help improve the final policy and “buy in” from key stakeholders as well as guide the education and implementation (Flamm 2012; Wasson 2020). Any training program ought to have evaluation and assessment built into it. If it is within an academic degree program, student evaluations and regular course review add layers of feedback. Fellowship programs should have mechanisms where trainees and mentors provide feedback during the process and when completed. Once trainees are placed in jobs as clinical ethicists, they are better able to evaluate how the fellowship prepared them for that role (Guerin et al. 2020). In conclusion, the multi-disciplinary nature of the field of CEC reinforces the need to have clear standards, competencies and approaches to training those in the field and wanting to enter the field. Any program should draw on available standards

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for competence first and clearly set out the objectives for the participants. In the US, the fellowship model has gained prominence and alternative models are needed to expand access to structured, high-quality training for those unable to secure a fellowship. Assessing and evaluating trainees and practicing ethics consultants is necessary as is QA and QI for the well-being and development of ethics consultation service as a whole.

References American Society for Bioethics and Humanities. 1998. Core Competencies for Health Care Ethics Consultants. Glenview: ASBH. ———. 2011. Core Competencies for Health Care Ethics Consultants. 2nd ed. Glenview: ASBH. Bruce, C.R., G. Hardart, L. Wocial, S.G. Finder, B.J. Huberman, J. Jankowski, A.L. Katz, H.I. Lipman, D.M. Shaner, S. Sprague, and K. Wasson. 2017. Addressing Patient-Centered Ethical Issues in Health Care: A case-based study guide. Chicago: American Society for Bioethics and Humanities. Bruce, C.R., C. Feudtner, D. Davis, M.B. Benner, and Felicia Cohn for the Healthcare Ethics Consultant Certification Commission. 2019. Developing, Administering, and Scoring the Healthcare Ethics Consultant Certification Examination. Hastings Center Report 49 (5): 15–22. Catholic Health Association of the United States and Ascension Health. 2014. Striving for Excellence in Ethics: A Resource for the Catholic Health Ministry. Washington, DC: CHA. Clinical Ethics Consultation Affairs Committee. 2015. Improving Competencies in Clinical Ethics Consultation: An Education Guide. 2nd ed. Chicago: American Society of Bioethics and Humanities. Fins, J.J., E. Kodish, F. Cohn, M. Danis, A.R. Derse, N. N. Dubler, B. Goulden, M. Kuczewski, M.B. Mercer, R.A. Pearlman, M.L. Smith, A. Tarzian, and S.J. Youngner. 2016. A Pilot Evaluation of Portfolios for Quality Attestation of Clinical Ethics Consultants. The American Journal of Bioethics 16 (3): 15–24. Flamm, A.L. 2012. Developing Effective Ethics Policy. In Guidance for Healthcare Ethics Committees, ed. D. Micah Hester and Toby Schonfeld, 130–138. Cambridge: Cambridge University Press. Fox, E., S. Meyers, and R.A. Pearlman. 2007. Ethics Consultations in United States Hospitals: A National Survey. American Journal of Bioethics 7 (2): 13–35. Fox, E., M. Danis, A.J. Tarzian, and C.C. Duke. 2021. Ethics Consultation in U.S. Hospitals: A National Follow-Up Study. The American Journal of Bioethics. https://doi.org/10.1080/152651 61.2021.1893547. Guerin, R.M., D.S. Diekema, S. Hizlan, and K.L. Weise. 2020. Do Clinical Ethics Fellowships Prepare Trainees for their First Jobs? A National Survey of Former Clinical Ethics Fellows. The Journal of Clinical Ethics 31 (4): 372–380. Horner, J., A. Childress, S. Fantus, and J. Malek. 2020. What the HEC-C? An Analysis of the Healthcare Ethics Consultant-Certified Program: One year in. American Journal of Bioethics 20 (3): 9–18. Jonsen, A.R. 1998. The Birth of Bioethics. New York: Oxford University Press. Kuczewski, M.G., R.L. Pinkus, and K. Wasson. 2018. An Ethics Casebook for Hospitals: Practical Approaches to Everyday Ethics Consultations. 2nd ed. Washington, DC: Georgetown University Press. McGee, G., J.P. Spanogle, A.L. Caplan, and D.A. Asch. 2010. A National Study of Ethics Committees. American Journal of Bioethics 1 (4): 60–64.

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National Center for Ethics in Health Care, US Department of Veterans Affairs. 2022. IntegratedEthics™ Resources. Available at: https://www.ethics.va.gov/integratedethics.asp. Accessed 21 Feb 2022. Pearlman, R.A., M.B. Foglia, E. Fox, J.H. Cohen, B.L. Chanko, and K.A. Berkowitz. 2016. Ethics Consultation Quality Assessment Tool: A Novel Method for Assessing the Quality of Ethics Case Consultations Based on Written Records. American Journal of Bioethics 16 (3): 3–14. Repenshek, M. 2018. Examining Quality and Value in Ethics Consultation Services. The National Catholic Bioethics Quarterly 18 (1): 59–68. Rothman, D. 1991. Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making. New York: Basic Books. Tarzian, A. this volume. Clinical Ethics Consultation: Current Standards in the Field in Thorny Issues in Clinical Ethics Consultation. In Thorny Issues in Clinical Ethics Consultation: North American and European Perspectives, ed. K. Wasson and M. Kuczewski. New York: Springer. Tarzian and the ASBH Core Competencies Update Task Force. 2013. Health Care Ethics Consultation: An Update on Core Competencies and Emerging Standards from the American Society for Bioethics and Humanities’ Core Competencies Update Task Force. American Journal of Bioethics 13 (2): 3–13. The Assessing Clinical Ethics Skills (ACES) tool can be previewed here: https://hsd.luc.edu/ bioethics/ethicsconsultskills/. United States Conference of Catholic Bishops. 2018. Ethical and Religious Directives for Catholic Health Care Services. 6th ed. Washington, DC: United States Conference of Catholic Bishops. Wald, H., D. Anthony, T.M. Hutchison, S. Liben, M. Smilovitch, and A.A. Donato. 2015. Professional Identity Formation for Humanistic, Resilient Physicians: Pedagogic Strategies for Bridging Theory to Practice. Academic Medicine 90: 753–760. Wasson, Katherine. 2020. Quality Standards for Ethics Consultation. In Catholic Health Care Ethics: A Manual for Practitioners, ed. B. Gremmels and M. Kenney, 3rd ed. Philadelphia: The National Catholic Bioethics Center. Wasson, K., K. Parsi, M. McCarthy, V.J. Siddall, and M. Kuczewski. 2016. Developing An Evaluation Tool for Assessing Clinical Ethics Consultation Skills in Simulation Based Education: The ACES Project. HEC Forum 28: 103–113. Wasson, K., William H. Adams, Kenneth Berkowitz, Marion Danis, Arthur R. Derse, Mark G. Kuczewski, Michael McCarthy, Kayhan Parsi, and Anita Tarzian. 2019. What is the Minimal Competency for a Clinical Ethics Consult Simulation? Setting a Standard for Use of the Assessing Clinical Ethics Skills (ACES) Tool. The American Journal of Bioethics Empirical Research 10 (3): 164–172.

Chapter 5

New Approaches for Advancing Ethics Quality: Assessment of the Ethics Consultation Record David Alfandre and Robert A. Pearlman

Abstract A principal role for clinical ethics consultation is to foster healthcare quality by avoiding practices that are not ethically justifiable, reducing the risk of harm to patients, and promoting patient and staff trust in healthcare institutions. Accountability in the provision of ethics consultation ensures that these objectives are met. Approaches to accountability in the quality of healthcare/clinical ethics consultation include evaluation of the ethics consultation services’ structures, processes, and outcomes, as well as the competency of the ethics consultants. One approach to accountability is to evaluate the quality of the written consultation record. The Ethics Consultation Quality Assessment Tool (ECQAT) reflects this approach and is used in the VA healthcare system. The ECQAT provides rubrics for evaluating four key elements of an ethics consultation: ethics question, consultationspecific information, ethical analysis, and recommendations/conclusions. The ECQAT also provides opportunities for narrative comments on strengths and opportunities for improvements for each key element. The ECQAT utilizes a holistic assessment of the overall consultation quality which is justified by the interdependence of the key elements. The holistic quality rating scale has four points: poor (1), less than adequate (2), adequate (3), and strong (4). Despite the limitations of focusing on the written record, such as deviations between observation and documentation and non-attention to interpersonal communication skills, the ECQAT has value in education and training of ethics consultants, use as a quality improvement tool, and ease of use across healthcare systems. Keywords Quality improvement · Ethics consultation · Health record note · Competency · Rubric

D. Alfandre (*) · R. A. Pearlman VA National Center for Ethics in Health Care, US Department of Veterans Affairs, NYU School of Medicine, New York, NY, USA e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_5

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Objectives

1. Identify four important justifications for rating the quality of ethics consultation. 2. Characterize safeguards to ensure applicability across healthcare systems. 3. Identify four approaches to using the ECQAT to promote quality improvement with ethics case consultations.

5.2

Case One

At a recent faculty meeting, the Chair of the hospital’s Ethics Consultation Service (ECS) is conversing with the Chief of Surgery. The surgeon provides positive feedback regarding a recent complicated case and asks how the consultation service assesses its overall quality. The Chair indicates that they gather satisfaction surveys from consultation requesters as well as monitor system level data to assess various factors critical for success. This includes which services, staff, and patients are accessing the ethics consultation service, how well the service adheres to process steps in its systematic approach to ethics consultation, and the satisfaction level of consult requesters regarding the service’s expertise, timeliness, and helpfulness. The surgeon hesitates then asks, “But how do you know an individual consultation is high quality? For my surgeons, the hospital reviews their intraoperative and postoperative complications. How will the hospital know if an ethics consultation is done well?” The role of ethics consultation in healthcare settings has grown dramatically in the last two decades (Singer et al. 2001). Ethics consultants directly providing ethics input on patient care has helped to establish the field of clinical ethics and facilitate a role in providing high quality healthcare. However, as hospitals increasingly relied on the ECS to perform a central role in care, there were more calls for accountability to ensure that these consultation services were high quality. An early report in U.S. hospitals that identified significant variability in consultant experience, expertise, and consultation practices helped to advance the debate (Fox et al. 2007). At the same time across healthcare, greater accountability for high quality, high-value care led the field of clinical ethics consultation (CEC) to more critically examine its role. Low-quality ethics consultation services may lead to patient harm, loss of patient trust, staff doubts about the institutional commitment to patient-centered care, and ethics recommendations that are not ethically justifiable (Kon 2016; Nilson et al. 2008; Nilson and Fins 2006). This situation may also expose other important stakeholders, like healthcare professionals and healthcare institutions to liability, reputational risk, and defensive positions. This confluence of factors may be associated with a greater acceptance of institutional efforts and research identifying measures of ethics quality in healthcare in order to evaluate, promote, and improve ethics quality. The American Society of Bioethics and Humanities (ASBH) has consistently advanced this effort through its promotion of resources to assess and promote ethics

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quality. “Improving Competencies in Healthcare Ethics Consultation,” the later expanded Competencies report (Tarzian et al. 2013), and the ASBH Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants (Tarzian et al. 2015) specified competencies of ethics consultant knowledge, skills, and attributes of professionalism to advance the effort for better quality. More recently, there have been further attempts to assess, promote and safeguard ethics quality by evaluating the individual consultant. These include ASBH’s competency assessment program (Kodish et al. 2013) (referred to as “quality attestation”), its Healthcare Ethics Consultant-Certified (HEC-C) program (Bruce et al. 2019) and exam designed to assess knowledge competencies, as well as the Assessing Clinical Ethics Skills (ACES) tool which assesses the interpersonal skills and behaviors of the ethics consultant (Wasson 2016). Additional efforts to improve ethics consultation quality have looked at its structure, process and outcomes by evaluating consultation output, participant satisfaction and process steps within the consultation. The Department of Veterans Affairs, using its nationally standardized consultation repository called ECWeb, allows users to generate reports of structure and process steps within ethics consultation (Fox et al. 2010). This approach includes critical quality steps, e.g. if the consultant made direct contact with the patient, if recommendations were made, which services and types of staff requested consultation, and the level of urgency. Numerous authors have published other process-based approaches (Batten 2013; Flicker et al. 2014; Orr and Shelton 2009) that help consultation services assess quality based on similar processes. Assessing satisfaction has been an additional approach to evaluating quality with numerous reports of measuring stakeholder satisfaction regarding the ECS’s expertise, timeliness, and helpfulness (Bliss et al. 2016; Orr 1996). Finally, some authors have reported on comprehensive “dashboards” that gather and report ethics quality data on structure, process, and outcome elements at a facility (Repenshek 2012). These multiple efforts of assessing ethics consultation quality are likely to be complementary and a single best approach may not yet be available or sufficient. What began to emerge from this systematic push for better quality in ethics consultation was a patchwork of various tools and processes, none of which was comprehensive. This gap was not so much a limitation of the work of the scholars and others endeavoring to improve ethics quality, as a potentially inherent limitation of solving challenging quality problems across the spectrum of healthcare. Whether it be quality in surgical, medical, or psychiatric care, no one tool or assessment process is likely to be comprehensive. Combining multiple assessments together is more likely to provide a global or holistic assessment that accurately represents the care or service. For example, if a laparoscopic cholecystectomy surgery was technically flawless and avoided any operative complications, but the patient was significantly dissatisfied with the outcome because it was inconsistent with his expectations, then it suggests a quality problem that should be addressed. Conversely, an ethics consultation might lead to high participant satisfaction suggesting strong outcome quality, but if the consultation was based on flawed ethics knowledge or recommended ethically unjustifiable conclusions, then the ethics quality is limited.

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In an attempt to address a gap in ethics consultation quality, in 2015 the Department of Veterans Affairs sought to develop a tool to evaluate ethics consultation quality by assessing ethics consultation written records. This approach was used productively by previous investigators (Dubler et al. 2009) using checklists as a standardizing tool and was appealing for a number of reasons. First, using written records to assess quality was an established authoritative approach widely accepted and used throughout healthcare and, thus, was more likely to resonate with and be considered legitimate by other healthcare professionals. Second, this approach was already sanctioned by ASBH in its “quality attestation” process as part of assessing individual ethics consultant competency (Fins et al. 2016). Finally, for purposes of practicality, the written record was an accessible document that allowed for easy retrieval, use, and review. With using records as background, and using a multidisciplinary team of VA and non-VA experts in ethics consultation, the Ethics Consultation Quality Assessment Tool (ECQAT) was developed (Pearlman et al. 2016). Although developed primarily for use within the VA, consideration was given to its applicability to many different types of healthcare organizations. Different healthcare settings have variable charting practices; consequently, assessments of written records applied to all case-related ethics notes (e.g., health record, consultation service or committee note). We highlight a summary of this process below. The ECQAT was based on a process for rating the “key elements” of an ethics case consultation. Key elements were the central information relevant to the consultation and were intended to represent standards for ethics consultation regardless of the systematic approach used by an institution. These elements were iteratively established and defined by the expert development group and their total number was minimized to simplify the rating process and serve as a practical universal rating system. After extensive deliberation, the final tool included 4 key elements: the ethics question, consultation-specific information, ethical analysis, and conclusions and/or recommendations. This deliberative process to establish these elements was seen as particularly foundational because at the outset of the group’s deliberations, raters had widely divergent conceptions of the primary factors that influence and determine ethics consultation quality. In this way, agreeing on what constituted the central factors that determine ethics quality in written consultation records was crucial to the tool’s development. Each key element has 2–3 sub-elements that provided further specification. The ethics question in the written record was rated on whether it focused the consultation response by clarifying the ethical concern (i.e. uncertainty or conflict over values) that gave rise to the consultation request, identified whose values were uncertain or in conflict, and identified the decision or action in question. The consultationspecific information was rated on whether it informed the ethical analysis by conveying the most important information to answer the ethics question and inform the analysis by reflecting appropriate sources and processes to obtain this information. The ethics analysis was rated on whether it provided justification for the conclusions and/or recommendations by articulating valid and compelling arguments and counterarguments based on the consultation specific information and by

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analyzing the ethics concern with focus and depth. Finally, the conclusions and/or recommendations were rated on whether they were practical, responsive to the ethics question, and promoted ethical practices by identifying and explaining the range of ethically justifiable options. Individual consultation records are rated on a 4-point scale by how well they represent the holistic totality of the four key elements. Ratings of 1 (i.e., poor) or 2 (i.e., less than adequate) are considered less than acceptable and scores of 3 (i.e., adequate) or 4 (i.e., strong) represent acceptable quality. Examples of ratings at each level of quality are available online (“Ethics Consultation Quality Assessment Project” 2016). This division between scores of 1 and 2 with scores of 3 and 4 was recognized by tool developers and in user testing as particularly useful because of a “threshold” effect in rating. Consensus on a specific numeric rating was more difficult to achieve than agreeing or whether the consultation was rated as “acceptable” or “less than acceptable.” This division was colloquially referred to as being “above the bar or not,” and facilitated negotiation and agreement among raters about acceptable ethics consultation quality. Although the tool requires assessing each key element, it uses a holistic assessment method, which is intended to reflect the interdependence of the various key elements. This approach is drawn from the evaluation process for the Scholastic Aptitude Test (SAT) essay section and legal briefs including administrative decisions in the U.S. Department of Agriculture (Klurfeld and Placek 2011). In contrast, an ethics consultation record could be rated on its individual key and sub- elements, each element weighted, and an analytic method applied using a mathematical formula to determine a global score. However, the tool developers recognized the interdependence of these elements and agreed that combining the individual assessments of each key element as part of a holistic assessment allowed for a more coherent evaluation in determining overall quality of the written record (i.e., “the whole is greater than the sum of its parts”) and was believed to be easier or more efficient than other traditional analytic methods. There are a number of limitations associated with the use of the ECQAT that are important to consider when implementing this quality improvement tool. First, the ECQAT uses record documentation rather than actual observation of ethics consultant skills or how the consultant was perceived by central stakeholders. Although this limitation exists in other areas of healthcare where quality is measured, authors have elaborated on its relevance to quality for ethics consultation (Agich 2016; Molewijk et al. 2016). Second, consult record documentation and the key elements may not reflect the range of consultant skills that might be important to the process or outcome of the consultation. For example, as numerous scholars have identified (Bruce et al. 2019; Wasson 2016), there will not necessarily be documentation of the inter-professional and interpersonal skills used by a consultant, some of which might be central to participant satisfaction or in achieving stakeholder consensus about resolving the ethics concern. The ECQAT has numerous potential roles as a quality improvement tool in ethics consultation. Individual facilities can use the tool within their own institution to assess the quality of the service they provide. As part of a quality assurance process

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that can be reported to facility leadership and promote accountability, independent raters can review prior ethics consultations using the ECQAT. Ethics consultation service members could be trained to use the ECQAT by working with established ECQAT raters who have already demonstrated their proficiency in the use of the tool. Once acceptable interrater reliability has been established between the two parties, that ethics consultant could serve as an ECQAT rater on their service. The ECQAT can also be used in training sessions by applying it to deidentified prior or hypothetical cases. Using the key elements as a model, trainees can be guided to identify where the consultation record adequately documents the key elements, where are the opportunities for improvement, and how consultation practices can change to address these gaps. These sessions can be performed with graduate students in ethics, early professional development of ethics consultants, and even as part of ongoing quality improvement and peer review for an ECS. In this way, identifying positive features as well as gaps in skill and competency level through the ECQAT can promote more specific and targeted training. As a related measure of ethics quality, results of ECQAT assessments can be cross-evaluated with other measures of ethics quality including participation satisfaction, consultation process measures, and other standardized measures that assess success factors like how well the service is integrated and accessible to staff. Finally, the tool could be used for formal quality attestation or as part of a certification process for ethics consultants as part of the HEC-C. All of these uses require a cadre of trained raters who will be able to rate ethics consultation records with acceptable reliability. Raters need to be proficient in the use of the tool such that they can achieve adequate calibration with some reference standard. An early study indicated that training of experienced ethics consultants by qualified raters can help ethics consultants adequately apply the ECQAT and achieve an acceptable level of calibration in matching expert-established quality scores for “acceptable” (i.e., level 3 or 4) consultations (Pearlman et al. 2018). Further studies are needed to help establish wider validity and reliability across a diverse range of trainees.

5.3

Conclusion

In summary, divergent interests are promoting quality in ethics consultation. All methods have limitations, but reliance on the written record and an established rubric developed by ethics experts from varied health systems provides an approach that can be used with confidence across healthcare settings. The ECQAT serves this purpose and has numerous applications including education and training, peer review, and quality assurance at the ethics consultation service level.

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References Agich, G.J. 2016. Truth in Advertising: Reasonable Versus Unreasonable Claims About Improving Ethics Consultation. American Journal of Bioethics 16: 25–26. https://doi.org/10.1080/ 15265161.2015.1134717. Batten, J. 2013. Assessing Clinical Ethics Consultation: Processes and Outcomes. Medicine and Law 32: 141–152. Bliss, S.E., J. Oppenlander, J.M. Dahlke, G.J. Meyer, E.M. Williford, and R.C. Macauley. 2016. Measuring Quality in Ethics Consultation. The Journal of Clinical Ethics 27: 163–175. Bruce, C.R., C. Feudtner, D. Davis, and M.B. Benner. 2019. Developing, Administering, and Scoring the Healthcare Ethics Consultant Certification Examination. Hastings Center Report 49: 15–22. https://doi.org/10.1002/hast.1050. Dubler, N.N., et al. 2009. Charting the Future: Credentialing, Privileging, Quality, and Evaluation in Clinical Ethics Consultation. Hastings Center Report 39: 23–33. https://doi.org/10.1353/hcr. 0.0208. Ethics Consultation Quality Assessment Project. 2016. Retrieved January 14, 2020, from 2016 website: https://www.ethics.va.gov/activities/ecq.asp. Fins, J.J., E. Kodish, F. Cohn, M. Danis, A.R. Derse, N.N. Dubler, et al. 2016. A Pilot Evaluation of Portfolios for Quality Attestation of Clinical Ethics Consultants. American Journal of Bioethics 16: 15–24. https://doi.org/10.1080/15265161.2015.1134705. Flicker, L.S., S.L. Rose, M.M. Eves, A.L. Flamm, R. Sanghani, and M.L. Smith. 2014. Developing and Testing a Checklist to Enhance Quality in Clinical Ethics Consultation. Journal of Clinical Ethics 25: 281–290. Fox, E., S. Myers, and R.A. Pearlman. 2007. Ethics Consultation in United States Hospitals: A National Survey. American Journal of Bioethics 7: 13–25. https://doi.org/10.1080/ 15265160601109085. Fox, E., M.M. Bottrell, K.A. Berkowitz, B.L. Chanko, M.B. Foglia, and R.A. Pearlman. 2010. Integratedethics: An Innovative Program to Improve Ethics Quality in Health Care. Innovation Journal 15: 1–36. Klurfeld, R., and S. Placek. 2011. Rhetorical Judgments: Using Holistic Assessment to Improve the Quality of Administrative Decisions. Journal of the National Association of Administrative Law Judiciary 31 (2): 526–554. Kodish, E., J.J. Fins, C. Braddock, F. Cohn, N.N. Dubler, M. Danis, et al. 2013. Quality Attestation for Clinical Ethics Consultants: A Two-Step Model from the American Society for Bioethics and Humanities. Hastings Center Report 43: 26–36. https://doi.org/10.1002/hast.198. Kon, A.A. 2016. Clinical Ethicists Have an Ethical Obligation to Create Professional Standards and a National Certification Process. American Journal of Bioethics 16: 30–32. https://doi.org/10. 1080/15265161.2015.1134706. Molewijk, B., G. Widdershoven, J. Vollmann, and J. Schildmann. 2016. What Quality Is Actually Assessed Within Written Records? American Journal of Bioethics 6: 48–50. https://doi.org/10. 1080/15265161.2015.1134709. Nilson, E.G., and J.J. Fins. 2006. Reinvigorating Ethics Consultations: An Impetus from the “quality” Debate. HEC Forum 18: 298–304. https://doi.org/10.1007/s10730-006-9020-3. Nilson, E.G., C.A. Acres, N.G. Tamerin, and J.J. Fins. 2008. Clinical Ethics and the Quality Initiative: A Pilot Study for the Empirical Evaluation of Ethics Case Consultation. American Journal of Medical Quality 23: 356–364. https://doi.org/10.1177/1062860608316729. Orr, R.D. 1996. Evaluation of an Ethics Consultation Service: Patient and Family Perspective. American Journal of Medicine 101: 135–141. https://doi.org/10.1016/S0002-9343(96)80067-2. Orr, R.D., and W. Shelton. 2009. A Process and Format for Clinical Ethics Consultation. Journal of Clinical Ethics 20: 79–89. Pearlman, Robert A., M.B. Foglia, E. Fox, J.H. Cohen, B.L. Chanko, and K.A. Berkowitz. 2016. Ethics Consultation Quality Assessment Tool: A Novel Method for Assessing the Quality of

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Ethics Case Consultations Based on Written Records. American Journal of Bioethics 16: 3–14. https://doi.org/10.1080/15265161.2015.1134704. Pearlman, R.A., D. Alfandre, B.L. Chanko, M.B. Foglia, and K.A. Berkowitz. 2018. Training to Increase Rater Reliability When Assessing the Quality of Ethics Consultation Records with the Ethics Consultation Quality Assessment Tool (ECQAT). Journal of Clinical Ethics 29 (4): 276–284. Repenshek, M. 2012. Continuous Quality Improvement Initiatives in Ethics: A Proposed Communication Tool. Health Care Ethics USA 20: 2–12. Singer, P.A., E.D. Pellegrino, and M. Siegler. 2001. Clinical Ethics Revisited. BMC Medical Ethics 2: 1–8. https://doi.org/10.1186/1472-6939-2-1. Tarzian, A.J., et al. 2013. Health Care Ethics Consultation: An Update on Core Competencies and Emerging Standards from the American Society for Bioethics and Humanities’ Core Competencies Update Task Force. American Journal of Bioethics 13: 3–13. https://doi.org/10.1080/ 15265161.2012.750388. Tarzian, A.J., L.D. Wocial, A.S. Lisa, A.H. Matheny Antommaria, S. Bean, K.A. Berkowitz, et al. 2015. A Code of Ethics for Health Care Ethics Consultants: Journey to the Present and Implications for the Field. American Journal of Bioethics 15: 38–51. https://doi.org/10.1080/ 15265161.2015.1021966. Wasson, K. 2016. A Call for Multiple Means of Assessing Quality in Clinical Ethics Consultation. American Journal of Bioethics 16: 44–45. https://doi.org/10.1080/15265161.2015.1134716.

Chapter 6

Historical Development of Clinical Ethics Consultation in Europe Ralf Jox and Stella Reiter-Theil

Abstract Clinical ethics consultation (CEC) in Europe originated with a certain delay compared to North America, but its historical development led to a rich array of diverse approaches, concepts and practices. While retracing its history, the authors highlight some of the important pioneers that paved the way of CEC in Europe. Today, European CEC faces significant challenges in establishing the practice especially in the Eastern and Southern regions of the continent, integrating the diverse philosophical traditions into CEC and assuring comparable quality of CEC, based on a close collaboration with CEC elsewhere in the world. Keywords History of clinical ethics · Pioneers · International perspective · Europe · Intercultural differences

6.1

Objectives

1. To inform an international readership about the historical development of CEC in Europe. 2. To acknowledge the work of European pioneers and their influence on CEC. 3. To highlight the variety of approaches to clinical ethics consultation across different countries and regions of Europe as well as their commonalities. This chapter will highlight some noteworthy issues in the history of CEC from a European perspective. We do not purport to offer a comprehensive account of the history of European CEC, which would be beyond the reach of such a chapter. As

R. Jox (*) Institute of Humanities in Medicine and Palliative and Supportive Care Service, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland e-mail: [email protected] S. Reiter-Theil Professor (em.) of Medical and Health Ethics, University Basel, Basel, Switzerland Department of Clinical Ethics, University Hospitals Basel, Basel, Switzerland © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_6

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clinical ethics consultants who have witnessed and contributed to the development of European CEC during our careers, we present a collection of facts and insights about the development of clinical ethics in Europe. Of course, any account of history is colored by personal observations and we cannot deny our regional and language influence on our views.

6.2

Case Example (From the Late 1990s)

The family members of an elderly hospitalized patient suffering from terminal cancer requested ethics support. Against the patient’s explicit refusal and despite her decisional capacity, the doctor insisted on invasive diagnostics (coloscopy) and, in case of abdominal obstruction, surgery. Respect for the patient’s autonomy was established during the ethics consultation and palliative care was initiated. This was the first ethics consultation requested by a patient’s family at the time. Its problemsolving effect was much appreciated by the patient, the family and, especially, by some skeptical opinion leaders in the respective hospital (Reiter-Theil 2003). However, still today only a minority of consultations is triggered by the demands of patients and their families.

6.3

How It All Began in Europe

Culturally, Europe is a very heterogeneous continent with a rich and multifaceted history. This diversity was even higher several decades ago, i.e. before 1989, when Europe was still divided between the communist East and the capitalist West and when the European Union had not yet adopted the contract of Maastricht (1992). In general, the origins of CEC are intertwined with the general rise of modern bioethics and medical law in the second half of the twentieth century, responding to an increasing imbalance between a growing awareness of ever more ethical questions raised by technological progress in medicine, and the insufficiency of traditional moral orientation hitherto provided by churches, political ideologies, or professional (deontological) codes. The idea to develop explicit ethical deliberation within healthcare originated in the context of an interplay between bottom-up initiatives by clinicians, often supported by academics from philosophy, theology or law, and top-down directives by professional, juridical or political institutions. In the US, examples of such bottom-up initiatives were the Admissions and Policy Committee at the Swedish Hospital in Seattle, set up by Belding Scribner in 1962 to orient rationing decisions for the use of the newly developed renal dialysis (Aulisio 2016), or the development of clinical medical ethics work at the University of Chicago by Mark Siegler and others (Weiss Roberts and Siegler 2017). Such initiatives were reinforced by the recommendation of the New Jersey Supreme Court in its judgment on the Karen Ann Quinlan case that hospitals should have advisory

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ethics committees (Aulisio 2016) and the report of the 1983 report of the Presidential Commission for the study of ethical problems in medicine and biomedical and behavioral research (President’s Commission 1983). The same pattern emerged in the early days of CEC in Europe, but with a certain delay compared to the US, and in each European country with a different path and pace. Following several waves of public debate on end-of-life ethics, reproductive ethics and transplantation ethics in the 1970s and 1980s, the first local clinical ethics initiatives emerged. In Switzerland, for example, the psychiatric hospital in Muensingen near the capital Bern created a clinical ethics committee in 1988 (Kaiser 2009). In Germany, the development of CEC also began in the 1980s. It was driven by personalities who had experienced CEC in the US, brought the idea to Europe and then substantially nourished the development by interdisciplinary contacts between clinicians, theologians, lawyers, psychologists, and philosophers. In the early 1990s, local initiatives at university medical centers played a key role in advancing CEC. This development was particularly fueled by a joint recommendation of the German Protestant Hospital Association and the Catholic Hospital Association of Germany in 1997, calling for the creation of hospital ethics committees (HECs) (Bruns 2012; Doerries et al. 2010). After years during which such committees existed formally, but often without much practice or expertise, hundreds of committee members were trained, and confessional hospitals have by now the highest frequency of established ethics support structures in Germany (Doerries et al. 2010). Strikingly, in the pioneer days of CEC there was not yet a clear distinction between clinical ethics committees and research ethics committees (called “institutional review boards” in the US). In France, for example, research ethics committees gradually took up clinical advisory activities during the 1980 and 1990s (Chevrolet 2002), but the lack of distinct structures led to a still deplored distance between academic bioethics and healthcare practice in France (Orfalli 2003). The same joint development of committees for research and clinical ethics took place in The Netherlands and Belgium (van der Kloot Meiburg and ter Meulen 2001; Meulenbergs et al. 2005). In Italy, these joint research and clinical ethics committees still exist today (De Panfillis et al. 2019). In Eastern European countries, CEC only developed after the collapse of the Warsaw Pact in 1991, rather as a top-down response to legal regulations, focusing largely on research ethics or administrative issues (Orzechowski et al. 2020). Even in those European countries that have a thriving CEC scene today, as in Switzerland, Germany, or The Netherlands, the development was rather sluggish in the first decades accelerating only after 2000. In Switzerland, the acceleration only came when the Swiss Academy of Medical Sciences published a recommendation in 2012 that every healthcare institution should establish an ethics structure and invest resources into its work (SAMW 2012). The Swiss university hospitals, e.g. Basel (Reiter-Theil 2016; Reiter-Theil and Schuermann 2016), complied and presented themselves comparatively well-equipped at an international conference in 2019.1

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Pioneers’ Work and Influence

Thinking of early trail blazers for CEC in Europe several bioethicists come to mind: Henk ten Have (The Netherlands), Tony Hope and Anne Slowther (UK), Hans Martin Sass, Gerd Richter and Stella Reiter-Theil (Germany). Early on, since the foundation of his center in 1986, Sass initiated a strong dialogue between clinicians and bioethicists at his home university of Bochum (Germany), stimulated by his work at Georgetown University (Washington DC), not yet using explicit clinical ethics terminology or establishing structures like ethics committees at the time (Hinrichsen and Sass 1996). While these pioneers have been productive in publishing as well as in stimulating practices of clinical ethics support in their respective institutions, one difficulty in identifying pioneers is that others may not have left written traces available through literature searches. One such key figure in Europe was certainly the theologian Franz Boeckle. In his early career in Switzerland, he criticized moral theology for failing to give orientation to those struggling with practical dilemmas. Later, as a professor of theology in Bonn, Germany, he discussed clinical ethical issues with clinicians, benefitting from his experience as a hospital chaplain. Henk ten Have’s article ‘The Hyperreality of Clinical Ethics: A Unitary Theory and Hermeneutics’ (1994) was an early contribution from The Netherlands to the development of CEC in Europe. At the same time, CEC started to be practiced in various forms in Germany, too. It was not always bioethicists who introduced CEC: in Freiburg (Germany) it was the director of critical care medicine, Hanjoerg Just, who began inviting colleagues from the university hospital’s ethics center to the bedside for ethics consultation. This move became visible in the first thematic issue of German journal “Ethik in der Medizin” (Ethics in Medicine) in 1999 (Reiter-Theil and Illhardt 1999). Another early model practiced in Marburg, Germany, at the same time followed US clinical pragmatism (Gerdes and Richter 1999). The Freiburg approach was transferred and transformed into the Basel approach later (Reiter-Theil 1999, 2000). Some roots of European CEC are revealed by Fins et al. (1997) through a comparison of four methods of ethics support including clinical pragmatism. Steinkamp and Gordijn (2003) suggested integrating clinical pragmatism into a more comprehensive framework, complemented by approaches such as a the Socratic dialogue, hermeneutics or the Nijmegen method. The mentioned reports cover predominantly in-patient medical care, rarely the outpatient setting, and focus on acute somatic care, especially in critically ill patients. Although the history of psychiatry is full of ethical issues, no publication was found describing specific clinical ethics activities in European psychiatry earlier than Hoeger and colleagues (Hoeger et al. 1997; Reiter-Theil et al. 2014). After 2006, however, the Dutch group around Guy Widdershoven and Bert Molewijk started to publish their approach of moral case deliberation, particularly practiced in psychiatry and nursing (Abma et al. 2006; Reiter-Theil et al. 2014).

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Variety and Commonalities of European Approaches

This section will explain the current state of clinical ethics in Europe, including its enormous diversities and commonalities that may distinguish it from CEC in North America. In Germany, for example, a full survey of all hospitals in 2014 found that half claimed to have some ethics support structures (Schochow et al. 2019). A similar national survey in Switzerland reported a prevalence of 42% of CEC structures in hospitals (Ackermann et al. 2016). For most other European countries such data are not published or do not even exist. From our own personal experience based on conferences, publications, and personal discussions it is likely that CEC is more developed in Central Europe (esp. Germany, Switzerland) and in Northern Europe (e.g. UK, parts of Scandinavia, The Netherlands) than in Southern Europe (e.g. Spain, Portugal, Greece) and Eastern Europe (e.g., Poland, Czech Republic, Slovakia, Hungary). We hypothesize that the development of clinical ethics is very much fostered by having a critical mass of institutions and people who engage in CEC; this difference could also partially explain why the German speaking Academy for Ethics in Medicine – located in a densely populated area – is evidently the only medical ethics association in Europe with an existing certification procedure for clinical ethicists, based on national CEC standards and training guidelines (www. aem-online.de). Owing to its post-war history in the second half of the twentieth century, Germany is also a country that has largely integrated analytical and pragmatist philosophical models from the US and the UK, especially in academic bioethics, facilitating the implementation of Anglo-American models of CEC in Germany. In contrast, French bioethics, for example, is much more influenced by phenomenology, ethics of care, existentialism, hermeneutics, and narrative approaches. In a yet unpublished survey among participants of the International Conference on Clinical Ethics Consultation (ICCEC) (Jox, unpublished data), it is apparent that the conceptual models and protocols used for CEC vary widely in the clinical ethics community and can be traced back to different philosophical and cultural traditions or to clinical ethics pioneers who promoted a certain model not necessarily coherent with the philosophical traditions of the respective country. In The Netherlands, for example, both the Nijmegen method, inspired by an analyticalpragmatist culture, and moral case deliberation, inspired by hermeneutics, co-exist alongside each other (Steinkamp and Gordijn 2003; Abma and Widdershoven 2006). Such tolerant co- existence and even integration of diverse approaches was also described in an earlier overview on Swiss CEC (Hurst et al. 2008). Notwithstanding these variations within Europe, there are also commonalities between European CEC approaches that may distinguish them from North American CEC. First, the dominant organizational model in Europe is the clinical ethics committee (not the liaison service), composed of healthcare professionals who discuss individual cases in their meetings or send some of their members to the bedside, both as individuals or small teams of two or three members (Schochow et al. 2019). Only large academic (university) hospitals employ professional clinical ethicists. In doing CEC, these clinical ethicists mainly advise healthcare staff and

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rarely interact directly with patients and their families. In Europe, CEC is seldom conceptualized according to the medical consultation model, and the role of the ethics consultants is usually viewed as one of helping professionals and patients/ families to find a solution themselves via facilitation, rather than offering moral solutions or recommendations according to an “authoritarian” or “directive” approach (Reiter-Theil 2000, 2009; Reiter-Theil and Schuermann 2016). Basic elements of discourse ethics (Habermas 1991; Kettner 2006) have played an important role in Europe: even in circles beyond academic philosophers, the ideas of a mutual dialogue between equals, or “non-hierarchical discourse,” as a space of solving moral problems has become known and gained importance. Over the last years, there seems to be a development of convergence in clinical ethics, both between European countries and on a global scale, fostered by joint platforms such as the European Clinical Ethics Network (ECEN) or the International Conference on Clinical Ethics and Consultation series (ICCEC), but also by the accelerated globalization in the era of social media. Even the tragic Covid-19 pandemic has triggered quite a creative development in clinical ethics practice, e.g. by offering ethics consultation virtually or pushing the field to rapidly organize itself in mailing lists and national or international video conferences with dozens of participants who urgently discussed how clinical ethics should respond to the crisis.

6.6

Conclusions

Clinical ethics consultation has developed since the 1980s in various European countries, based on pioneers who had a distinctive international and interdisciplinary outlook. Today, CEC is quite heterogeneously established in European regions, using a variety of philosophical approaches and organizational formats.

References Abma, Tineke A., and Guy A. Widdershoven. 2006. Moral deliberation in psychiatric nursing practice. Nursing Ethics 13: 546–557. Ackermann, Sibylle, L. Lukas Balsiger, and Michelle Salathé. 2016. Ethikstrukturen an Akutspitälern, Psychiatrischen Kliniken und Rehabilitationskliniken der Schweiz. Bioethica Forum 9 (2): 52–59. Aulisio, Mark P. 2016. Why Did Hospital Ethics Committees Emerge in the US? AMA Journal of Ethics 18 (5): 546–553. Bruns, Florian. 2012. Ethikberatung und Ethikkomitees in Deutschland. Eine Bestandsaufnahme. In Ethikberatung in der Medizi, ed. Andreas Frewer, 20–31. Berlin/Heidelberg: Springer. Chevrolet, Jean-Claude. 2002. Les comités locaux d’éthique clinique hospitaliers. Revue Médicale Suisse 2: 22451. De Panfillis, Ludovica, Domenico FrancoMerlo, Roberto Satolli, Marta Perin, Luca Ghirotto, and Massimo Costantini. 2019. Clinical Ethics Consultation Among Italian Ethics Committee: A Mixed Method Study. PLoS One 14 (12): e0226710.

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Doerries, Andrea, Alfred Simon, Gerald Neitzke, and Jochen Vollmann. 2010. Implementing Clinical Ethics in German Hospitals: Content, Didactics, and Evaluation of a Nationwide Postgraduate Training Programme. Journal of Medical Ethics 36: 721–726. Fins Joseph, J., Matthew D. Bacchetta, and Franklin G. Miller. 1997. Clinical pragmatism: A method of moral problem solving. Kennedy Inst Ethics 7 (2): 129–145. https://doi.org/10.1353/ ken.1997.0013. Gerdes, Burkhard, and Gerd Richter. 1999. ‘Ethik-Konsultationsdienst nach dem Konzept von J.C. Fletcher an der University of Virginia, Charlottesville, USA. Ein Praxisbericht aus dem Klinikum der Philipps-Universität Marburg. Ethik in der Medizin 11: 249–261. Habermas, Juergen. 1991. Moral Consciousness and Communicative Action. Cambridge: MIT Press. Hinrichsen, Klaus V., and Hans Martin Sass. 1996. Zehn Jahre Zentrum fuer Medizinische Ethik. Medizinethische Materialien Heft 100. Online at https://www.ruhr-uni-bochum.de/malakow/ mam/zme/materialien/mm-100.pdf. Accessed 11 Aug 2020. Hoeger, Christoph, Stella Reiter-Theil, Ludwig Reiter, et al. 1997. Fallbezogene ethische Reflexion. Ein Prozessmodell zur Ethik-Konsultation in der Kinderpsychiatrie und Psychotherapie. System Familie 10: 174–179. Hurst, Samia, Stella Reiter-Theil, Ruth Baumann-Hoelzle, et al. 2008. Growth of Clinical Ethics in a Multilingual Country: Challenges and Opportunities. Bioethica Forum 1 (1): 15–24. Kaiser, Helmut. 2009. Ethik in der aktuellen Psychiatrie. Online at https://www.be-hilfsverein.ch/ media/1038/ethik2009.pdf. Accessed 30 Mar 2020. Kettner, Matthias. 2006. In Discourse Ethics. Appel, Habermas and Beyond. In Bioethics in Cultural Contexts, ed. Christoph Rehmann-Sutter, 299–318. Heidelberg: Springer. Meulenbergs, Tom, Josef Vermylen, and Paul T. Schotsmans. 2005. The Current State of Clinical Ethics and Healthcare Ethics Committees in Belgium. Journal of Medical Ethics 31: 318–321. Orfalli, Kristina. 2003. L’émergence de l’éthique clinique: politique du sujet ou nouvelle catégorie clinique? Science sociales et santé 21 (2): 39–70. Orzechowski, Marcin, Maximilian Schochow, and Florian Steger. 2020. Clinical Ethics Consultation in the Transition Countries of Central and Eastern Europe. Science and Engineering Ethics 26: 833–850. Reiter-Theil, Stella. 1999. Ethik in der Klinik – Theorie für die Praxis: Ziele, Aufgaben und Möglichkeiten des Ethik-Konsils. Ethik in der Medizin 11 (4): 222–232. ———. 2000. Ethics Consultation on Demand: Concepts, Practical Experiences and a Case Study. Journal of Medical Ethics 26 (3): 198–203. ———. 2003. Balancing the Perspectives. The Patient’s Role in Clinical Ethics Consultation. Medicine, Health Care and Philosophy 6: 247–254. ———. 2016. Initiating and Maintaining Clinical Ethics Support in Psychiatry. Ten Tasks and Challenges – And How to Meet Them. Clinical Ethics 11 (2-3): 45–53. Reiter-Theil, Stella, and Franz Josef Illhardt. 1999. Initiative for Ethics Consultation in Medicine. Ethik in der Medizin 11 (4): 219–221. Reiter-Theil, S. 2009. Dealing with the normative dimension in clinical ethics consultation. Cambridge Quarterly Healthcare Ethics 18 (4): 347–346. Reiter-Theil, Stella, and Jan Schuermann. 2016. The ‘big five’ in 100 Clinical Ethics Consultation Cases. Evaluating Three Years of Ethics Support in the Basel University Hospitals. Bioethica Forum 9 (2): 12–22. Reiter-Theil, Stella, Jan Schuermann, and Klaus Schmeck. 2014. Klinische Ethik in der Psychiatrie: State of the Art. Psychiatrische Praxis 41 (07): 355–363. SAMW. 2012. Ethics Support in Medicine. Swiss Academy of Medical Sciences. Online at https:// www.samw.ch/en/Publications/Medical-ethical-Guidelines.html. Accessed 11 Aug 2020. Schochow, Maximilian, Dajana Schnell, and Florian Steger. 2019. Implementation of Clinical Ethics Consultation in German Hospitals. Science and Engineering Ethics 25: 985–991.

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Steinkamp, Norbert, and Bert Gordijn. 2003. Ethical Case Deliberation on the Ward. A Comparison of Four Methods. Medicine, Health Care and Philosophy 6: 235–246. ten Have, Henk. 1994. The Hyperreality of Clinical Ethics: A Unitary Theory and Hermeneutics. Theoretical Medicine 15 (2): 113–131. Van der Kloot Meijburg, H.H., and Ruud ter Meulen. 2001. Developing Standards for Institutional Ethics Committees: Lessons from the Netherlands. Journal of Medical Ethics 27 (suppl I): i36– i40. Weiss Roberts, Laura, and Mark Siegler. 2017. Clinical Medical Ethics. Landmark Works of Mark Siegler, MD. Cham: Springer.

Chapter 7

Clinical Ethics Consultation in Germany: History, Current Status and Models of Training Gerald Neitzke and Alfred Simon

Abstract In Germany, clinical ethics consultation (CEC) has developed over the past 20 years into a well-established professional service, particularly in German hospitals, but with growing frequency and impact also in nursing homes and out-patient facilities. The most common organizational form is a “clinical ethics committee” of five to twenty members. Clinical ethics committees are engaged in individual case consultations (both prospective and retrospective), in the development of ethics guidelines and policies for the hospital, and in open sessions for training and exchange about ethical issues in the healthcare institution. From the very beginning, the development and implementation of ethics consultation services has strongly been influenced and supported by the Academy of Ethics in Medicine (AEM), the German association for medical ethics. AEM started several national training programs for ethics consultants, implemented a curriculum for ethics consultation, and is offering a process of certification for individuals to prove their qualification in the field of ethics consultation. AEM provided national standards for ethics consultation and passed recommendations and guidelines on pivotal issues: How to document individual case consultations, how to evaluate ethics consultation services and use the evaluation for quality improvement (QI), and how to develop and implement ethics guidelines and policies for the healthcare institution. Keywords Clinical ethics committee · Germany · National standards · Guidelines · Curriculum · Training programs · Certification

G. Neitzke (*) Hannover Medical School, Hannover, Germany e-mail: [email protected] A. Simon Academy of Ethics in Medicine, Göttingen, Germany © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_7

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Objective

1. To describe how CEC has developed over the past 20 years into a professional and well-established service in clinical medicine in Germany. 2. To describe the dominant approach to ethics consultation in hospitals, which is in the form of clinical ethics committees. 3. To examine the national standards set by the German Academy of Ethics in Medicine (AEM) including training programs, guidelines and certification of ethics consultants and their impact on the field.

7.2

Case Study

A 60-year-old male patient was diagnosed six months ago with a malignant lymphoma, which usually has a good chance of recovery. However, the patient physically does not tolerate chemotherapy. Life-threatening complications arise, so that the therapy has to be discontinued. Mild chemotherapy, however, shows no effect: Tumors continue to grow despite therapy. In the course of the disease, several vital organs begin to fail. The patient needs and receives artificial ventilation and dialysis; circulation can only be maintained by administering appropriate intravenous medication. After several weeks without any improvement, physicians consider a limitation of intensive care measures, as they are convinced that these will not help the patient but only prolong his dying. The patient’s relatives (wife and daughter) cannot believe that medical options are exhausted and demand that the therapy be continued and even intensified. Since the treatment team and relatives cannot reach an agreement, an ethical case discussion takes place, in which the treating oncology and intensive care physicians, the responsible nurse and the relatives participate. The discussion is moderated by two members of the clinical ethics committee. The relatives report that the patient believed in the possibility of curing the disease, until the very end. However, he had also repeatedly said that he did not want to suffer needlessly. In the course of the conversation it is worked out that intensive therapy does not benefit the patient and cannot prevent his foreseeable death. Therefore it is neither medically sensible nor in the patient’s best interest. In the end, the relatives can agree to a limitation of therapy, which is implemented shortly afterwards. The patient dies peacefully in the presence of his relatives.

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7.3

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Development of Clinical Ethics Consultation in Germany

In Germany, CEC started as an institutional movement in the year 1997, when both the Catholic and Protestant German Hospital Associations published a joint policy statement (KKVD, and DEKV 1997). In this brief publication the development of clinical ethics in North America was acknowledged, the differences regarding Institutional Review Boards (IRBs, in German: Ethikkommission) were explained and the term “Klinisches Ethik-Komitee”, or “clinical ethics committee”, was coined, which remains the most commonly used name for such boards in Germany. The statement comprises several explicit and specific recommendations, which nonetheless were not binding for member hospitals. Recommendations suggested implementing ethics committees of up to 12 members both for single case consultations, general ethical issues and ethics guidelines in the hospital. Before 1997, only very few and heterogeneous services for ethical guidance existed within the German healthcare system. In some University Hospitals, academic bioethicists had started a one-person consultation service, in others small committees had been established in a rather ad hoc manner and without national or regional precedence. From the beginning, the developing field of CEC, in the broader sense, and the implementation of ethics committees in particular, was supported and promoted by the Academy of Ethics in Medicine (AEM), which is the German association for medical ethics. Within AEM a work group on CEC was founded, which was open for all scholars and practitioners in the field. The group focused on matters of standardization and national recommendations concerning ethics consultation (cf. 7.4, 7.5), issues of curriculum development (cf. 7.6), and implementation of training opportunities (cf. 7.7). Today the work group is also responsible for establishing certification criteria for clinical ethics consultants and the process of certification itself (cf. 7.8). The development of CEC was also supported by the German Medical Association, which passed recommendations in 2006 (BÄK 2006). The ethics body of BÄK strongly advised hospitals to implement clinical ethics committees. Accordingly, the number of ethics committees in Germany was growing after 2006. The field flourished further when associations for hospital certification decided to check for ethics consultation services within the process of hospital certification. In Germany, an ethics committee is not a mandatory requirement for hospital accreditation. Nevertheless an estimate of 70% of all German hospitals provides some kind of ethics consultation, mostly in the form of a Clinical Ethics Committee.

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National Standards for Ethics Committees

In the developing field, AEM took responsibility for national guidance and support. The underlying strategy was to maintain and promote diversity among services without giving up the idea of unity, where appropriate. AEM did not want to discourage developing models of and initiatives for ethics consultation. A goldstandard was clearly not at hand at that time, and best practice models should get a fair chance to develop and prove their respective qualities. Unity was rather necessary to establish minimal standards. As a recommendation, AEM passed national ‘standards for ethics consultation’ in 2010, which are minimal standards for ethics committees (AEM 2010). Main goals of ethics services are: to raise awareness of moral issues in the healthcare institution, education and training in clinical ethics, and to increase and enhance the competencies of clinical staff in dealing with ethical issues. The suggested main tasks of an ethics committee are: individual case consultations (on request), developing ethics guidelines and policies (for the healthcare institution), and organizing in-house and open sessions for training and exchange about ethical issues. Specific recommendations touched the process of implementation of ethics support services: For successful and sustainable implementation of these services, both bottom-up and top-down are preferred, and a close connection to the board of hospital directors is recommended. A budget for the ethics services should be negotiated. Members of an ethics committee should cover the whole range of professions within hospital staff, and also include community members, such as patient representatives (Neitzke 2009). It was regarded necessary to fix the regulations and standing orders of the respective services as official statutes of the committee.

7.5

Recommendations and Guidelines for Ethics Consultation Services

In Germany, the most common organizational form for ethics consultation is a clinical ethics committee. In a typical hospital, the ethics committee has six to twenty members (depending on the size of the hospital) from different professional backgrounds, including external members (Neitzke 2009). Most of the members are qualified to conduct case consultations. Within a case consult, there are usually two to three members of the ethics committee present – for methodological reasons, a one-person consultation is considered inappropriate in most hospitals. So, usually, an ethics consultant is committee-based and requests for consultation are addressed to the committee. After the consultations the consulting group brings the cases back to the committee for retrospective analysis and feedback.

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From around 2010 to 2015 the work group on ethics consultation of AEM established a series of national recommendations. The main reasons for this endeavor were comparability of services and QI of ethics committees. These recommendations covered the following topics: documentation of case consultations (Fahr et al. 2011), evaluation of CEC services (Neitzke et al. 2013), and the development, implementation and significance of ethics guidelines in the hospital (Neitzke et al. 2015). The documentation of case consultations is crucial for the impact on patient care. Only if ethics consultation has an impact on clinical decisions will hospital staff take the time for a comprehensive discussion of the case and its moral aspects. The decisions and results of the consultation become transparent to all people, who engaged in the consultation (usually including the patient and/or his legal representative and relatives), but also for staff members who could not be present. It is recommended that a report or protocol is written which includes at least the following information: setting of the consultation (who, where, when), the controversial issue, the consensus found or the disagreement remaining on the ethical issue, and the main moral arguments in favour of the consensus negotiated. The report or protocol is part of the patient’s medical record and therefore accessible both for the attending clinical teams and the patient and his or her representatives. Apart from individual consultations protocols, documenting all the work done by the ethics committee in an annual report is recommended. This annual report underlines and provides evidence (or a record) of the significance of CEC and support both within and outside the hospital. Evaluation of ethics consultation is understood as part of its QI. The goals and methods of evaluation have to be considered in the light of both the initiator and the receiver of its results. Both external and internal modes of evaluation, and the application of qualitative and quantitative methods, should be considered. Evaluation is not an end in itself, but data should be used to improve quality of services continuously. In Germany, many ethics committees started to develop ethics guidelines for the hospital. In fact, many committees worked on similar topics separately. The national guidance commented on these endeavors and recommended having an open and transparent drafting process. This approach helps keep the guidelines pragmatic, focussed, and relevant, and increases their acceptance within clinical staff. Formal implementation by hospital management is a necessary step, and education about the content of the guidelines and their application to everyday clinical decision making should be offered to clinical staff. This way, ethics guidelines become an integral part both of the hospital ethos and of everyday clinical routines. In Germany, guidelines frequently touch end-of-life issues, such as advance directives, withdrawal of treatment, PEG-tubes, palliative sedation, DNR-orders, but also broader issues, such as informed consent, (inter)cultural issues, justice and allocation.

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Curriculum for Ethics Consultation in Healthcare

Well qualified ethics consultants are an essential prerequisite for successful ethics consultation. A work group of AEM published the first curricular recommendations for ethics consultation in hospitals in 2005 (Simon et al. 2005). These were based on the experience that the members of the working group had gained during their individual training courses for members of clinical ethics committees and pursued the goal of training people with different professional backgrounds (medicine, nursing, pastoral care, social services, law, and patient representatives) to become independent and competent ethics consultants. The curricular recommendations distinguished between a basic course and advanced courses. In the first course (30–40 h of teaching), basic knowledge in the areas of ethics, organization and counseling should be imparted and practical skills, such as recognizing an ethical problem or moderating an ethical case discussion, should be practised. The advanced courses, in turn, should serve to deepen the knowledge and skills acquired in the basic course in terms of content and methodology. Especially against the background of the certification for ethics consultation in healthcare, offered by AEM since 2014, it was necessary to revise fundamentally the curricular recommendations of 2005. The revised recommendations were published in 2019 as Curriculum Ethics Consultation in Healthcare (AEM 2019).

7.7

National Training Programs for Ethics Consultation

The publication of the curriculum in 2005 was an important stimulus or impulse for the establishment of training programs for ethics consultation in Germany. Corresponding programs are now offered by various trainers throughout Germany in the form of external or in-house courses. To illustrate this, one of these programs shall be presented in detail, in which the two authors have been engaged for many years as co-operation partners. The Hannover Qualification Programme on Ethics Consultation was founded in 2003 by four co-operating academic and non-academic institutions and is the longest running training program for ethics consultants in Germany (Dörries et al. 2010). It includes a basic course and various optional advanced courses. In addition, regular refresher courses are offered to graduates of the basic and advanced modules. The courses take place in Hannover in a non-academic setting and involve lectures, case discussions and deliberations and role play (Dörries et al. 2010). From 2003 to 2019, almost 1200 people attended this qualification program, the vast majority of whom not only attended one of the 22 basic courses but also one or more of the 36 advanced courses or the six refresher courses. Oral and written evaluation indicate a high degree of satisfaction with the program and affirmation of its content and didactics among the vast majority of participants. In an anonymous survey, former participants also stated that they were well able to apply the

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knowledge and skills they had acquired during the program to the implementation or further development of ethics consultation services at their hospital, and that they felt well prepared and competent to moderate ethics case deliberations (Dörries et al. 2014).

7.8

Certification of Ethics Consultants

Until a few years ago, there were no guidelines in Germany as to which qualifications an ethics consultant had to acquire. For this reason, the AEM, as the responsible professional association, developed three levels of competencies for ethics consultation in healthcare (AEM 2015). These levels were established in addition to the curricular recommendations of that time, in which theoretical knowledge and practical skills were defined, that active members of ethics consultation services should at least acquire. Depending on the degree of qualification and training, the following levels were defined: • Level 1: Ethics Consultant in Healthcare (target group: ethics consultants, e.g. members of an ethics committee) • Level 2: Coordinator for Ethics Consultation in Healthcare (target group: chairs of an ethics consultation service) • Level 3: Trainer for Ethics Consultation in Healthcare (target group: people who conduct training courses for ethics consultants) On the basis of these levels of competency, the AEM has been offering voluntary Certification for Ethics Consultation in Healthcare since autumn 2014. The formal and content-related requirements for courses that qualify for the various competence levels were specified in more detail in the new Curriculum Ethics Counselling in Healthcare published in 2019, so that uniform standards now exist in Germany. To acquire a level 1-certificate, a training of 45 h must be completed, covering theoretical topics and a practical training for case discussions. Furthermore, practical experience from real cases is required within the following three years. In addition, a level 2-certificate needs additional advanced courses of at least 30 h. Level 3 is a trainer for ethics consultation. This requires studies in the field of ethics amounting to 10 credit points (ECTS), further qualifications in communication and adult education, an active participation in 20 ethics case consultations, and in the implementation of ethics services. Up to now (July 2020), 1255 people have been certified for level 1, 105 for level 2 and an additional 72 qualified as trainers (level 3). The applications received are reviewed by independent reviewers who are themselves certified ethics consultants.

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Ethics Consultation in Out-Patient Facilities and Nursing Homes

In addition to hospital based CEC, the first projects of ethics consultation in out-patient facilities and nursing homes have been established in recent years in Germany. Since nursing homes are mostly too small to implement an ethics committee of their own, ethics consultation is often provided by joint ethics committees: They use existing associations and collaborations at regional levels or within a trust/ corporation at the level of their respective institutional bodies (Coors et al. 2015). In out-patient facilities, the first projects have emerged in the context of palliative care structures, but are now also carried out in cooperation with regional medical associations (Seifert et al. 2018). One specific feature of ethics consultation in out-patient facilities is the lack of a superordinate structure, such as an institution or a common, responsible, institutional body, which appoints and commissions the members of the ethics committee. The committee itself is not part of an institution, but represents an external consultation service that is commissioned and legitimized only by the persons seeking advice themselves. Obligations, commitment, responsibility, and confidentiality have to be administered in a different manner, compared to a hospital setting. Reliable data on the number of ethics consultation services in out-patient facilities and nursing homes is currently not available in Germany. A survey conducted by AEM in autumn 2018 revealed about 40 established projects and 10–15 other projects still in the planning or establishment phase (Seifert 2019). Networking both among these facilities and between clinical and out-patient ethics support services is one of the challenges for the next years.

7.10

Conclusion

Summing up, ethics consultation has become a highly professionalized and well established feature of clinical medicine in Germany. There are still some blank areas on the map, but the majority of hospitals have an ethics committee available. Many ethics committees are an active and supplemental part of clinical medicine. In some hospitals, though, there is still little routine in case requests and ethics consultations. Nevertheless most German ethicists are reluctant to make ethics consultation compulsory for certain clinical decisions (e.g., withdrawal of therapy). Ethics consultation is methodologically based in the openness and frankness of participants to engage in a moral discourse, concerning different treatment options. A fair consultation is not supported by legal obligations, but rather by the conscientious staff and family members deliberating about the moral decisions to be made with and for the patient.

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References AEM. 2010. Standards für Ethikberatung in Einrichtungen des Gesundheitswesens. Ethik in der Medizin 22: 149–153. ———. 2015. Zertifizierung von Ethikberatung. https://aem-online.de/index.php?id¼64. Accessed 28 Apr 2020. ———. 2019. Curriculum Ethikberatung im Gesundheitswesen. https://www.aem-online.de/ fileadmin/user_upload/Curriculum_Ethikberatung_im_Gesundheitswesen_2019-06-24.pdf. Accessed 18 Mar 2020. BÄK. 2006. Zentrale Ethikkommission (ZEKO) bei der Bundesärztekammer. Stellungnahme der ZEKO zur Ethikberatung in der klinischen Medizin. Dtsch Ärztebl 102: A1703–A1707. Coors, Michael, Alfred Simon, and Mark Stiemerling, eds. 2015. Ethikberatung in Pflege und ambulanter Versorgung. Modelle und theoretische Grundlagen. Lage: Jacobs. Dörries, Andrea, Alfred Simon, Gerald Neitzke, and Jochen Vollmann. 2010. Implementing Clinical Ethics in German Hospitals: Content, Didactics and Evaluation of a Nationwide Postgraduate Training Programme. Journal of Medical Ethics 36: 721–726. Dörries, Andrea, Alfred Simon, Jochen Vollmann, and Gerald Neitzke. 2014. The Impact of an Ethics Training Programme on the Success of Clinical Ethics Services. Clinical Ethics 9: 36–44. Fahr, Uwe, Beate Herrmann, Arnd T. May, Antje Reinhardt-Gilmour, and Eva Winkler. 2011. Empfehlungen für die Dokumentation von Ethik-Fallberatungen. Ethik in der Medizin 23: 155–159. KKVD, and DEKV. 1997. Ethik-Komitee im Krankenhaus. https://www.ev-medizinethik.de/meta_ downloads/9856/dekv_-_ethik-komitee.pdf. Accessed 28 Apr 2020. Neitzke, Gerald. 2009. Patient Involvement in Clinical Ethics Services: From Access to Participation and Membership. Clinical Ethics 4: 146–151. Neitzke, Gerald, Annette Riedel, Stefan Dinges, Uwe Fahr, and Arnd T. May. 2013. Empfehlungen zur Evaluation von Ethikberatung in Einrichtungen des Gesundheitswesens. Ethik in der Medizin 25: 149–156. Neitzke, Gerald, Annette Riedel, Lilo Brombacher, Wolfgang Heinemann, and Beate Herrmann. 2015. Empfehlungen zur Erstellung von Ethik-Leitlinien in Einrichtungen des Gesundheitswesens. Ethik in der Medizin 27: 241–248. Seifert, Carola, Alfred Simon, and Kurt Schmidt. 2018. Ambulante Ethikberatung in Deutschland. https://www.laekh.de/images/Hessisches_Aerzteblatt/2018/04_2018/Langversion_Amb_ Ethikberatung_Seifart.pdf. Accessed 28 Apr 2020. Seifert, Carola. 2019. Positive Entwicklung der Ambulanten Ethikberatung. Hessisches Ärzteblatt. https://www.laekh.de/images/Hessisches_Aerzteblatt/2019/03_2019/Haebl_03_ 2019.pdf. Accessed 28 Apr 2020. Simon, Alfred, Arnd T. May, and Gerald Neitzke. 2005. Curriculum ‚Ethikberatung im Krankenhaus‘. Ethik in der Medizin 17: 322–326.

Chapter 8

Innovation or Stagnation? The State of Art of Clinical Ethics Support in Switzerland Rouven Porz, Hubert Kössler, and Urs Mosimann

Abstract This text locates the professionalization of Clinical Ethics in Switzerland as dependent on Swiss ‘culture’. It shows that in this development there are core values such as societal responsibility, self-determination and the desire for consensus that have helped shape the methods and structures of Clinical Ethics in Switzerland. It also asks critically how this development of Clinical Ethics is now progressing in this country. The fact that up to now no demonstrable ethics training or further continuing education has been required to engage in ethics in hospitals raises the question of a possible stagnation of professionalized ethics. These leads us to suspect that the discipline of Clinical Ethics is nowhere near the level of professionalization that it could be. The Swiss ethicists should have the confidence to reflect upon their daily activity as ethicists, in terms of epistemology and scientific theory. Keywords Clinical ethics support · Ethics consultation · Switzerland · Challenges · Professionalization · Innovation and stagnation

8.1

Objectives

1. To describe Switzerland as a contextual factor with its own culture and values as a setting for clinical ethics consultation. 2. To illustrate how “Clinical Ethics Support” has developed in this context. 3. To examinate current challenges in the further professionalization of Clinical Ethics in Switzerland.

R. Porz (*) · H. Kössler · U. Mosimann Medical Ethics and Medical Professional Education, Medical Directorate, Insel Gruppe, Inselspital, University Hospital Bern, Bern, Switzerland e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_8

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Introduction

Clinical Ethics Consultation1 (CEC) in Switzerland has grown over the last 20 years; however, it is currently unclear whether or how it can be further professionalized. For example, there is a lack of continuing professional training for members of Clinical Ethics Committees, and often the ethicists attached to individual hospitals do not have explicit training in ethics. These people often appear not to regard this as a disadvantage, as they assume they have adequate moral experience as nurses and doctors. Yet critical voices might question whether professional Ethics Support Services should perhaps be managed by specially trained ethicists. In Switzerland there is not even agreement on a particular methodology of how best to do Clinical Ethics. But this is commonly not seen as a disadvantage either, as it accords with Switzerland’s culture of ascribing equal value to different approaches, and of not wanting to make inflexible national rules.

8.3

The Swiss Context – Europe but Not European Union

Switzerland is a confederation of 26 cantons, with federal authorities seated in the capital in Bern. It is a landlocked country bordered by Italy, France, Germany, Austria and Liechtenstein, and has a population of approximately 8.6 million (Swiss Federal Statistic Office 2020). Switzerland is geographically located in Europe, but it is – politically speaking – not part of the European Union. It is one of the most developed countries in the world, with the highest nominal wealth per adult (Credit Suisse 2019) and the second-highest per capita gross domestic product, ranked in 2019 (International Monetary Funds 2019). The towns of Zurich, Geneva and Basel have been ranked among the top ten cities in the world in terms of quality of life (Ari 2018). All Swiss residents are required to have health insurance, which they buy from private insurance companies; these companies in turn are required to accept every applicant. The cost of the healthcare system is among the highest in the world (Swissinfo 2020). The Swiss political system is built on the ideas of ‘direct democracy’ and ‘federalism’. Switzerland has four official languages: German, French, Italian and Romansh. Support for these languages and their statutory equality are an important expression of Swiss national culture and the equality of different regional cultures in Switzerland. It can be assumed that this unique Swiss context also influences the population’s behaviour and fundamental values. It is these values that are then important when they arise in ethical contexts in healthcare.

In Switzerland we use a different terminology. We do not speak of ‘Consultation’ anymore but of `Clinical Ethics’, ‘Ethics Support’ and/or ‘Clinical Ethics Support Services’. Compare also the explanations to these terms in the section of the text: National Recommendations for Clinical Ethics – from ‘Consulting’ to ‘Support’.

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‘Swiss’ Values – Responsibility, Self-Determination and Consensus

The political system of direct democracy can only be realised in the population at large if every individual has a certain level of political commitment. It requires both a degree of collective responsibility and also the idea of personal self-determination. Individual self-determination is highly regarded, and is prominent in most publications on ethics in the Swiss healthcare system, whether they emphasise patient autonomy or the autonomy of healthcare professionals. The classical model of clinical ethical decision-making is also strongly shaped by the idea of selfdetermination (e.g. Baumann-Hölzle and Meier-Allmendinger 2009). In Switzerland, people like to take time for decisions. ‘Time’ is therefore an important decision factor (e.g. Rehmann-Sutter and Mueller 2009). Thus, decisions are linguistically often referred to as ‘decision-making processes’ [in German language: ‘Entscheidungsfindungsprozess’]. In the development of Clinical Ethics itself, it was long assumed that decisions should always be made by consensus, i.e., a decision should be made with the agreement of every team member (SAMS 2003: 2265). The importance of consensus is probably also linked to the basic Swiss political principle of concordance. This principle is generally understood to be the unremitting pursuit of balance or compromise, both between political parties and the different language, social and political regions that make up Switzerland. In summary therefore, we can identify a sense of responsibility, self-determination, and the will to build consensus as important ‘Swiss’ values.

8.5

Development of Clinical Ethics Support in Switzerland – An Overview

The development of Clinical Ethics in Switzerland is connected to a national umbrella organisation for physicians, the Swiss Academy of Medical Sciences (SAMS). Although this is a physicians’ association, its focus is not on doctors alone, but on healthcare professionals in general. Founded in 1943 as a research funding institution, nowadays the SAMS mainly acts as a bridge between science and wider society. Today, its main programs concentrate on supporting quality and integrity in biomedical and clinical sciences, and on clarifying ethical questions in connection with medical developments in Switzerland.2 From this point of view the SAMS had an early interest in how and in what form Clinical Ethics services were established in Swiss hospitals. Specifically, the SAMS has conducted three surveys on this issue in Swiss hospitals over the last 20 years (published by the SAMS in 2003, 2008, 2016) and a fourth survey is currently in progress.3 Here, we present the most significant results of the first three studies in brief, focusing on (a) the

2 3

SAMS 2020. https://www.samw.ch/en.html. Accessed 15 August 2020. Contact person: Sibylle Ackermann, SAMW, cf. footnote two.

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prevalence of Clinical Ethics Services, (c) the key ethical topics in the different years, and (c) the structural challenges faced by the respective Clinical Ethics Services at each point.

8.5.1

Prevalence of Clinical Ethics Support Services

Over the years, it was found that the presence of identifiable Clinical Ethics Support Systems in Swiss hospitals had risen from only 20% (SAMS 2003: 2264) to 48% (SAMS 2016: 52). The current fourth survey shows that this value seems to have levelled off, because it is again found that about 50% of all hospitals have some sort of system in Clinical Ethics Support.4 It is important to understand that the establishment of these structures is voluntary: there are no state or regional statutory requirements for a hospital to have one. Still, over the last 10 years more and more professional ethicists have become established, particularly in the university hospitals. In smaller hospitals, it is usually dedicated doctors and nurses (without explicit ethics training and without explicit working hours in ethics) who are involved in the ‘Clinical Ethics Committees’ there.5

8.5.2

Key Topics of Clinical Ethics

Some areas of responsibility of Clinical Ethics Support services have changed a little over the last 20 years while others have not. Responses across the three completed surveys showed that ethics professionals in the various hospitals perceived ethical questions on ‘discontinuation of treatment’ as the most common topic in their work. The next most important topics were ‘resuscitation’, ‘coercive measures” and ‘assisted dying’.6 Lately, there is a new emphasis on ‘conflicts of values’ within clinical teams, as well as legal topics such as patients’ ‘decision- making capacity’.

8.5.3

Structural Challenges Over the Years

The first SAMS survey in 2003 brought up the issue of whether or to what extent the Clinical Ethics Services could or should make their own medical decisions. In 2016, half of the ethics professionals said they could themselves make decisions on patient 4

Oral information by S. Ackermann, 17 September 2020, cf. footnote three. Clinical Ethics Committees are usually organized bottom up by dedicated physicians and nurses and consist of 10–15 members. They deal with guidelines, further education in Ethics for the institution. Usually 2–3 of these members are also specialized in Ethics Consultation or in the moderation of ethical case discussions. However, it is not necessary to have a certificate or proof of further training to be able to work in these committees. 6 It is important to understand that physician-assisted-suicide is not illegal in Switzerland. 5

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cases. In its report on the 2016 survey, the SAMS argued strongly against this, saying Clinical Ethics Services were not competent to make medical decisions. They conceded that the professional ethicist is indeed able to develop a ‘recommendation for action’ together with the clinical team, but the final decision, e.g. to discontinue treatment, must always remain with the responsible physician, if only from a legal point of view (2016: 57). A second area of conflict arose from the viewpoint of the ethics professionals. It became clear from the 2008 and 2016 results that they viewed the existing Clinical Ethics Structures as inadequate, i.e. that they were too entangled in the hierarchies of individual hospitals or clinics, that they felt constrained and were often shown little respect. They argued for greater independence from clinical operations (2016: 57). Thirdly, it became clear, that most Clinical Ethics Committees did not require their members to undertake any ethics training at all. There is no uniform training program in Switzerland that qualifies people to work in Clinical Ethics Services. These results of the individual surveys contributed to the SAMS deciding to issue national recommendations on Clinical Ethics.

8.6

National Recommendations for Clinical Ethics – From ‘Consulting’ to ‘Support’

Conscious of the novelty of Clinical Ethics in 2009 the SAMS started to set up a national working party to clarify what it is that Clinical Ethics in Switzerland can and cannot do.7 This process resulted in guidelines published in 2012 which define the aims of Clinical Ethics very precisely (SAMS 2012: 7): Ethics support is designed to facilitate decision-making for individuals and institutions facing ethically difficult situations which involve value conflicts. It should also enhance the transparency of decision-making processes, promote the recognition of conflicting values or interests and indicate ways of resolving such conflicts. Any opinions offered are of a consultative nature: the legitimacy of ethics support is based solely on the arguments put forward. Responsibility for decision making rests with the physician and the care team, and the role to be assigned to patient autonomy remains unchanged. The idea is not to make ethics structures irreplaceable or to absolve care teams of their responsibility, but to offer systematic support for care teams and management in dealing with ethical problems and conflicts. This definition will probably also have helped many hospital management boards to decide whether to set up Clinical Ethics Services or not. It gets to the heart of the matter: there are conflicts of values and interests; and clinical ethicists work in a consultative fashion, i.e. they do not make decisions on their own. Transparency is important, as are arguments and justifications. And most importantly: the patient generally bears responsibility for all decisions affecting him or her. It should, however, be emphasised that Clinical Ethics is aimed primarily at healthcare 7

The first author of this text was part of this working group.

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professionals and not directly at patients. It is also clear that the SAMS recommendations are still very much dominated by ‘decisions’, from the very first sentence that mentions support in ‘decision making’. When the SAMS working party began its task, the assumption was that there would be a recommendation for ‘Ethics Consultancy’. Over the 3-to-4 year process, however, it moved increasingly closer to the concept of ‘Ethical Support’, until finally the recommendations were given the title ‘Ethics Support in Medicine’, reflecting a change in phrasing that the whole of Europe has experienced over the last 10 years. In relation to Clinical Ethics, the term ‘Consultancy’ is now rarely used, and has been replaced almost completely by ‘Ethics Support Services’. ‘Ethics Support’ may still include (retrospective or prospective) consultation in individual cases, but also covers support for institutional management, the development of general ethical guidelines, and contributions to undergraduate, postgraduate and continuing education in ethics, as well as research in ethics, and other activities. As much as these Guidelines have helped all Swiss ethicists to start from a shared language and shared concepts, there are still challenges for the future of Clinical Ethics in Switzerland.

8.7

Current Challenges – Professionalization, Innovation or Stagnation

There is no doubt that Clinical Ethics in Switzerland has gained practical relevance over the last few years. Yet one might still get the impression that the initial successes of Clinical Ethics have started to falter, or even come to a halt, and that our field requires a new surge of innovation in order to overcome this – as we perceive it – stagnation. The meaning and purpose of Clinical Ethics still seems unclear, and the theoretical concepts are little reflected upon or even reviewed.

8.7.1

The Meaning of ‘Clinical Ethics’ Is Still Unclear

Ethics (as a discipline) deals with the reflection on morality – this at least would be a textbook definition of ethics. In Normative Ethics, this reflection is combined with the aspiration to develop realistic and well-founded solutions for current problems and dilemmas. Clinical Ethics takes on this task as a kind of support function for healthcare professionals (and consequently also for patients). Using this definition here shows a clear commitment to defining your discipline first. Unfortunately, this commitment seems to be lacking in the debate, which tends to assume that everyone is referring to the same approach or definition of ethics, which is often not the case. Healthcare professionals, members of ethics committees and clinical ethicists often do appear to start from very different definitions of ethics, but rarely discuss their starting points in practice. From this situation it follows that the discipline of Clinical Ethics in Switzerland may be understood by some to be a ‘matter of the heart’, or an opportunity to ‘debrief’, often just a case of ‘it’s good to have been able to talk about

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it’. A hospital CEO might view ethics as ‘public relations’, a pastoral care worker as an expression of spirituality. So, this lack of definition and conception seems to prevent professionalization, and runs the risk of watering the discipline down.

8.7.2

Concepts Are Still Unclear

The theoretical backbone of Western Biomedical Ethics (and thus also of applied Clinical Ethics) is formed by the four principles of Beauchamp and Childress. We all know them, we all use them in daily clinical ethics life, and in teaching and training: respect for (patient) autonomy, beneficence, non-maleficence, and justice. The pioneering spirit of this ethical paradigm is uncontested, the focus on the patient’s wishes is fundamental, and has been so for more than 40 years (Beauchamp and Childress 2019). We should nevertheless be confident enough by now to include supplementary or alternative concepts in our ethical thinking: care ethics offers fascinating considerations of the relational dimensions of autonomy; virtue ethics brings moral courage and behaviour back to the centre. An openness to other ethical theories would have important epistemological implications. The current, often superficial, focus on the patient’s wishes can also lead to a dangerous delegation of responsibility (‘this is something the patient needs to decide for herself’). In addition, the focus on self-determination reinforces a trend towards individualization that plays into the hand of the market economy. And mostly, it does not represent the relational integration of the patient in her family and friendship relationships. These two points lead us to suspect that the discipline of Clinical Ethics is nowhere near the level of professionalization that it could be. The Swiss ethicists should have the confidence to reflect upon their daily activity as ethicists, in terms of epistemology and scientific theory. There should be an open discussion on starting points, principles, varieties of ethical approaches, as well as on practical application.

References Ari, Corinne. 2018. Switzerland Global Enterprise. https://www.s-ge.com/de/article/aktuell/20181ranking-mercer. Accessed 15 Aug 2020. Baumann-Hölzle, Ruth, and Diana Meier-Allmendinger. 2009. Der selbstbestimmte Patient. Basel: Schwabe. Beauchamp, Tom, and James Childress. 2019. Principles of Biomedical Ethics. Marking Its Fortieth Anniversary. The American Journal of Bioethics 19 (11): 9–12. Credit Suisse. 2019. Global Wealth Report. https://www.credit-suisse.com/about-us/en/reportsresearch/global-wealth-report.html. Accessed 15 Aug 2020. International Monetary Fonds. 2019. https://www.imf.org/external/pubs/ft/weo/2019/02/weodata. Accessed 15 Aug 2020. Rehmann-Sutter, Christoph, and Hansjakob Mueller. 2009. Disclosure Dilemmas. London: Ashgate.

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SAMS. 2003. Salathé, Michelle, Margrit Leuthold, Hermann Amstad, and Michel Valloton. Klinische Ethikkommissionen in der Schweiz – eine Bestandsaufnahme. Schweizerische Ärztezeitung 84 (43): 2264–2267. ———. 2008. Salathé, Michelle, Hermann Amstad, Marit Jünger, Margrit Leuthold, and Claude Regamey. Institutionalisierung der Ethikberatung an Akutspitälern, psychiatrischen Kliniken, Pflegeheimen und Einrichtungen der Rehabilitation der Schweiz: Zweite Umfrage der Schweizerischen Akademie der Medizinischen Wissenschaften. Bioethica Forum 1 (1): 8–14. ———. 2012. Ethics Support in Medicine. https://www.samw.ch/en/Publications/Medical-ethicalGuidelines.html. Accessed 15 Aug 2020. ———. 2016. Ackermann, Sibylle, Lukas Balsiger, and Michelle Salathé. Ethikstrukturen an Akutspitälern, Psychiatrischen Kliniken und Rehabilitationskliniken der Schweiz. Bioethica Forum 9 (2): 52–59. Swiss Federal Statistic Office. 2020. https://www.bfs.admin.ch/bfs/en/home/statistics/population/ effectif-change/population.html. Accessed 15 Aug 2020. Swissinfo. 2020. https://www.swissinfo.ch/ger/gesundheitspolitik_das-schweizergesundheitswesen-kurz-erklaert/44136626. Accessed 15 Aug 2020.

Part II

Introduction to Part II: Emerging and Thorny Clinical Ethical Issues

The essays in this part explore issues that are the basis of requests for ethics consultations in North America and Europe. The questions about which clinical ethicists are consulted are often driven by the seemingly intractable social issues of our era rather than new technologies. At issue in these essays are questions of obligations to patients who are members of socially marginalized and vulnerable populations. Marion Danis examines clinical ethical dilemmas involving patients whose socioeconomic or immigration status can lead to inequitable care. Kayhan Parsi discusses the challenges of patients who present difficult discharge scenarios in the US and Sally Bean and Julija Kelecevic tackle the issue of families refusing discharge for a patient from a Canadian perspective. Mark Kuczewski analyses the dilemmas of caring for persons with opioid use disorders and how clinical ethics consultants can help resolve them. Of course, as social marginalization is a product of particular societies, we include an essay by Ralf Jox that contrasts the European context in which patients are more likely to be undermedicated due to stereotypes concerning opioid abuse. Ethics consultants have also increasingly been asked to mediate conflict owing to expansive assertions of decision-making autonomy by the families of patients. Such assertions regarding end-of-life care have long been common and their status is discussed in Part III. Norms regarding the acceptability of a family refusal of basic care such as hygiene and pain control for patients are addressed by Sarah Vittone. Patricia Mayer tackles the thorny issues that arise when families try to micromanage patient care on multiple levels. Such problems are emerging more rapidly in the North American nations that place a greater emphasis on individualism. Thus, Canadian and US authors occupy this space. These emerging issues are thorny in the way that we emphasize throughout the volume. Namely, consultants are unlikely to find a once-and-for-all resolution to the questions raised with the result that they will become perennial matters on which ethicists are consulted. Readers can learn from the perspectives of our contributors and the practical guidance they offer for ethics consultants.

Chapter 9

Ethics Consultation and Marginalized Populations Marion Danis

Abstract Ethical questions or concerns arising in clinical practice occasionally involve marginalized individuals – individuals who are treated as insignificant, unimportant or powerless. Marginalized individuals or groups are often denied rights, opportunities and resources that are afforded to others. This chapter identifies who counts as marginalized populations, examines what is entailed in advocating for marginalized populations, and considers how such advocacy coheres with the responsibilities of clinical ethics consultants. During consultations, consultants can invite individuals who might have been ignored to consultation meetings; create an atmosphere of respect, inclusion and patience; help misunderstood patients to voice their concerns; insure that silent consultation participants have a chance to speak; and meet separately with individuals who are too intimidated to participate in group discussions. In the policy arena, ethics consultants can articulate to institutional leaders why they should include a strong commitment to marginalized patients and marginalized segments of the community in their mission, and serve on committees that make decisions about allocation of resources. They can help to address organizational issues such as structural racism and set the tone of the ethical climate so that it is an inclusive, respectful, and tolerant workplace. In the teaching arena, the ethics consultant can teach staff and trainees about the concept and consequences of marginalization and social exclusion. If advocacy at the institutional level is insufficient to address a problem of social exclusion, some ethics consultants will feel a sense of moral obligation that might justifiably lead them towards advocacy in the public arena. Keywords Ethics consultation · Clinical ethics · Marginalized populations · Advocacy · Respect · Inclusion

M. Danis (*) Department of Bioethics, National Institutes of Health Clinical Center, Bethesda, MD, USA e-mail: [email protected] © This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_9

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Objectives

1. Identify who counts as marginalized populations. 2. Examine what is entailed in advocating for marginalized populations. 3. Consider how such advocacy coheres with the responsibilities of clinical ethics consultants. Consider these two examples of requests for ethics consultation in which advocacy might be appropriate. In such cases, ethics consultants might use their skills to act on behalf of a person from a marginalized population to promote their rights, interests and opportunities for health and well-being.

9.2

Case 1

Ms. V is in the hospital for treatment of asthma and pneumonia. She is a 53 year old woman who came to the United States all alone 11 years ago when war broke out in her former homeland. She works as a housekeeper when she can find employment. She does not speak English well. She had been living with a family who have recently asked her to move out because they have had another child and no longer have room for her. Her pneumonia is improving and she is considered medically stable enough to go home. The social worker has found a shelter where she can go but Ms. V does not want to leave the hospital and asks to stay longer. Ms. V is among the many sorts of individuals who are marginalized who might come to the attention of a clinical ethics consultant. She is a female immigrant who has low socio-economic status, little knowledge of English, and social isolation. Her pneumonia has tipped her over in personally catastrophic circumstances – she is now homeless. The clinical team members may think they have come up with the only alternative. How might the clinical ethicist effectively advocate?

9.3

Case 2

Mr. R came to the emergency department of his local teaching hospital with acute urinary tract obstruction. He has a history of an enlarged prostate and kidney stones. He is extremely uncomfortable and has a fever. Dr. M, an African American female physician who is the urology resident on call comes to see Mr. R, introduces herself and begins to evaluate him. She talks with Mr. R, explains that he will need a urinary catheter, prepares for inserting one and seeks his consent. Mr. R refuses to let Dr. M proceed and asks for another doctor. The emergency staff are at an impasse since a urinary catheter is needed to avoid deterioration of renal function and sepsis from a urinary tract infection but the patient refuses to let the assigned clinician proceed. They suspect that Mr. R has a bias against African Americans.

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Introduction

Clinical ethics consultants should seek to facilitate the resolution of ethically complex situations in a manner that treats all those who are involved fairly. When a consultation involves individuals who are powerless or perceived by others as unimportant, insignificant or peripheral, an ethics consultant must consider how to advocate for these marginalized individuals while conducting the consultation effectively.

9.5

Marginalized Populations

To be marginalized is to be treated as insignificant or peripheral and to be relegated to an unimportant or powerless position within a society or group (“Marginalize” 2020). Social marginalization is synonymous with social exclusion which entails denial of rights, opportunities and resources that are afforded to various groups (Silver 1994). The term social exclusion is used in a number of social science disciplines and education (Peace 2001). The Charter for Compassion, an organization and worldwide movement begun in 2009 by Karen Armstrong that was developed to create and support compassionate communities, institutions, and networks, considers individuals who are underserved, disregarded, ostracized, harassed, persecuted, or sidelined as marginalized (“Charter” 2022). The organization considers people who are susceptible to such treatment to include: • • • • • • • • • • • • • •

Immigrants, Refugees, and Migrants Women and Girls Victims of Human Trafficking Mentally Ill Persons Children and Youth People of Differing Sexual Orientation (LGBT community) People of Differing Religions Developmentally Delayed, or Physically Disabled People Incarcerated People (and their Families) People Released from Incarceration People of Low Socioeconomic Status Unemployed People People of a Particular Ethnicity/Country of Origin People with a Differing Political Orientation

In the healthcare context, individuals who are susceptible to marginalization might include patients who cannot speak up for themselves, who do not speak the

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local language, who are uninsured, who are homeless, or who present themselves in a way that is alienating to others by their off-putting appearance or behavior. It also seems appropriate to consider healthcare workers who are not respected in the institutional hierarchy as marginalized.

9.6

Advocacy and Activism

Several bioethics scholars have considered how appropriate it is for academic bioethicists to take on an advocacy role (Scully 2019; Parker 2007). Some believe advocacy undermines the most cleared-eyed analysis (van der Vossen 2015; Benatar 2006) while others in the more activist schools of thought, particularly feminist, disability theory, and critical race theory scholars, endorse a more active stance and evaluate scholarship in light of its contribution to improving the status quo. The October 2019 special issue of Bioethics (2019) provided a relevant set of articles by bioethicists who participated in a symposium on the pursuit of activism. Participating authors tended to agree that the discipline of bioethics lends itself to activism (Dreger and Baylis 2018). As Scully (2019) writes “the normative conclusions of (bio)ethics are not just statements about what has been shown to be true or not. They are claims that certain acts or states are ethically desirable or objectionable (or at least that some are preferable to others). Ethical normativity is about making a moral commitment to how things should be, to one state of affairs rather than another, and to do this inevitably means taking a small but crucial step away from an ideal of non-partisanship. Being required to take a normative stance at all means that there cannot be a hard line between scholarly bioethics and being an advocate/activist in the same way as in other areas of academia. A continuum runs from the traditional goal of ‘pure’ scholarship at one end, to torching the barricades at the other.”

The moral tension is likely to be even more pressing for clinical ethics consultants than it is for academic bioethics scholars insofar as the work of the clinical ethicist has immediate and concrete consequences: to what extent should they advocate for marginalized individuals and populations with whom they engage in the course of their consultative practices? Generally, ethics consultants are taught to create a moral space in which to deliberate about the right choice or the right course of action (Urban Walker 1993). All stakeholders in an ethically charged decision are invited by an ethics consultant to partake and have a voice in resolving the tensions and in finding the ethically acceptable range of options from which to choose. Yet, when marginalized individuals are stakeholders in a situation that led to a consultation request, the ethics consultant must consider whether merely facilitating the deliberation in an even- handed manner insures that a marginalized party is treated fairly or whether advocating for them is warranted.

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Advocating for Marginalized Populations

Advocating for marginalized individuals and populations involves being aware and knowledgeable about the impact of marginalization on health and wellbeing and being informed about mitigating strategies. This information is useful in making moral arguments about what is owed to marginalized populations to parties involved in an ethics consultation including a healthcare facility’s medical and administrative leadership. Individuals and groups who are marginalized and socially excluded are both disrespected and materially disadvantaged. While the reasons for marginalization may differ, marginalized groups are generally at high risk of being socioeconomically disadvantaged and thus in need of interventions that mitigate the adverse consequences of poverty, limited educational opportunities, unemployment or underemployment, and unsafe neighborhoods (Wilkinson and Marmot 2003). The pervasive experience of marginalization requires a thoroughgoing response by those who wish to intervene and break the cycle of attendant disadvantage. Those working in public health and healthcare organizations increasingly recognize that medical care is necessary but not sufficient for reducing the health disparities experienced by marginalized populations (Marmot et al. 2008). The circumstances of marginalized individuals can be improved through more or less “upstream” efforts. Upstream efforts to improve the welfare of marginalized individuals and populations entail enhancing access to the social determinants of health, i.e., the conditions that underpin their health prospects. More downstream efforts entail mitigating the impact of deprivation.

9.8

Goals of Clinical Ethics Consultation

If marginalized individuals and groups are so profoundly affected, where do ethics consultants fit into offering any useful modifying or mitigating efforts? Since the late 1990s when John Fletcher and Mark Siegler published a consensus statement, the goals of ethics consultation have been generally viewed as the improvement of the quality of healthcare through the identification, analysis and resolution of ethical questions by identifying and analyzing the nature of the value uncertainty or conflict that underlies the consultation and facilitating resolution of conflicts in a respectful atmosphere with attention to the interests, rights, and responsibilities of all those involved (Fletcher and Siegler 1996). It follows that when ethics consultants are consulting with someone who may be marginalized (or conducting a consultation in which a marginalized individual has any stake), the consultant should assure that interactions are respectful, despite or in contrast to the way marginalized individuals might usually be treated by others around them. Consultants will need to take into account a broad understanding of

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who might be marginalized and apply the understanding of marginalization outlined earlier. Ethics consultants ought to consider how the interests and rights of marginalized individuals can be promoted. To act in a person’s interest implies to act so as to benefit them. This approach might involve, to begin with, giving marginalized individuals or groups the opportunity to voice their own interests and what their experience of marginalization entails. It will require a broader understanding about the determinants of health and well-being than initially appreciated when the goals of the practice of clinical ethics consultation (CEC) were first articulated. While founders of the field of CEC initially conceived of the clinical ethicist’s role in the healthcare context, contemporary clinical ethicists should be aware that subsequent research has shown that healthcare contributes only partially to health and that income, housing, education, neighborhood, and nutrition play a substantial role. It is therefore reasonable to argue that when ethics consultants aim to address ethical questions that affect health, they ought to focus with a broader lens than initially articulated in 1996. Ethics consultants should be aware that healthcare organizations that are at the forefront of efforts to address the social determinants of health offer interventions that go beyond the boundaries of the traditional healthcare sector (Brown 2019). Ethics consultants who have a variety of activities they engage in including consultation, teaching, and policy work, can pursue a number of options for advocating on behalf of marginalized individuals or groups (Danis et al. 2016). In the policy arena, the ethics consultant can articulate to institutional leaders why they should include a strong commitment to marginalized patients and marginalized segments of the community in their institutional mission. The ethics consultant can serve on institutional committees that make decisions about allocation of resources and make the case for prioritizing marginalized patients and groups. They can help to address organizational issues such as structural racism. They can help to set the tone of the ethical climate in their institution so that it is an inclusive, respectful, and tolerant workplace. They can encourage community outreach. If advocacy at the institutional level is insufficient to address a problem of social exclusion, some ethics consultants will feel a sense of moral obligation that might lead them towards involvement with a public body or campaigning group (Lindeman 2019; Scully 2019). In the teaching arena, the ethics consultant can teach staff and trainees about the concept and consequences of marginalization and social exclusion in their various teaching encounters (e.g., classroom teaching, invited lectures, journal clubs, and case presentations). During CECs, consultants can take a number of steps: inviting individuals who might have been ignored or forgotten to consultation meetings; creating an atmosphere of respect, inclusion and patience when arranging and holding consultation; and insuring that consultation participants who are silent have a chance to speak. It may be necessary to meet separately with individuals who are too intimidated to voice their concerns during group discussion of a case. Advocating for a marginalized participant in a consultation may or may not entail endorsing or agreeing with the point of view of that participant, depending upon how the ethics consultant

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believes competing needs and perspectives can be most fairly balanced, mediated or negotiated. When clinicians request consultations in regard to ‘difficult’ patients or ‘non-compliant’ patients, some of whom are marginalized individuals who are misunderstood by the clinical team, the ethics consultant can help such individuals voice their concerns more effectively to be better understood. Some marginalized individuals who have ethical concerns may be reluctant to call a consultation. The ethics consult team should recognize that this may be the case and be sure to promote awareness of the existence of the ethics consult service, make the service easily accessible, and make confidential consultation available for individuals who might be afraid of retribution. Ethics consultants might also recognize that marginalized individuals may be helped to speak more effectively for themselves. They can be informed of their rights and other possible opportunities for meeting their needs and given information about other resources. In some ways, this ideal does aim at achieving a facilitated consensus just as clinical ethicists often do. But the ethics consultant must go much further than usual to create the conditions for a genuine consensus since the patient may be unable to represent and realize their interests in the dialogue. For instance, in our first case, the ethicist should not immediately assume that the plan to send Ms. V. to a shelter for homeless persons is the only possibility. So, additional efforts are in order. Some possibilities include helping the clinical team appreciate how dire the situation is for Ms. V, listening to Ms. V, helping her to voice her concerns, having further conversation with the social worker and Ms. V to strategize and find other solutions – finding another household where she might live, connecting her to other community resources such as English as a second language classes, employment agencies and support groups, and perhaps advocating for an extra few days for Ms. V’s adjustment to homelessness while she is recovering from pneumonia. At a policy level, the ethics consultant might advocate for systematic efforts that could be offered by the organization for similar patients in the community. In the second case, it would be all too easy to assume Mr. R is racist and not adequately construct the case narrative, i.e., verify the facts of the case prior to deliberation. An ethics consultation may begin to help by exploring with Mr. R why he refuses. Is he embarrassed to have an unfamiliar female take care of his urologic needs, is he worried that she is inexperienced, or is he prejudiced against African Americans? Depending upon the nature of his concern, the resolution may vary. But regardless of the reason, and regardless of whether the resolution involves having Dr. M remain involved in Mr. R’s care (Paul-Emile et al. 2016), the ethics consultant should make certain that Dr. M receives an unambiguous message of support from institutional leadership and indicate to the patient that it does not allow discrimination against physicians based on race, gender, religion or other personal characteristics.

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Feasibility and Cautions

The likelihood that an ethics consultant will be successful in taking an advocacy position and the associated costs of doing so, may depend upon factors related to the consultant’s career stage and standing (Shakespeare 2019). Moorlock argues that success is more likely for those who are more senior and have established their reputation and credibility. Moreover, he suggests that engaging in activism at an early career stage may actually hinder the development of credibility, thereby preventing effective activism later in one’s career (Moorlock 2019). Although activism often arises from an immediate need to respond to injustice, Moorlock’s arguments suggest that the responsibility for pursuing such activism falls on those who are better positioned to achieve the desired end, and that this will often be senior staff. Yet Lindeman argues that there is room for both those who take more and less active advocacy roles (Lindeman 2019). When clinical ethicists pursue advocacy, they should be cognizant of pitfalls. Rogers warns: “loss of objectivity, bias and blunted academic rigour can arise irrespective of any commitment to activism (Rogers 2019).” Clinical ethicists can and should be advocates for persons who are marginalized. And ethicists must be sure to honor their obligations to truth as they pursue this obligation to social justice. Acknowledgments The preparation of this chapter was supported by the Department of Bioethics which is part of the intramural program of the National Institutes of Health. Disclaimer The views here are those of the author and not necessarily a reflection of the policies of the NIH or the US Department of Health and Human Services.

References Benatar, D. 2006. Bioethics and Health and Human Rights. Journal of Medical Ethics 32: 17–20. Bioethics. 2019. Special Issue: Bioethics and Activism. 33 (8): 851–978. Brown M. Social Health Network to Address Needs on a Broad Scale. May 6, 2019. Last accessed on December 23, 2019 at https://about.kaiserpermanente.org/community-health/news/socialservice-network-to-address-social-determinants-of-health. Charter for Compassion. https://charterforcompassion.org/about1. Accessed 16 February 2022. Danis, M., Y. Wilson, and A. White. 2016. Bioethicists Can and Should Contribute to Addressing Racism. American Journal of Bioethics 16 (4): 3–12. Dreger, A., and F. Baylis. 2018. More Than Words. In Bioethics in Action, ed. F. Baylis and A. Dreger, 1–8. Cambridge, UK: Cambridge University Press. Fletcher, J.C., and M. Siegler. 1996. What Are the Goals of Ethics Consultants? A Consensus Statement. Journal of Clinical Ethics 7 (2): 13–25. Lindeman, H. 2019. Bioethicists to the Barricades! Bioethics 33: 857–860. “Marginalize”. The Dictionary. Merriam-Webster Inc. https://www.merriam-webster.com/dictio nary/marginalize. Accessed 6 January 2020. Marmot, M., S. Friel, R. Bell, T.A.J. Houweling, and S. Taylor. 2008. Commission on Social Determinants of Health. Closing the Gap in a Generation: Health Equity Through Action on the Social Determinants of Health. Lancet 372 (9650): 1661–1669. https://doi.org/10.1016/S01406736(08)61690-6.

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Moorlock, G. 2019. Do Junior Academic Bioethicists Have an Obligation to Be Activists? Bioethics 33: 922–930. Parker, L.S. 2007 Bioethics as Activism. In The Ethics of Bioethics: Mapping the Moral Landscape, ed. L.A. Eckenwiler and F. G. Cohn, vol 2007, 144–157. Baltimore, MD: Johns Hopkins University Press. Paul-Emile, K.N., A.K. Smith, B. Lo, and A. Fernandez. 2016. Dealing with Racist Patients. New England Journal of Medicine 374: 708–711. Peace, R. 2001. Social Exclusion: A Concenpt in Need of Definition? Social Policy Journal of New Zealand 16: 17–36. Rogers, W. 2019. Bioethics and Activism: A Natural Fit? Bioethics 33 (8): 881–889. Scully, J.L. 2019. The Responsibilities of the Engaged Bioethicist: Scholar, Advocate, Activist. Bioethics 33: 872–880. Shakespeare, T. 2019. When the Political Becomes Personal: Reflecting on Disability Ethics. Bioethics 33: 914–921. Silver, H. 1994. Social Exclusion and Social Solidarity: Three Paradigms. International Labor Review 133 (5–6): 531–578. Urban Walker, M. 1993. Keeping Moral Space Open: New Images of Ethics Consulting. Hastings Center Report 2: 33–40. van der Vossen, B. 2015. In Defense of the Ivory Tower: Why Philosophers Should Stay Out of Politics. Philosophical Psychology 28 (1045–1063): 1050. Wilkinson, R., and M. Marmot. 2003. Social Determinants of Health: The Solid Facts. 2nd ed. Copenhagen, Denmark: World Health Organization.

Chapter 10

Vulnerable Populations, the Inverse Care Law, and the Role of Clinical Ethicists: Experiences from Switzerland Tanja Krones and Settimio Monteverde

Abstract Departing from the Swiss healthcare context and from the experience of the clinical ethics unit at a larger university hospital, this chapter discusses what “witnessing” structural vulnerability of patients actually entails for clinical ethics services from a normative point of view. It discusses the foundations and duties of clinical ethics services in addressing unmet needs of vulnerable populations and epistemic injustices, recalling the relevance of assuring universal health coverage under applicable law and uncovering the dynamics of the so-called inverse care law as three necessary conditions for realizing health equity within the clinical context. An anonymized case is presented which is particularly revelatory for situations of “aggravated” vulnerability in the hospital context. The chapter concludes with organizational ethics strategies. The authors describe how structural vulnerability can be identified and addressed within clinical ethics. In order to realize prima facie relevant ethical principles, clinical ethics consultations (CECs) have to offer open spaces that allow parties to talk transparently about ethical problems and barriers arising from dynamics of “inverting” care. Keywords Universal health coverage · Advocacy · Structural vulnerability · Epistemic injustice · Inverse care law · Clinical ethics

T. Krones Institute of Biomedical Ethics and History of Medicine, University of Zurich, Zurich, Switzerland S. Monteverde (*) Institute of Biomedical Ethics and History of Medicine, University of Zurich, Zurich, Switzerland School of Health Professions, Bern University of Applied Sciences, Bern, Switzerland e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_10

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Objectives

1. Connect the concepts of vulnerability and universal health coverage and to describe their relevance for clinical ethics. 2. Explain from an ethical point of view the impact of inverse care law on patient outcomes. 3. Explore the role of clinical ethicists consultants as witnesses and advocates for realized justice in the readers’ own contexts. 4. Examine implications of this role at a personal, professional, institutional and political level.

10.2

Case: Dr. Hope and the Patient on the “Blacklist”

A clinical ethicist is called by Dr. Hope, a physician specialist in the infection diseases unit. She was informed by the administrative financial staff of the hospital that her patient, a 39 years old artist with HIV infection, who has a regular appointment at the HIV policlinic, has not paid his insurance fee. As the patient lives in a canton (a territorial subdivision of the country) that has adopted the possibility to “blacklist” citizens who have not paid the insurance fee based on a paragraph of the Swiss health insurance law amended in 2012, she is asked by the administration to decide if the appointment is “urgent”. She is informed by e-mail that treatment is “at the physician’s own risk”, since the insurance of the canton may not reimburse more than emergency care. In the previous consultation, the patient showed some signs of a mild depressive episode, due to his girlfriend leaving him. His virus load was higher compared to previous check-ups during the last few years which he did not follow regularly. As a consequence, the hospital issued an invoice for two missed appointments which the patient did not pay. When opening the patient chart, an entry in bold red letters saying that the patient has pending payments immediately catches the eye of the physician. Dr Hope asks the clinical ethicist to support her regarding the questions: Is HIV virus load testing an emergency? What happens if “more than emergency care is delivered?” How can the patient best be treated under this condition?

10.3

The Swiss Context: Opportunities and Vulnerabilities

Switzerland, in the middle of Europe but not a part of the European Union, is one of the wealthiest nations in the world and among the countries with the highest average life expectancy (Federal Office of Statistics 2020). The social security net claims to serve all citizens in need. Based on the Swiss Constitution every resident in the country is granted access to healthcare, health insurance is obligatory, and insurance companies must include every person who applies for basic insurance. The majority

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of the Swiss population is very satisfied with the quality of healthcare services and report only short waits for accessing general, specialist, and nursing care (Schoen et al. 2010). In parallel, both public spending on health (in terms of shares of gross domestic product) and out-of-pocket expenditures per capita represent a considerable financial burden which is particularly pronounced for disadvantaged populations and leads to increased gradients in affording and accessing health services (Federal Office of Statistics 2019). A whole string of phenomena results such as waiver of essential medical care (Bodenmann et al. 2018; Wolff et al. 2011), and under-, over- or misuse of medical services due to incentives or pressures generated by the reimbursement system (Faessler et al. 2015). Therefore, although one would not expect that meeting healthcare needs of vulnerable populations is a major issue within clinical ethics in Switzerland, the contrary is the case (Krones 2016). In Switzerland, as elsewhere, clinical ethics consultants have pointed at the known array of geo- and sociopolitical, economical and personal determinants of health (Faessler et al. 2015; Hurst et al. 2008). The services clinical ethics offers are placed at the interface between these determinants, the medical condition of the patient, the family, the healthcare team, the clinical setting and societal framework conditions. In a climate of austerity – observable also in other developed countries as an answer to the cost growth in the healthcare sector – the outcomes for those already worse off get even worse and follow the so-called inverse care law (Tudor 1971; Rawls 1985). Here, clinical ethics consultants often act as witnesses of how already known determinants of health are further exacerbated by the tacit enforcement of a market logic within the healthcare system. As a result, preexisting vulnerabilities of patients are aggravated (e.g., related to residential, economic, wealth or health status) within a system that – from the very idea – is supposed to rest on the foundations of constitutionality, solidarity, responsibility, and subsidiarity (Schoen et al. 2010). As the authors’ analysis of the last three years of documented ethics consultations within a major university hospital in Switzerland reveals (with more than 1000 consultations per year in average), vulnerability as the leading issue for ethics consultation – operationally defined as situations involving patients with un(der)recognized needs which could negatively impact the health outcome – was identified as the third most frequent reason for an ethics consult in this hospital (after advance care planning/patient autonomy and redirection of care issues).

10.4

The Idea of Universal Health Coverage as a Positive Right to Serve the “Worst Off” and the Dynamic of the Inverse Care Law

The concept of the Universal Health Coverage as a concrete implementation of the right to health, was formulated for the first time in 2005. The WHO Member States, (including Switzerland) thereby committed themselves to expand their health

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financing systems so that all people have access to health services and are not in danger of medical poverty (World Health Organization 2010). This objective defines Universal Health Coverage (UHC) and serves as the operationalization of Article 12 of the Declaration of Economic, Social and Cultural Rights of the United Nations (including the decisive Comment No 14 on the enjoyment of the highest attainable standard of health and healthcare (United Nations 2000) and the World Medical Association Declaration of Geneva (World Medical Association 2018). It is important to underline that the claim for a right to health is not considered as a mere right to access for minimal emergency care, but also to primary care, which substantially aligns with the principle of equality of opportunity. Second, it is important to understand that due to the complexity of societal systems, efficiency gaps, barriers, over-, under- and misuse of resources, no country in the world has reached and will perfectly reach that goal. This imperfect state is also true for Switzerland (Krones 2016). However, there is an ongoing aspiration to strive towards this goal and to come as close as possible. The philosophical basis for these claims stem from some of the central ideas of John Rawls’ “Justice as Fairness” perspective (Rawls 1985) and the capability approach of Amartya Sen (2009) and Martha Nussbaum (2007) and were amended by the recognition of the problem of opportunity cost and therefore utilitarian examinations of the cost of measures. Almost fifty years ago, the UK general practitioner James Tudor Hart published the famous concept of the inverse care law, describing how “The availability of good medical care tends to vary inversely with the need for it in the population served. This inverse care law operates more completely where medical care is most exposed to market forces, and less so where such exposure is reduced” (Tudor 1971, p. 405). This law has been proven to be true in many circumstances and health systems, e.g. by the correlation of measures of inequity (GINI-coefficient), regardless of the overall wealth of a population to its health (Ward and Viner 2017).

10.5

Clinical Ethicists as Witnesses of Epistemic Injustice and the Advocacy Role

Around the world, clinical ethics has become a discipline with a considerable academic backbone and practical impact, accompanied by discussions on theoretical underpinnings, structures, methods and evaluation, as well as competencies, skills and roles of its professional representatives. One role that, in our view, is of utmost importance when it comes to questions of serving the needs of marginalized populations and assessing structural vulnerability is the advocacy role of clinical ethicists: It is not sufficient only to “recall” the importance of human rights, i.e., the ethicist’s “witness” role, but the ethicist must also foster their realization in the clinical contexts where they emerge. Specifically, the ethicist must contribute to securing the enactment of those provisions ensuring universal health coverage. Of course, this is not an easy task in a never paradisiac environment, where universally

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existing, inescapable austerity and some political and profit-maximizing forces challenge the notion and goal of a “just” healthcare system that tries to fight the dynamics of the inverse care law to address the needs of marginalized populations and their structural vulnerability. Clinical ethicists are neither heroes nor angels nor can they be obliged to live up to supererogatory duties. Yet, as clinical ethics is not (only) applied philosophy reflecting on no-win ethical dilemmas, but “deals with real world problems and practices” (Fletcher and Boyle 1997, p. 1), clinical ethics consultants have special duties to do ethics. One genuinely professional and non-delegable task is to identify and address ethical problems, serve the needs of vulnerable populations and contribute to a just healthcare system within their realm of responsibility, be it on an individual patient or organizational local, regional, societal or even global level. Who else could explicitly have this task based on her/his area of expertise and responsibility? In order to further describe this advocacy role as a genuine expression of the professional role of clinical ethicists, we shall return to the case presented at the opening of this paper and offer a general analysis. This will be followed by an account of organizational ethics and its links to regional and national policy levels.

10.6

The Personal Is Political: Why Individual Approaches Are Necessary But Not Sufficient to Deal with Vulnerability in Clinical Ethics

Although Switzerland has adopted and claims to fulfill the Universal Health Coverage standards, the reader can deduce from the case (made up of three real individual Swiss cases in three Swiss healthcare institutions), that significant gaps exist. These gaps contribute to the vulnerability of the patient and can be – and de facto are – life threatening: In 2018, the TV daily news reported the second case of a Swiss patient not receiving his HIV medications because he was on the “blacklists” and died due to developing the full AIDS disease (Swiss Radio and Television 2018). This case is however only the tip of the iceberg, as more than one hundred thousand patients are currently not paying their health insurance and are at risk of waiver, underuse of medical services or undertreatment of medical conditions, similarly to undocumented migrants living clandestinely in Switzerland or Swiss citizens with unclear insurance status living abroad and repatriating for medical treatment. But also for those insured, Switzerland has a very high out of pocket payment rate for health services in general, and some areas of treatment and care are not or not fully covered by the insurance system, such as dental care but also palliative care or long term care for persons with disabilities, leading to Switzerland ranking at place 18 in the world in terms of palliative care affordability (The Economist Intelligence Unit 2015). In individual cases that emerge in the context of ethics consultations (such as the case above), the task of clinical ethics is primarily to strengthen the care team in their attitude and readiness to provide excellent primary care for this patient. Of equal

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importance is to build a robust network of competent persons around the particular patient that mitigates the potential consequences of the patient’s structural vulnerability, e.g., by including expert social workers and financial administrators and others in the ethics consultation (after having reached the agreement that this is primarily not an “ethical dilemma” but an “ethical problem” challenging the principles of non-maleficence and justice). Another major task of clinical ethicists consists in the sensitization through ethics education for the – often unconscious – structural biases that nurture epistemic injustice and lead to undertreatment of marginalized patients (Drewniak et al. 2016).

10.7

Assessing and Addressing Vulnerability in the Clinical Setting

Under the auspices of the Swiss Federal Office of Health, the platform “Swiss Hospital for Equity” was created (https://www.hospitals4equity.ch) with the intention to gather hospitals and other institutions in creating and strengthening healthcare practices and policies aiming at promoting health equity in the light of increasingly diverse patient populations in Switzerland with specific healthcare needs, e.g. due to language, culture, religion, sexual orientation, financial status, age, disabilities or preexisting diseases. The clinical ethics unit of the authors’ institution was charged with the assessment of how the phenomenon of patient vulnerability was perceived in the hospital. Based on the “Hub and Spokes model” adopted by the hospital in setting up the clinical ethics structures (MacRae et al. 2005), the group of ethics resource leaders of the clinics were invited to participate in a survey exploring the perception of vulnerability in the clinical context. Six clusters of patient characteristics could be identified which were translated into six categories of “rights” forming part of the hospital’s commitment and “ethical performance promise” as part of the membership to the network (Fig. 10.1). In CECs and ethics courses, this “rights charter” addressing vulnerabilities and aimed at mitigating its deleterious effects on health outcomes is increasingly used – as a checklist or a magnifying glass helping to timely identify unconscious biases and preventing epistemic injustice. As witnesses of epistemic injustice, clinical ethicists have the potential, the unique opportunity and (therefore) the moral duty to act as advocates for developing ethical best practices that secure the realization of health equity for people living in the same country, but have only a limited share in the prosperity of a society, supporting the healthcare team to recognize the specific needs generating vulnerability in healthcare and making beneficial healthcare outcomes accessible for all.

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Fig. 10.1 Dimensions of vulnerability and derived rights. (Source: authors)

References Bodenmann, Patrick, Hans Wolff, Thomas Bischoff, et al. 2018. Renoncement aux soins: dépistage et prise de charge. In Vulnérabilités, Équité et Santé, ed. Patrick Bodenmann, Yves Jackson, and Hans Wolff, 361–371. Chêne-Bourg: RMS Editions. Drewniak, D., T. Krones, C. Sauer, et al. 2016. The Influence of Patients’ Immigration Background and Residence Permit Status on Treatment Decisions in Health Care. Results of a Factorial Survey Among General Practitioners in Switzerland. Social Science & Medicine 161: 64–73. https://doi.org/10.1016/j.socscimed.2016.05.03. Faessler, M., V. Wild, C. Clarinval, et al. 2015. Impact of the DRG-Based Reimbursement System on Patient Care and Professional Practise: Perspectives of Swiss Hospital Physicians. Swiss Medical Weekly. https://doi.org/10.4414/smw.2015.14080. Federal Office of Statistics. 2019. Health Pocket Statistics 2019. https://www.swissstats.bfs. admin.ch/collection/ch.admin.bfs.swissstat.en.issue201415431900/article/issue201415431 900-01. Accessed 16 Jan 2021. ———. 2020. Life Expectancy in Switzerland. https://www.bfs.admin.ch/bfs/de/home/statistiken/ bevoelkerung/geburten- todesfaelle/lebenserwartung.html. Accessed 16 Jan 2021. Fletcher, John, and Robert Boyle, eds. 1997. Introduction to Clinical Ethics. 2nd ed. Hagerstown: University Publishing Group. Hurst, S.A., S. Reiter-Theil, A. Slowther, et al. 2008. Should Ethics Consultants Help Clinicians Face Scarcity in Their Practice? Journal of Medical Ethics 34: 241–246. https://doi.org/10. 1136/jme.2006.019828. Krones, Tanja. 2016. Universal Health Coverage. Health Care Deficiencies and Goals for Germany and Switzerland. In Global Ethics and Universal Health Coverage. Human Rights in Practice, ed. Lutz Bergemann, Andreas Reis, and Andreas Frewer, 75–84. Würzburg: Königshausen & Neumann. MacRae, S., P. Chidwick, S. Berry, et al. 2005. Clinical Bioethics Integration, Sustainability, and Accountability: The Hub and Spokes Strategy. Journal of Medical Ethics 31: 256–261. https:// doi.org/10.1136/jme.2003.007641. Nussbaum, Martha. 2007. Frontiers of Justice. Cambridge MA: Harvard University Press.

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Rawls, John. 1985. Justice as Fairness: Political Not Metaphysical. Philosophy and Public Affairs 14: 223–251. Schoen, C., R. Osborn, D. Squires, et al. 2010. How Health Insurance Design Affects Access to Care and Costs, by Income, in Eleven Countries. Health Affairs (Millwood) 29 (12): 2323–2334. https://doi.org/10.1377/hlthaff.2010.08621e. Sen, Amartya. 2009. The Idea of Justice. Cambridge MA: Harvard University Press. Swiss Radio and Television 2018. 10vor 10; 30.04.2018. Summary online https://www.srf.ch/ news/schweiz/nach-tod-von-hiv-patient-debatte-ueber-schwarze-listen-entbrannt. Accessed 16 Jan 2021. The Economist Intelligence Unit. 2015. Quality of Death Index. Online. https://eiuperspectives. economist.com/healthcare/2015-quality-death-index. Accessed 16 Jan 2020. Tudor, H.J. 1971. The Inverse Care Law. Lancet 297: 405–412. https://doi.org/10.1016/S01406736(71)92410-X. United Nations. 2000. General Comment No 14 “The Right to the Highest Attainable Standard of Health (art.12)”. E/C.12/2000/4. https://www.refworld.org/pdfid/4538838d0.pdf. Accessed 16 Jan 2021. Ward, J.L., and R.M. Viner. 2017. The Impact of Income Inequality and National Wealth on Child and Adolescent Mortality in Low and Middle-Income Countries. BMC Public Health 17: 429. https://doi.org/10.1186/s12889-017-4310-z. Wolff, H., J.-M. Gaspoz, and I. Guessous. 2011. Health Care Renunciation for Economic Reasons in Switzerland. Swiss Medical Weekly. https://doi.org/10.4414/smw.2011.13165. World Health Organization. 2010. World Health Report. Health Systems Financing. The Path to Universal Coverage. https://www.who.int/whr/2010/en. Accessed 16 Jan 2021. World Medical Association. 2018. Declaration of Geneva. The Physician’s Pledge. https://www. wma.net/policies-post/wma-declaration-of-geneva. Accessed 17 Jan 2021.

Chapter 11

Clinical Ethics Consultations Regarding Patients with Opioid Use Disorders Mark G. Kuczewski

Abstract Patients with Opioid Use Disorder (OUD) can pose particular challenges for physicians and the healthcare team. Guided by a typical case, this chapter considers the role that ethics consultants can play when called upon. Because OUD carries a significant social stigma, different models of addiction will be examined. Promoting understanding of the limited role that personal responsibility plays in addiction can facilitate more appropriate attitudes among the healthcare team. The author also concludes that the ethics consultant will likely need to make recommendations that are similar to other situations involving patients who are non-adherent to treatment recommendations. Physicians can best promote the patient’s well-being by partnering with the patient to develop a long-term treatment plan that either focuses on harm reduction or fosters abstinence. Keywords Abstinence · Addiction · Harm reduction · Medical ethics · Nonadherent patients · Noncompliant patients · Opioid use disorder · Resource allocation · Substance use disorder

11.1

Objectives

1. To describe models of addiction and their relationship to responsibility or culpability. 2. To analyze common clinical ethical challenges related to the treatment of persons with OUDs. 3. To examine common approaches, e.g., harm reduction versus abstinence only, to treatment of persons with OUDs.

M. G. Kuczewski (*) Neiswanger Institute for Bioethics & Health Policy, Loyola University Chicago Stritch School of Medicine, Maywood, IL, USA e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_11

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Case

A 30 year old male, Mr. V, is admitted for severe pain on his left side and a fever. The patient’s record indicates that he has been treated for endocarditis at this hospital twice before. On interview, he indicates that he has a substance use disorder and has recently relapsed in his use of opioids. The attending physician wishes to think through several issues with the help of a multidisciplinary team including an ethics consultant. First, there are several ways that antibiotics may be administered for the infection. Oral antibiotics are the safest route but may be less effective than other routes. Intravenous (IV) administration including the placement of a peripherally inserted central catheter (PICC) could potentially provide more effective administration. However, the PICC comes with the risk of misuse by the patient who might selfadminister opioids through the line. Administration of opioids through the line increases the risk of overdose. The second concern regards safe discharge. If the patient’s only medical need is several weeks of antibiotic therapy, where should the patient be during that time? Patients usually do not remain in an acute-care hospital for weeks solely for antibiotic administration. Yet, sending him home, especially with IV administration of medication, could pose dangers given his substance use disorder. Finally, it is possible that this patient’s infections will eventually require more aggressive treatment such as the surgical replacement of an infected mitral valve. Is such aggressive intervention and use of resources justified for someone with substance use disorder who may continue to use opioids and require repeat interventions? (Adapted from Kuczewski et al. 2018, pp. 32–33)

11.2.1 Ethical Framework: Choice and Moral Responsibility in Substance Use Disorders The United States is in the midst of an ongoing epidemic of opioid use. Tens of thousands of persons per year have died from opioid overdoses in the United States for the more than a decade (National Institute on Drug Abuse 2020a). This is a crisis that began with the overprescribing of pain medications by the medical profession under the zealous promotion of pharmaceutical companies leading to widespread dependence and addiction. Many of these patients have died as a result of buying and self-administering heroin and synthetic opioids, such as fentanyl, in an effort to address the needs of their OUD (National Institute on Drug Abuse 2020b). Because of the epidemic nature of opioid use in the United States, cases similar to Mr. V’s are well-known to clinicians in hospitals all across the country.

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A clinical ethics consultation (CEC) is sometimes requested in such cases. Clinicians sometimes have an intuition that perhaps they are doing something wrong by using significant resources for a patient who may be willfully “wasting” the resources. After all, the patient is contributing to the onset of the infection through behavior in which he engages. The patient seems to be choosing to be sick. If he is choosing illness, does he not thereby forfeit the right to medical resources to address that sickness? Clinicians seek a good outcome from treatment, such as replacing the mitral valve, and usually expect the valve to function well for years to come. It seems odd and perhaps uncomfortable to do such an intervention if one knows the patient will choose to continue with the same behaviors that will cause him to need another replacement in the foreseeable future. The patient is choosing a poor outcome. The attitudes of healthcare providers toward patients with substance use disorders stem to a degree from the issue of perceived choice and what the patient wants. Some providers may believe that the patient chooses the substance use over being healthy. However, choice is seldom so simple a phenomenon, especially in the context of addiction. Exploring the issue of choice can help the healthcare team to embrace more supportive attitudes toward the patient. In the case of substance use disorders, more colloquially called addictions, there are a number of prominent theories of how the substance interacts with choice. Some argue that what we consider a substance use disorder is not its own disease but simply another existing psychiatric disorder such as depression or a traumatic stress disorder. On this view, those misusing opioids are self-medicating their pain and suffering. (Darke 2013) As a result, it is very difficult for the patient to decline their substance because it “treats” their existing illness (i.e., causes them to feel better) and they come to be dependent on it. When a person has a psychiatric disorder such as depression, they may still be deemed to have the capacity to make their own decisions. However, we see that ability as compromised by the way depression influences affect and motivation and try to support the patient to choose and implement a plan that is reasonably in their best interest. (Hindmarch et al. 2013) On this view, the person with an OUD has some power of choice but is very likely to perceive chronic use of opioids as a more desirable choice than is reasonable if one more appropriately weighed long-term consequences. This “self-medication” hypothesis has much to recommend it including that persons with OUDs often have additional diagnoses such as depression, bipolar disorder or a traumatic stress disorder (Kidorf et al. 2004). Their OUD may benefit from simultaneous treatment for the diagnosed psychiatric disorder. But this treatment insight also tends to undermine the hypothesis to some extent. When a patient’s psychiatric illness is effectively treated, the OUD still must also be treated. If the depression and the OUD were the same thing, treating and alleviating the depression should automatically alleviate the OUD. So, while they seem related, they are also differentiated phenomena. Others believe that addictions essentially constitute a “brain disease.” The substance, e.g., an opioid, affects pleasure centers in the brain and these neural patterns

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become altered through repeated exposure to the substance. (Volkow et al. 2016) Not having the substance creates a state of deprivation that is experienced as craving and significant emotional discomfort. Declining the substance is not a simple “take it or leave it” choice. The person who suffers from a substance use disorder has to be willing and motivated to deal with significant discomfort, quite possibly for an extended period of time, in order to end their dependence on the substance. Clinical ethicists need not settle on a definitive theory of addiction. This overview of current theories makes plausible the premise that patients with OUDs may have sufficient capacity to make decisions, but they may also have significant difficulty in the ongoing execution of choices and plans of care that are in their best interest. As a result, clinical ethics consultants and healthcare professionals can ethically justify taking measures that support the patient’s efforts to address their health needs. For instance, while keeping a patient in the hospital for several weeks simply to administer IV antibiotics would seem medically inappropriate and a profligate use of resources under most circumstances, the inpatient environment may enable the healthcare team to support the patient’s effort to abstain from using opioids during this period and reduce the danger of injecting the opioids into the line. The relative benefits of inpatient treatment and the risks of outpatient IV antibiotic administration are both higher for the patient with an OUD. Thus, keeping the patient in an acute care hospital simply to administer intravenous antibiotics could be recommended as ethically justifiable. This view of the person with a substance use disorder as having choice but in need of support to carry out healthy choices forms the foundation for analyzing most clinical ethical issues involving this patient population.

11.3

Ethical Issues in the Inpatient Setting

The medical care of patients with substance use disorders can raise a variety of ethical issues. However, only some of them are likely to lead to clinical ethics consultation. For instance, pain is subjective. It can be very difficult for a physician to know when a patient is genuinely experiencing severe pain that requires medication versus when that patient might be exaggerating their pain level because they crave a medication on which they are dependent. In recent years, clinicians have developed guidelines and protocols for the use of opioids in the treatment of pain so as to avoid prescribing patterns that are likely to facilitate a substance use disorder. Nevertheless, this subjective nature of pain implicitly means that how aggressively to treat a patient’s pain can pose a conundrum for a physician. (Rieder 2019) Such a particular judgment is unlikely to be appropriate for involving an ethicist. In general, when a particular patient acts in ways that undermine the treatment plan, it can easily trigger an ethics consultation. As our initial case presentation indicates, physicians may raise a resource allocation question by suggesting that offering to replace an infected mitral valve would be “wasting” resources on a patient who is non-adherent to their treatment plans. We have already noted how

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such a view is based on a mistaken notion of individual choice in persons with OUDs. However, an ethics consultant might also respond more practically based on the norms of medicine. There is little precedent for basing treatment or non-treatment on the degree of responsibility we ascribe to the patient for the illness. Many illnesses such as diabetes, heart disease and others are made more likely and severe by lifestyle choices. A person whose injuries were inflicted by a suicide attempt receives the full panoply of available trauma care. A physician’s duty is to help patients, namely to uphold beneficence. Medicine is not the judge, jury, and executioner of patients based on their perceived blame for the illness. Contemporary clinical ethics has long embraced a view that clinicians should work with patients to overcome the barriers that prevent them from fully adhering to treatment plans. (Orentlicher 1991; Browne et al. 2003) In a situation such as this one, a clinical ethics consultant would seek to recast the use of resources in terms of whether there would likely be an identifiable benefit to the patient from the mitral valve replacement and how the healthcare team might help the patient to maximize that benefit particularly when weighed against the risks and harms of other options such as no valve replacement. Other breaches of adherence to the treatment plan while an in-patient may trigger an ethics consultation. For instance, if a patient such as Mr. V is found to have a visitor bring him opioids that he uses in the hospital, healthcare professionals may be unsure what to do. Renegotiating the care plan with the patient to increase observation of the patient and come to agreement on whether it is in the patient’s best interest to remove the intravenous lines may be recommended. Clear agreements on what will happen next if the new plan does not succeed may be helpful. Needless to say, working with patients who have an opioid use disorder can be frustrating for the healthcare team. Healthcare professionals wish to help their patients and these sudden setbacks in which the patient participates can stress the provider-patient relationships. Ethical and compassionate care of persons with substance use disorders can require adjustment of treatment goals and expectations. Including healthcare professionals with expertise in this area can also provide support to the healthcare team and insights that are useful.

11.4

Goals of Care: Harm Reduction or “Clean and Sober”?

The patient in our case needed to be managed for the potential withdrawal symptoms that would come from being hospitalized where he would no longer be able to selfadminister opioids. The attending physician prescribed the administration of a medication called Suboxone (Kuczewski, et al. 2018, p. 36). Suboxone contains the long-lasting opioid buprenorphine and is administered in order to prevent withdrawal symptoms and potentially alleviate the phenomenon of craving. Buprenorphine can also be prescribed on an ongoing basis to help the patient to

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avoid turning to illicit “street” drugs such as heroin. Ongoing prescribing of longacting opioids such as buprenorphine or methadone is often referred to as medication-assisted treatment (MAT) and can be seen as part of a strategy of “harm reduction.” A harm-reduction treatment strategy does not concern itself with what might be the best possible outcome for a patient, e.g., total abstinence for the rest of the patient’s life. As its name implies, this strategy tries to mitigate the injuries and deaths that can result from opioid use. (Rieder 2019, pp 220–231) Substituting a long-acting prescription opioid regimen for illegally-obtained heroin can often prevent infections such as endocarditis because the patient does not risk the infection that can come from using needles. There are many other harm reduction strategies aimed at the avoidance of death from overdose such as making the opioid-reversal medication Narcan available over the counter and even advocating “safe injection sites” where a person may inject their opioids under a watchful eye that will observe them for signs of respiratory distress. The more traditional treatment strategy seeks to promote continued abstinence from the use of opioids. The abstinence-only approach is most commonly associated with “12 Step” programs such as Narcotics Anonymous (NA). Through peer support, programs such as NA encourage the person with an addiction to avoid substance use one-day-at-a-time. NA explicitly eschews the use of medicationassisted treatment. (Narcotics Anonymous 2016) CECs are unlikely to be consulted in determining which kind of approach is best for a particular patient. Nevertheless, ethicists can and should encourage continuing education programs that help the treating teams to see either approach as consonant with sound clinical ethics and to develop the skills to implement either kind of approach with a patient. The basic duty of beneficence to patients means that physicians and healthcare professionals should try to help patients to achieve the best outcome possible for that patient. This can be something of a trial-and-error approach based on the patient’s wishes. In the case above, the patient had achieved abstinence for several months before returning to the use of heroin. During the presentation described, Mr. V was prescribed Suboxone during his hospital stay. An inpatient treatment program was sought but no spot was available by the time he completed his antibiotic therapy. So, a plan needed to be developed before discharge to home. Either he could be tapered from the Suboxone and he could again try to be abstinent or he could go home with a plan of medication-assistance while he awaited a slot in a treatment program to become available. Ethics consultants should promote patient-centered attitudes that do not claim one option is superior to another but that the best option is one developed in consultation with the patient and is most likely to help that patient.

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Conclusion

The epidemic of OUD in the United States leads to difficult situations and judgments for physicians and the healthcare team. Many of these situations put strain on the doctor-patient relationship because the physician has difficulty knowing how trustworthy the patient’s self-reports of pain are and whether the patient can and will commit to a course of treatment or if he will undermine the outcome by continued use of opioids. I have suggested that the clinical ethicist is equipped to assist in many of these situations by promoting appropriate attitudes toward patients with OUDs. The ethicist can help clinicians to understand the nature of addictions and foster an approach that seeks to partner with the patient and provide support in helping the patient to achieve a positive outcome. Furthermore, I have counseled realism in treatment goals. OUDs can be difficult to alleviate and the physician’s duty of beneficence may mean working toward a short-term goal of reducing potential harm to the patient. CECs involving patients with opioid use disorders may not be especially satisfying to the requestor as they will not always lead to clear paths forward that have definitive and positive outcomes. After all, substance use disorders are chronic disorders and treatment can be a process that involves setbacks. But, ethics consultation is ideally suited to be of help as it is an endeavor that operates in murky clinical and moral spaces and can bring clarity to the range of ethically appropriate choices even when not ideal.

References Browne, A., B. Dickson, and R. Van Der Wal. 2003. The Ethical Management of the Noncompliant Patient. Cambridge Quarterly of Healthcare Ethics 12: 289–299. Darke, S. 2013. Pathways to Heroin Dependence: Time to Re-Appraise Self-Medication. Addiction 108 (4): 659–667. Hindmarch T., M. Hotopf, G.S. Owen. 2013. Depression and Decision-Making Capacity for Treatment or Research: A Systematic Review. BMC Med Ethics 14(3). https://link.springer. com/article/10.1186/1472-6939-14-54. Accessed 15 Dec 2020. Kidorf, M., E.R. Disney, V.L. King, K. Neufeld, P.L. Beilenson, and R.K. Brooner. 2004. Prevalence of Psychiatric and Substance Use Disorders in Opioid Abusers in a Community Exchange Program. Drug and Alcohol Dependence 74 (2): 115–122. Kuczewski, M.G., R.L.B. Pinkus, and K. Wasson. 2018. An Ethics Casebook for Hospitals: Practical Approaches to Everyday Ethics Consultations. 2nd ed. Washington, DC: Georgetown University Press. Narcotics Anonymous. NA and Persons Receiving Medication-Assisted Treatment, NA World Services, Inc. 2016. https://www.na.org/admin/include/spaw2/uploads/pdf/pr/2306_NA_ PRMAT_1021.pdf. Accessed 11 Dec 2020. National Institute on Drug Abuse. Overdose Death Rates. March 10, 2020a. https://www. drugabuse.gov/drug-topics/trends-statistics/overdose-death-rates. Accessed 11 Dec 2020.

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———. Opioid Overdose Crisis. May 27, 2020b. https://www.drugabuse.gov/drug-topics/opioids/ opioid-overdose-crisis#:~:text¼2018%20data%20shows%20that%20every,die%20after%20 overdosing%20on%20opioids.&text¼The%20misuse%20of%20and%20addiction,as%20 social%20and%20economic%20welfare. Accessed 11 Dec 2020. Orentlicher, D. 1991. Denying Treatment to the Noncompliant Patient. Journal of the American Medical Association 265 (12): 1579–1582. Rieder, T. 2019. Pain: A Bioethicist’s Personal Struggle with Opioids. New York: HarperCollins Publishers. Volkow, N.D., G.F. Koob, and T. McLellan. 2016. Neurobiologic Advances from the Brain Disease Model of Addiction. New England Journal of Medicine 374: 363–371.

Chapter 12

The Opioid Crisis: A European Perspective Ralf J. Jox

Abstract Covid-19 has overshadowed another severe health crisis, which has also been called an epidemic, though not of infectious origin: the misuse of opioid drugs that has generated an enormous morbidity and mortality, particularly in North America, but threatening to increasingly affect Europe as well. In this crisis, misuse, overuse and underuse of opioid medication converge to form an intricate public health problem. This article reflects on some salient ethical implications of the opioid crisis from the lens of a clinical ethicist, exemplified by real case vignettes of clinical ethics consultation (CEC) in a Swiss university hospital. In the ethical analysis, potential responses to this crisis will be presented on three levels: the micro-level of individual clinical ethics, the meso-level of organizational ethics in healthcare institutions, and the macro-level of public health ethics. The important role of clinical ethicists will become evident, particularly for the first two levels. Keywords Opioid crisis · Opioid overuse · Opioid underuse · North America · Europe · Ethics · Ethics consultation

12.1

Objectives

1. To compare the opioid crisis in North America with the situation of opioid use in Europe, emphasizing the ethical challenges of opioid overuse. 2. To highlight the related challenge of opioid underuse and lack of access to opioids. 3. To suggest various responses to this double challenge on the micro-, meso-, and macro-level of healthcare systems.

R. J. Jox (*) Institute of Humanities in Medicine and Palliative and Supportive Care Service, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_12

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Case 1

A man in his forties was hospitalized with terminal cancer and an opioid addiction. The treating team on the palliative care ward could not establish a relationship of trust with him because they could not determine whether his demands for ever higher opioid doses was due to insufficiently managed pain or to his addiction. The breakdown of trust in fact led several medical and nursing teams on various hospital units to refuse an admission of this patient to their unit, with the discriminatory effect that the patient was pushed from one unit to another and did not receive coherent, continuous care.

12.3

Case 2

A homeless 70-year-old patient with chronic musculoskeletal pain and an opioid addiction regularly came to the medicalized heroin (diacetylmorphine) administration program of the hospital where he received safe injections of heroin under close surveillance and proper hygiene. Due to his comorbidities and his high doses of heroin, he had an elevated risk for cardiac arrest and had previously been resuscitated after a heroin injection in the outpatient clinic. The nurses refused to continue these heroin administrations because they felt that they were participating in doing harm (a violation of the principle of nonmaleficence) and could not assume the responsibility for the high risk of death under their care. Yet, the patient adamantly demanded to be kept in the program and the physicians remarked that the alternative drug use on the street would certainly be riskier for the patient, even if it could lessen the moral distress for the nurses.

12.4

Case 3

A 5-year-old boy suffering from a severe congenital myopathy with progressive respiratory insufficiency and continuous noninvasive ventilation was admitted to the pediatric intensive care unit due to an acute pneumonia. The boy was suffering from severe dyspnea and pain. When the medical team suggested giving opioids for the relief of pain and dyspnea, the parents refused to give their consent and explained this refusal, among other arguments, with their Muslim conviction that any kind of voluntary sedation would be prohibited by their faith. The information that correctly administered opioids do not have a sedative effect did not change the parents’ mind.

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Introduction

This chapter will approach the opioid crisis from a European perspective. The first part will describe problems with the overuse of and addiction to opioids in Europe in comparison to the opioid crisis in the United States and formulate some hypotheses that may explain the differences. Implications for CEC will be highlighted, referring to the case examples 1 and 2 (presented above) from our consultation service in Lausanne, Switzerland. The next section will examine the related problem of opioid underuse, especially in vulnerable and marginalized populations both in affluent countries and, even more so, in poor countries. Again, implications for CEC will be emphasized based on the third clinical case described above. The third section will eventually integrate opioid overuse and underuse in an ethical analysis. Suggestions will be put forward on how to responsibly react to this two-fold challenge on different levels: (a) on the micro-level in the patient-caregiver relation (individual clinical ethics), (b) on the meso-level of hospitals and other healthcare institutions (organizational clinical ethics), and (c) on the macro-level of healthcare policy and pharmaceutical drug regulations (public health ethics).

12.6

Opioid Overuse in Europe

Opioids are synthetic drugs that mimic the effect of natural opiates like morphine. They are developed and produced with the aim to treat severe pain (as analgesic) and are also used in sedation protocols (analgosedation). In the last two decades of the twentieth century, opioids were rather limited to treating severe cancer pain. According to the World Health Organization recommendations from 1986, opioids were to be prescribed according to an escalation model (“ladder”) with three steps, involving opioids of different potency on steps two and three (World Health Organization 1986). While it has been long known that some opiates and opioids can be addictive (classically morphine and heroin), a widespread opinion at that time thought that medical opioid administration for pain relief would not lead to psychological drug addiction. During the first two decades of the twenty-first century, however, this picture has changed. Especially in the United States (US), the number of prescribed opioids increased substantially, reaching a peak in 2017 (Center for Disease Control 2020). The increased prescription of opioids was followed by an increase in mortality due to opioid overdose. The main drugs responsible for these overdose deaths have changed in three waves. The first wave of deaths was caused mostly by methadone and natural and semi-synthetic opioids. A second wave began around 2010 when the number of heroin-induced overdoses deaths increased steeply. Finally, after 2015, most overdose deaths were due to synthetic opioids such as fentanyl (O’Donnell et al. 2017). The associated morbidity is enormous and involves, in particular,

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neonatal opioid withdrawal syndromes and injection drug-related infections like HIV and hepatitis (National Institute of Drug Abuse 2020). It has even been discussed whether the recent decrease in US life expectancy may be partially influenced by the opioid crisis, but this hypothesis has recently been disproven (Mehta et al. 2020). Due to the substantial morbidity and mortality and the dynamic of the development, the opioid crisis has also been called an epidemic. With the global Covid-19 outbreak, most severely in the US, some experts are worried that the opioid crisis may worsen again due to increased opioid use, Covid-19- and lockdown-induced morbidity, and related factors (Becker and Fiellin 2020). The outbreak of the opioid crisis in North America has been associated with aggressive pharmaceutical marketing for opioids beginning in the late 1990s, but also with well-intentioned medical expert opinions encouraging widespread use of opioids in chronic non-cancer pain for which an addictive risk was regarded as negligible (Rummans et al. 2018). Over-prescribing of these drugs was, however, also tied to certain features of the American healthcare system that encouraged the excessive administration and use of these drugs (Lyapustina et al. 2016). In Europe, the average consumption of narcotic drugs per inhabitant is substantially lower than in the US (Verhamme and Bohnen 2019). Reasons for this may be the comparatively strict rules on narcotic prescription drugs in most European countries, with specific laws and prescription surveillance, but also the higher availability of other synthetic recreational drugs for addiction purposes (Soriano 2019). Nevertheless, some European countries show a recent increase in opioid prescription and mortality, such as France, the Netherlands, and Germany (Kalkman et al. 2019; Rosner et al. 2019; Chenaf et al. 2019). Interestingly, there has not been much media coverage of the North American opioid crisis in Europe, and awareness of this problem among healthcare professionals and the public is rather low. Moreover, analgesia has become a major criterion for healthcare quality evaluation. For these reasons, there is a definite risk that an opioid overprescription crisis may also develop in Europe, even if at a lesser scale than in North America. In our CEC service at a tertiary referral medical center in Lausanne, Switzerland, we have recently been called increasingly often for ethical questions in the management of patients with chronic pain and opioid addiction as indicated in the two cases that open this chapter. The ethical dimension of the opioid crisis has well been described (Yan and Kuo 2019). In affluent countries, a complex interaction between profit-maximizing pharmaceutical companies, overprescribing physicians and overdemanding patients leads to general pharmacological overtreatment, containing unnecessary, nonbeneficial or even harmful treatment for the patient. One of the reasons why this pharmacological overtreatment is particularly marked in analgesia may be the high value that painlessness plays in contemporary societies. The ethical implications of the opioid crisis do not, however, only pertain to the public health sector, but can also be perceived in clinical ethics, as the first two cases described above clearly show.

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Opioid Underuse

The problem of opioid overuse is closely linked to the inverse problem of opioid underuse. In fact, the latter was one of the reasons why opioid use for analgesia had been promoted in the 1980s and 1990s in the first place. Pain relief is essential for many diseases around the world, but it is conspicuous that the use of opioids is substantially lower in middle- and low-income regions of the world, in particular in Africa, Asia, Central and South America, the Caribbean, and Eastern Europe (Berterame et al. 2016). The reasons for this underuse of opioids for pain relief are linked to cultural factors, including poverty and overly restrictive laws (Vranken et al. 2017). It has been calculated that 50% of the world population lives in poor countries that receive only 1% of opioid analgesics, and the richest 10% of the world population consumes nearly 90% of all opioids for pain relief (Bhadelia et al. 2019). Even within affluent regions of the world, it is a common observation that not all patients with pain have the same access to opioid analgesics. In addition to pain management, opioids are also an effective symptomatic treatment of dyspnea, usually in significantly lower doses than for pain control (Thomas and von Gunten 2002). This indication, however, is notably less well known than the analgesic indication, leading to underuse of opioids for dyspnea management in a variety of regions, settings and patient populations (Tanghe et al. 2020; Vicent et al. 2017). Case 3 illustrates many of these phenomena. It is a recurrent experience wellknown in palliative care that some patients and families refuse the administration of opioids for religious reasons, but also for fears of addiction and side effects. It is evident that the opioid crisis and its huge associated morbidity and mortality can have the overshoot effect that necessary and safe administration of opioids is underused and that access to this class of medication is hampered. Therefore, it seems important to view both related problems of overuse and underuse from an ethical perspective.

12.8

Ethical Synthesis

When considering how to responsibly react to this two-fold challenge between overuse (misuse) and underuse of opioids, it seems reasonable to distinguish three levels: (a) on the micro-level the response of professional caregivers in their relation to patients (individual clinical ethics), (b) on the meso-level the response of hospitals and other healthcare institutions (organizational clinical ethics), and (c) on the macro-level the response of healthcare policy, governance and regulation (public health ethics). On the micro-level, the principles of biomedical ethics according to Beauchamp and Childress can help to identify appropriate obligations and responsibilities with regard to opioid use. The principle of beneficence requires physicians to offer

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optimal pain and dyspnea control using the adequate kind of opioid in the right dose. In order to be able to do this, physicians (and other healthcare professionals) should be sufficiently educated and trained in the use of opioids. The advent of specialized pain clinics and consultation services entails the risk that the knowledge about opioids is delegated and outsourced to specialists, while it actually constitutes a core competency that should be mastered by every physician and nurse. Patients who have an opioid use disorder (OUD) should have access to adequate, comprehensive treatment regimes (Uscher-Pines et al. 2020). At the same time, the principle of nonmaleficence requires physicians to carefully consider contraindications, interactions and risk factors for opioid misuse and addiction before prescribing these drugs. The dosage has to be titrated against the symptom and limited to the lowest dose that sufficiently controls the symptom. Non-opioid analgesics as well as co-analgesics (e.g. corticosteroids, antiepileptic drugs, antidepressants) should be used according to pain management guidelines. Regular symptom assessment and close surveillance of undesirable effects are essential components of opioid treatment. Physicians should also be careful not to prescribe too large quantities of opioid drugs at a time in the outpatient setting. On the meso-level, healthcare institutions such as hospitals and outpatient clinics should have clear, evidence-based and ethically well-balanced policies on the use of opioids and the associated problems of overuse, misuse, and underuse. Ideally, such policies include ways to identify particularly vulnerable patients and early risk factors for overuse, misuse, and underuse, as can be seen for example in the METAP policy of the Basel university hospital (Reiter-Theil et al. 2011). Institutions and healthcare providers may also appoint an experienced professional in charge of opioid surveillance and invest in continuous medical education for its members about the use of opioids. Finally, on the macro-level, responsible opioid use starts with a conducive legal framework. It seems plausible to apply stricter procedural requirements for the prescription of opioids and narcotics than for less risky medication. Aggressive marketing of opioids by pharmaceutical companies should be curtailed, both directto-consumer marketing and the marketing that aims to influence physicians’ prescription behavior. Public health policy should implement evidence-based programs to prevent opioid misuse, which may include a whole range of social security measures, adequate health insurance coverage, and screening measures. For those who have OUD, high-quality medical substitution programs can prevent additional morbidity and mortality, but the teams of such programs need good training, close supervision and ethics support. Another eminently important public health measure is the appropriate information of the general public about the risks of both opioid overuse and underuse. Given the importance of this medication, this is an essential part of any health literacy. Particular attention should be paid to individuals and communities that have overly negative or positive prejudices towards opioids (e.g. with regard to the refusal of sedation of some Muslims).

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Taken together, these approaches on the micro-, meso-, and macro-levels have the potential to promote a balanced, appropriate use of opioid drugs and navigate responsibly between the two fatal poles of opioid overuse and opioid underuse. Clinical ethics consultants have an important role in this endeavor, particularly on the micro- and meso-levels. They can sensitize clinicians to the problems and their ethical weight, help find and balance arguments in cases like the ones described in the beginning, and contribute to the development of ethically well-founded institutional policies on opioid management.

References Becker, W.C., and D.A. Fiellin. 2020. When Epidemics Collide: Coronavirus Disease 2019 (COVID-19) and the Opioid Crisis. Annals of Internal Medicine M20-12-10. https://doi.org/ 10.7326/M20-1210. Berterame, S., J. Erthal, J. Thomas, S. Fellner, B. Vosse, P. Clare, W. Hao, D.T. Johnson, A. Mohar, J. Pavadia, A.K. Samak, W. Sipp, V. Sumyai, S. Suryawati, J. Toufiq, R. Yans, and R.P. Mattick. 2016. Use of and Barriers to Access to Opioid Analgesics: A Worldwide, Regional, and National Study. Lancet 387 (10028): 1644–1656. https://doi.org/10.1016/ S0140-6736(16)00161-6. Bhadelia, A., L. De Lima, H. Arreola-Ornelas, X.J. Kwete, N.M. Rodriguez, and F.M. Knaul. 2019. Solving the Global Crisis in Access to Pain Relief: Lessons From Country Actions. American Journal of Public Health 109 (1): 58–60. https://doi.org/10.2105/AJPH.2018.304769. Center for Disease Control. 2020. Wide-Ranging Online Data for Epidemiologic Research (WONDER). National Center for Health Statistics: CDC. http://wonder.cdc.gov. Chenaf, C., J.-L. Kaboré, J. Delorme, B. Pereira, A. Mulliez, M. Zenut, N. Delage, D. Ardid, A. Eschalier, and N. Authier. 2019. Prescription Opioid Analgesic Use in France: Trends and Impact on Morbidity–Mortality. European Journal of Pain 23 (1): 124–134. Kalkman, G.A., C. Kramers, R.T. van Dongen, W. van den Brink, and A. Schellekens. 2019. Trends in Use and Misuse of Opioids in the Netherlands: A Retrospective, Multi-source Database Study. Lancet Public Health 4 (10): e498–e505. Lyapustina, T., L. Rutkow, and H.Y. Chang. 2016. Effect of a “Pill Mill” Law on Opioid Prescribing and Utilization: The Case of Texas. Drug Alcohol Depend 159: 190–197. Mehta, N.K., L.R. Abrams, and M. Myrskyla. 2020. US Life Expectancy Stalls Due to Cardiovascular Disease, Not Drug Deaths. Proceedings of the National Academy of Sciences of the United States of America 117 (13): 6998–7000. https://doi.org/10.1073/pnas.1920391117. National Institute of Drug Abuse. 2020. Opioid Overdose Crisis. NIH.. https://www.drugabuse.gov/ drugs-abuse/opioids/opioid-overdose-crisis. O’Donnell, J.K., R.M. Gladden, and P. Seth. 2017. Trends in Deaths Involving Heroin and Synthetic Opioids Excluding Methadone, and Law Enforcement Drug Product Reports, by Census Region – United States, 2006–2015. Morbidity and Mortality Weekly Report 66 (34): 897–903. https://doi.org/10.15585/mmwr.mm6634a2. Reiter-Theil, S., M. Mertz, J. Schurmann, N. Stingelin Giles, and B. Meyer-Zehnder. 2011. Evidence – Competence – Discourse: The Theoretical Framework of the Multi-centre Clinical Ethics Support Project METAP. Bioethics 25 (7): 403–412. https://doi.org/10.1111/j. 1467-8519.2011.01915.x. Rosner, B., J. Neicun, J.C. Yang, and A. Roman-Urrestarazu. 2019. Opioid Prescription Patterns in Germany and the Global Opioid Epidemic: Systematic Review of Available Evidence. PLoS One 14 (8): e0221153. https://doi.org/10.1371/journal.pone.0221153.

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Rummans, T.A., M.C. Burton, and N.L. Dawson. 2018. How Good Intentions Contributed to Bad Outcomes: The Opioid Crisis. Mayo Clinic Proceedings 93 (3): 344–350. Soriano, V. 2019. Why Not an Opioid Epidemic in Europe Like in the USA. AIDS Reviews 21: 233–235. Tanghe, M., N. Van Den Noortgate, L. Deliens, T. Smets, B. Onwuteaka-Philipsen, K. Szczerbinska, H. Finne-Soveri, S. Payne, G. Gambassi, L. Van den Block, and R. Piers. 2020. Opioid Underuse in Terminal Care of Long-Term Care Facility Residents with Pain and/or Dyspnoea: A Cross-Sectional PACE-Survey in Six European Countries. Palliative Medicine 34 (6): 784–794. https://doi.org/10.1177/0269216320910332. Thomas, J.R., and C.F. von Gunten. 2002. Clinical Management of Dyspnoea. Lancet Oncology 3 (4): 223–228. https://doi.org/10.1016/s1470-2045(02)00713-1. Uscher-Pines, L., H.A. Huskamp, and A. Mehrotra. 2020. Treating Patients With Opioid Use Disorder in Their Homes: An Emerging Treatment Model. JAMA. https://doi.org/10.1001/ jama.2020.3940. Verhamme, K.M.C., and A.M. Bohnen. 2019. Are We Facing an Opioid Crisis in Europe? Lancet Public Health 4 (10): e483–e484. https://doi.org/10.1016/S2468-2667(19)30156-2. Vicent, L., J.M. Nunez Olarte, L. Puente-Maestu, A. Oliva, J.C. Lopez, A. Postigo, I. Martin, R. Luna, F. Fernandez-Aviles, and M. Martinez-Selles. 2017. Degree of Dyspnoea at Admission and Discharge in Patients with Heart Failure and Respiratory Diseases. BMC Palliative Care 16 (1): 35. https://doi.org/10.1186/s12904-017-0208-x. Vranken, M.J.M., A.K. Mantel-Teeuwisse, S. Junger, L. Radbruch, W. Scholten, J.A. Lisman, M. Subataite, and M.D.B. Schutjens. 2017. Barriers to Access to Opioid Medicines for Patients with Opioid Dependence: A Review of Legislation and Regulations in Eleven Central and Eastern European Countries. Addiction 112 (6): 1069–1076. https://doi.org/10.1111/add.13755. World Health Organization. 1986. Cancer Pain Relief. Geneva: WHO. Yan, E., and D.J. Kuo. 2019. I Just Need an Opiate Refill to Get Me Through the Weekend. Journal of Medical Ethics 45 (4): 219–224.

Chapter 13

Ethical Issues in Complex Discharge Cases Kayhan Parsi

Abstract Discharging a patient from a hospital has become fraught with challenges in recent years. Patients may refuse a discharge to an environment that is considered to meet appropriate safety standards or such a “safe discharge” may not be possible. Moreover, a patient’s legal status may preclude an appropriate discharge. Patients who are unrepresented by family or friends may not have an appropriate surrogate to make healthcare decisions as well as care for a patient once they have been discharged. A discharge becomes difficult when there is an issue concerning ongoing patient safety or financing of placement in an appropriate facility. Difficult discharges are more accurately labeled complex discharges, as they often require the input of a variety of stakeholders, or medically complex discharges because of the need for the receiving venue to be able to meet the continuing medical needs of the patient. This chapter will discuss relevant ethical issues with regard to complex discharges. Principles such as autonomy, beneficence, nonmaleficence, and justice will be discussed, as will relevant organizational ethics issues. Our institution’s response to complex discharges will also be addressed. Keywords Complex discharge · Unrepresented · Autonomy · Beneficence · Nonmaleficence · Justice · Organizational · Four topics

13.1 1. 2. 3. 4.

Objectives

Describe a complex discharge case. Analyze how various stakeholders try to resolve complex discharges. Describe a committee model that analyzes various complex discharge cases. Interpret relevant ethical issues with regard to complex discharges.

K. Parsi (*) Neiswanger Institute for Bioethics & Health Policy, Loyola University Chicago Stritch School of Medicine, Maywood, IL, USA e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_13

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Case

A 57-year-old woman is admitted to a hospital after experiencing a massive stroke. She is stabilized, treated for her stroke, and no longer needs the level of care in an acute care hospital. The clinical team prepares her discharge plan. The patient is an undocumented immigrant and has no private insurance coverage. Because she lacks a lawful immigration status, she is not eligible for public assistance such as Medicaid. With no insurance coverage, long-term care facilities will not admit her. Her son is unable to care for her in his home. Despite having no acute care needs, she ends up staying in the hospital for over 2 years. Eventually, with the patient’s consent, she is repatriated to her home country of Poland. The hospital decides to review their discharge policies in light of the growing number of undocumented patients (Schlickerman 2012a, b).

13.3

Introduction

Discharging a patient from a hospital, once seen as routine, has become fraught with challenges in recent years. Patients may refuse a discharge to an environment that is considered to meet appropriate safety standards or such a “safe discharge” may not be possible. Moreover, a patient’s legal status may preclude an appropriate discharge. For instance, a patient who is an undocumented immigrant and lacks health insurance may not be able to be discharged to a long-term care facility (assuming such a facility is indicated). Patients who are unrepresented by family or friends may not have an appropriate surrogate to make healthcare decisions as well as care for a patient once they have been discharged. A discharge becomes difficult when there is an issue concerning ongoing patient safety or financing of placement in an appropriate facility. Difficult discharges are more accurately labeled complex discharges, as they often require the input of a variety of stakeholders, or medically complex discharges because of the need for the receiving venue to be able to meet the continuing medical needs of the patient. In the United States (US), the physician will make the determination whether a patient is ready to be discharged. Routine discharges are typically handled by a case manager in US hospitals, usually either a social worker or nurse. Complex discharges often require the skills of professionals from a variety of disciplines. Some commentators have noted how poorly prioritized discharges are within the workflow of most hospitals (Banja et al. 2007). This gap can be a significant drag on efficiency and patient well being. Patients and their families are not generally interested in staying in an inpatient setting any longer than necessary or indicated. Our institution has prioritized addressing complex discharges at an administrative level. As discussed, discharges may become difficult or complex for a variety of reasons:

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1. A safe discharge is not possible. 2. The patient lacks insurance for placement in an appropriate facility on the continuum of care. 3. The patient is undocumented and is not eligible for public assistance such as Medicaid which could cover placement in a long-term care facility 4. The patient (or the patient’s surrogate) refuses a safe discharge plan. The first scenario may occur if the patient is homeless and lacks stable housing. Other scenarios may involve a patient who needs support in their home. The second scenario may occur when a patient lacks insurance for placement in a facility that can address the sub-acute care necessary to the patient’s continued recovery such as a rehabilitation care facility. It may also occur when a patient lacks private funding to subsidize placement in a long-term care facility. Each scenario will be briefly discussed.

13.4

Unsafe Discharge

A discharge may become unsafe for a number of reasons. Frail patients who are at risk of falling may need a walker or the help of a home-health aide. Discharging a patient who does not have stable housing is an ongoing concern. If a patient needs home-health support but does not have stable housing, how can that patient obtain needed care? Other types of unsafe discharges may occur if a patient is returning to an environment with domestic abuse. How should such discharges be handled? Another source of concern is when a patient has a substance abuse problem. Should they be discharged to an environment where they can easily access drugs or with medical technology such as intravenous lines through which they may use substances?

13.5

Lack of Insurance

Lack of insurance in the US in particular creates a number of barriers. Long-term and other facilities that administer skilled care will not accommodate patients who either lack private insurance or public assistance or cannot self-pay. Although hospitals have a legal obligation through the Emergency Medical Treatment and Active Labor Act (EMTALA) to screen and stabilize patients, other care facilities have no comparable legal requirement. Even patients with “good” private health insurance may lack long-term care insurance. Such care is often paid out of pocket. For those individuals who qualify for Medicaid, nursing home care is an option. But Medicaid has very strict eligibility requirements based on income and may require that patients “spend down” their assets to qualify for coverage.

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Patients Who Are Undocumented Immigrants

Undocumented immigrants often face a number of barriers when they become patients. They may initially delay needed care because of fear or lack of insurance. If such a patient is treated in an acute care setting, the discharge planning process may need to start sooner rather than later. Patients who are undocumented immigrants often lack private health insurance and are ineligible for government assistant or insurance, such as Medicaid (Parsi and Hossa 2012). Several media accounts have reported that some of these patients were not discharged to an appropriate setting in the US. In some cases, the patient has been “medically repatriated” to their country of origin. This process has potential ethical and legal hazards. For instance, the case of Quelino Ojeda Jimenez was well publicized in Chicago because he was repatriated to his home country of Mexico without his consent (Schlickerman 2012a, b), where he eventually died. This case triggered the Advocate Health system to review and reform their policies. Other cases such as that of Barbara Latasiewicz (our initial clinical scenario) were noteworthy not because of consent issues, but rather because of the length of time she was in the hospital (Schlickerman 2012a, b). By the time she was repatriated to her home country of Poland, she had been at an Adventist hospital in Chicago for 2 years. In both the cases of Jimenez and Latasiewicz, they were undocumented and uninsured. Their immigration status was a significant factor in determining their discharge process and options. Some commentators have outlined how such repatriation efforts can be done in an ethical manner, focusing on best interests of the patient, due diligence on the part of the hospital, and ensuring that proper informed consent has been obtained (Kuczewski 2012).

13.7

The Patient or the Patient’s Surrogate Refuses a Safe Discharge Plan

The clinical team needs to inform patients, their surrogates, and their caregivers about the discharge process. The clinical team should include the “case manager, nurse, physician, physical and occupational therapist, social worker, and insurer” (Alper et al. 2020). The discharge plan should be clearly conveyed to the patient and their family. Enabling the patient to be appropriately discharged from a hospital should be a goal shared by everyone. On rare occasions, however, a patient or family member may refuse a safe discharge home. Some commentators have described this as a “person-focused” discharge problem (Jankowski et al. 2009). In these cases, it’s essential that the clinical team adequately trains the family and home caregivers. Although many families are skilled at home care, some may be intimidated by the new set of challenges that their loved one faces. With proper training, family members can become well skilled in the care of their loved one.

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Responses to Complex Discharge Cases

Institutions have a variety of ways to respond to complex discharges. A traditional approach has been to simply address each case in an ad hoc manner. The clinical team negotiates with the patient, family, and other institutions in ensuring the patient receives a safe and reasonably speedy discharge. Other members of the staff may be included, such as professionals from risk management, ethics, and legal counsel. The ad hoc approach, however, has its limitations. It does not provide consistency. Moreover, a stable set of resources may not be developed and used each time. At our institution, we first started responding to complex discharges with an ad hoc committee that would only assemble in response to a specific case. This committee was led by a physician and a case manager. This approach was helpful in that the committee was relatively nimble and could be assembled fairly quickly in light of a complex discharge case. As time went on, however, it became clear that a more stable kind of committee was needed. Thus, we have developed a complex discharge committee that meets on a weekly basis. These committee meetings are chaired by a physician and case manager. The committee reviews each case that has been identified by case managers, discussing the relevant medical facts, length of stay, and any other pertinent issues that may be impeding a safe and expeditious discharge. Typically, a nurse or social worker who have worked with the patient will attend the meeting and present the case to the committee. The committee will consider different issues relevant to the case at hand, such as length of stay and the barriers preventing the patient from being discharged. Nurses, risk management, and ethics consultants are present as well. The committee reviews patients who no longer need the services of an acute care hospital but face some kind of barrier in being discharged. Members will ask questions, raise issues, and suggest resources. This committee model has proven to be a valuable contribution to the hospital. As mentioned, a clinical ethics consultant will routinely attend. The ethics consultant will raise questions regarding the patient’s capacity, surrogate decision making, and standards of decision making (substituted judgment v. best interest) as well as issues of justice. The clinical ethics consultant’s role is to ask clarifying questions and ensure important and relevant ethical issues are considered when appropriate.

13.9

Relevant Ethical Issues

In complex discharge cases, clinicians should be attentive to relevant clinical and organizational ethical issues (Schlairet 2014). For instance, ensuring a safe discharge abides by the principle of non-maleficence. Patients should not be harmed during their hospital stay. This obligation extends beyond the hospital to whatever setting the patient will be discharged. A question that often arises is, “How long does this obligation apply?” Hospitals cannot control the environment to which patients will

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be discharged. Yet, a patient with either private health insurance or Medicare can be assured that they will receive follow up care if needed, such as home healthcare, Physical Therapy (PT), Occupational Therapy (OT), or rehabilitation. If someone lacks insurance coverage yet needs follow up care, does that potentially create an unsafe discharge? In such a case, it is essential that such a patient is enrolled with public assistance such as Medicaid. Another ethical principle is the principle of respect for autonomy. Clinicians should generally respect patients’ decision making about their care, once the risks, benefits and alternatives to care have been explained. As stated, the discharge decision is initiated by the physician. It is a medical decision whereby the clinician determines the patient no longer requires the services of an acute care hospital and is better served by either being at home or at some other type of facility. We often think of respecting patient autonomy as part of the treatment process. What does respecting patient autonomy mean in the discharge process? Patients can certainly ask questions about whether a discharge is too premature or whether they or their relatives are properly equipped to take care of themselves elsewhere. But respecting patient autonomy does not mean that clinicians have an obligation to acquiesce to every patient demand such as requests to remain in the hospital when they no longer require acute care. A patient-centered approach to care is not synonymous with a consumerist model. Clinicians need to clearly articulate why a discharge plan is indicated and be open to answering any questions. Perhaps the most challenging ethical principle with regard to complex discharges is the principle of justice. Distributive justice demands that we allocate scarce healthcare resources in a fair and equitable manner. Justice as fairness demands that we treat like cases in like ways. Unlike legal decision-making which is more formal and relies heavily on precedent, ethical decision making has greater flexibility. Committee members can take into consideration contextual features of a case, various stakeholders’ views, as well as the unique factors and challenges of a particular case. The four topics approach developed by Jonsen et al. (2015) is a model the ethics consultant can use to analyze such cases. We first need to review the facts of this case. What is the patient’s medical condition? Why do they no longer need the services of an acute care hospital? Next, patient preferences should be examined. Does the patient have capacity? If not, who is serving as the patient’s surrogate decision maker? Do they understand what options are available regarding discharge? Next, quality of life issues may be considered. Does the patient understand how a certain discharge will affect their quality of life (hopefully, for the better)? And lastly, what are some contextual issues that need to be addressed? If the patient lacks housing and is unrepresented, does a social worker need to engage members of the community to determine how the patient can be discharged safely? If the patient has a substance abuse disorder, how can a discharge be done in a safe and effective manner? Finally, as I have argued elsewhere, an organizational ethics approach may be indicated with complex discharge cases (Parsi and Hossa 2012). Such an approach presumes that there are various stakeholders in healthcare and that each have a set of ethical obligations. These obligations typically are aligned. Keeping a patient who

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does not need acute care services potentially harms the patient by exposing them to iatrogenic harms and it may also undermine the institution’s ability to care for other patients. The goal of our complex discharge committee is to ensure that stakeholder goals are aligned and that everyone can meet their professional and ethical obligations. The committee’s multidisciplinary approach allows everyone to voice their concerns and often facilitates rapid brainstorming to resolve challenging cases. Ethics is only part of it. Often, there are logistical, financial, and bureaucratic hurdles to clear. Having a variety of healthcare professionals meet and attend to these complex cases on a regular basis and in an established venue potentially helps everyone, especially the patient.

References Alper, E., T.A. O’Malley, and J. Greenwald. 2020. Hospital Discharge and Readmission. UpToDate: https://www.uptodate.com/contents/hospital-discharge-and-readmission. Banja, J., J. Eig, and M.V. Williams. 2007. Discharge Dilemmas as System Failures. AJOB 7 (3): 29–31. https://doi.org/10.1080/15265160601171762. Jankowski, J., T. Seastrum, R.N. Swidler, and W. Shelton. 2009. For Lack of a Better Plan: A Framework for Ethical, Legal, and Clinical Challenges in Complex Inpatient Discharge Planning. HEC Forum 21 (4): 311–326. Jonsen, A.R., M. Siegler, and W.J. Winslade. 2015. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. 8th ed. New York: McGraw-Hill, Inc. Kuczewski, M. 2012. Can Medical Repatriation Be Ethical? Establishing Best Practices. AJOB 12 (9): 1–5. https://doi.org/10.1080/15265161.2012.692433. Parsi, K., and J. Hossa. 2012. Complex Discharges and Undocumented Patients: Growing Ethical Concerns. The Journal of Clinical Ethics 23 (4): 299–307. Schlairet, M. 2014. Complex Hospital Discharges: Justice Considered. HEC Forum 26: 69–78. Schlickerman, B. 2012a. Polish Immigrant Headed Home. Chicago Tribune, March 1. https://www. chicagotribune.com/news/ct-xpm-2012-03-01-ct-met-polish-immigrant-goodbye-20120302story.html. ———. 2012b. Quadriplegic Immigrant Dies After Chicago-Area Hospital Returned Him to Mexico. Chicago Tribune, January 4. https://www.chicagotribune.com/lifestyles/health/ctmet-quelino-death-20120104-story.html.

Chapter 14

How Clinical Ethics Consultants Navigate Complex Acute Care Discharge Cases in Ontario Sally Bean and Julija Kelecevic

Abstract In Ontario, discharge planning is an overarching term referring to patient transitions through the healthcare system. Discharge planning encompasses the continuum of care from primary to acute care to post-acute care in the community or an institutional care setting. Due to its impact on related issues such as emergency department wait times, patient flow through the healthcare system has been an area of emphasis. Patients that are in acute care and awaiting discharge to another institutional setting such as a Long Term Care Home are designated as Alternate Level of Care (ALC). Because ALC patients could be receiving the level of care that meets their needs in another setting, this is considered an inefficient use of healthcare resources, and by extension thereby poses resource allocation concerns. In the authors’ experience, clinical ethics consultants are routinely consulted to assist with complex discharge planning cases. While the comprehensive range of ethical issues associated with discharge planning may vary based on the facts of the particular case there are four broad domains of issues that pertain to most acute care discharge planning in Ontario and include: (1) Resource allocation of finite healthcare resources (2) Supporting patient/substitute decision making (3) Moral distress and (4) Procedural fairness. An illustrative case is used to further draw on the four identified domains of issues and demonstrate the practical contributions of clinical ethics consultants to address complex discharge planning cases. Keywords Discharge planning · Resource allocation · Substitute decision-making · Moral distress · Procedural fairness

S. Bean (*) Ethics & Policy, Sunnybrook Health Sciences Centre, Toronto, Canada e-mail: [email protected] J. Kelecevic Hamilton Health Sciences, Toronto, Canada © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_14

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Objectives

1. Identify ethical challenges that arise when transitioning patients from acute to an alternate level of care. 2. Describe practical contributions of ethicists to address complex discharge planning cases. 3. Illustrate how discharge planning within the Canadian publicly funded healthcare system is an ethical issue.

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Case

Mr. X, a Mandarin-only speaking, first-generation immigrant to Toronto, Canada is in his mid- 80s. He suffered a massive stroke but no longer requires acute care and is ready for discharge. The interprofessional healthcare team assesses that he has achieved his new baseline and recommends 24/7 support for Mr. X. His spouse, Mrs. X, is the Substitute Decision Maker (SDM). She is also Mandarin speaking and is unable to provide the needed level of support at home. Mrs. X is in her early 80s and suffers from severe arthritis that significantly impairs her mobility. They do not have any children or other family members in Canada. Discharge to a long-term care home (LTCH), commonly referred to as a nursing home, is the recommended destination to meet Mr. X’s needs. Mrs. X agrees that a LTCH is the best choice for her husband. Given their racial and ethnic background, Mrs. X wants her husband to live in a LTCH where Mr. X would feel most at home and be with residents and staff that share his common language. Per the hospital’s discharge planning policy, Mrs. X is asked to select five LTCH facilities, including three from the frequent bed vacancy list. Mrs. X has visited several LTCHs and has identified only one that she feels meets her husband’s needs. Additionally, it is near their home so that she can continue to visit her husband regularly. Unfortunately, the wait list for their preferred facility is approximately 2-3 years. Mrs. X does not think any of the facilities listed on the frequent vacancy list are appropriate even though he would be there on an interim basis until their first choice is available. The healthcare team keeps reminding her of the risks to her husband of waiting in acute care such as the potential for hospital acquired infections and deconditioning. She would prefer he not have to wait in the hospital but feels that the hospital is a better option than other LTCHs. Unfortunately, all of the facilities with interim vacant beds would require at least a one-hour commute on public transit each way for her to visit. Such trips are not feasible for Mrs. X because of mobility challenges. Mrs. X states that she feels she is being pressured to make a decision that will be detrimental to both she and her husband. According to a 2005 study of ethicists practicing in Toronto, Ontario discharge planning was not explicitly identified as one of the top 10 healthcare challenges facing the public. However, this concern implicitly appears in two of the top three

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issues that were identified: long wait lists and access to resources for aged, chronically ill and mentally ill (Breslin et al. 2005). We anticipate that if this study were to be duplicated now, discharge planning would unequivocally appear as a standalone topic in the top 10. In Ontario, the most populated Canadian province, discharge planning is an overarching term referring to patient transitions through the healthcare system. Discharge planning encompasses the continuum of care from primary to acute care to post-acute care in the community or an institutional care setting. Historically, discharge of a patient from acute care hospitals has been an area of emphasis for the Ministry of Health of Ontario due to its impact on related issues such as emergency department wait times, patient flow through the healthcare system, and wait lists. Additionally, because the authors work in the acute care context as Clinical Ethics Consultants, discharge planning from the acute care setting will be our focal point. Discharge planning in Ontario is a complicated issue that is governed by a patchwork of four distinct pieces of provincial legislation and associated regulations, which fosters some confusion around applicable rules, namely the Healthcare Consent Act, Health Insurance Act, Long-Term Care Homes Act and Public Hospitals Act (HCCA 1996; HIA 1990; LTCHA 2007; PHA 1990). In the past fifteen years, hospital occupancy levels have become a pressing issue in Canada and many hospitals routinely operate at over 100% capacity which requires care to be delivered in unconventional spaces such as hallways (Grant 2017). The aging population demographic, decrease in number of hospital beds over time (Ontario has the lowest number of acute care beds per capita among the provinces), as well a shortage of LTCH beds have contributed to the hospital occupancy issue (OHA 2019). Indeed, some Ontarians are calling it a “healthcare emergency” (Frisque 2020). Therefore, for acute care hospitals, facilitating patient flow through the organization is a constant point of emphasis. Many Ontario hospitals have developed gridlock policies to invoke when the demand for acute care beds well exceeds availability (Pelley 2018). During a gridlock, health services such as non-emergency surgeries that require an inpatient bed, for example, have to be delayed, and ambulances rerouted to other hospitals until the bed pressure is alleviated. Patients that are in acute care and awaiting discharge to another institutional setting such as a LTCH, complex continuing care, rehabilitation, or palliative care environment, are designated as Alternate Level of Care (ALC). In 2009, in an effort to promote consistency and fairness, a standardized definition for ALC was issued for all acute care hospitals to apply to appropriate cases. ALC is defined as, “When a patient is occupying a bed in a hospital and does not require the intensity of resources/services provided in this care setting (Acute, Complex Continuing Care, Mental Health or Rehabilitation), the patient must be designated Alternate Level of Care at that time” (CCO 2009). Because ALC patients could be receiving the level of care that meets their needs in another setting, this is considered an inefficient use of healthcare resources. ALC rates in Ontario vary among regions; however, recent data from September 2019 demonstrates that 17% of Ontario hospital beds were occupied by ALC patients

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(OHA 2019). The publicly funded healthcare system in Canada is oriented around care provided in hospitals and by physicians. Therefore, an inability for patients to access timely acute care due to system gridlock poses a significant health system ethics issue in which the ability to redress the problem lies beyond the resolution of a particular patient case. Moreover, it is a significant issue for both complex patientspecific cases and routine ALC discharge planning cases when aggregated across the province, thereby compromising healthcare system efficiency. Increasingly many are recognizing that the acute care occupancy issue in Ontario is reaching a crisis level. Current legislation is deferential to patient/SDM decisionmaking around LTCH choices which curtails hospital’s ability to promote health system efficiency (HCCA 1996; LTCHA 2007). As a stopgap measure to try and eliminate care provision in unconventional spaces, such as hallways, numerous Reactivation Care Centres (which are commonly decommissioned acute care hospitals that are “reactivated” to provide care for ALC patients) have been developed to provide support for ALC patients awaiting an alternate level of care facility, most commonly LTCHs (MOHLTC 2019; OPC 2019). There are plans to build more LTCHs to accommodate the increasing demand. Nevertheless, but it will be some time before the LTCH bed supply is significantly increased and the LTCH demand will continue to increase exponentially with the aging demographic. While the comprehensive range of ethical issues associated with discharge planning may vary based on the facts of the particular case, such as geographic location, there are four broad domains of issues that pertain to most acute care discharge planning in Ontario (Table 14.1).

14.3

Application to Clinical Ethics Consultation

In our experience, Clinical Ethics Consultants are routinely consulted to assist with complex discharge planning cases and participate in reviewing or developing institution-specific hospital discharge planning policy and resources to support front-line staff such as physicians, social workers, transition care coordinators, occupational therapists, and physical therapists. In considering Mr. X’s case, a hospital-based ethicist would receive a request for an ethics consultation, most commonly from the healthcare team, to assist with this case. After the interprofessional assessment for LTCH eligibility, Mr. X was deemed incapable of medical decision making (i.e. per legislation, is unable to both understand the relevant information and appreciate the reasonably foreseeable consequences of a decision or lack thereof). So, the CEC had to deal with his SDM which is his spouse (HCCA 1996). Additionally, there is a language barrier for both the patient and SDM which is correlated to a longer inpatient stay (Bowen 2015). These types of non-medical factors contribute to case complexity and extended hospital stays (Jankowski et al. 2009). The language barrier can be mitigated through the use of an interpreter but this added logistical step necessitates communication be scheduled to accommodate the use of an in-person interpreter. The use of an over-the-phone

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Table 14.1 Illustrative domains and ethical issues associated with discharge planning Domains of issues 1.Resource allocation of finite healthcare resources

2.Supporting patient/SDM decision- making

3.Moral distress

4.Procedural fairness

Associated ethical concerns Criteria applied to LTCH waitlists includes urgency of need, first-come, first-served, and accommodation preference (i.e. private room, semi-private, or ward) Access to care, i.e. gridlock and negative impacts on patient flow and wait times Balancing patient choice with institutional and systemic resource pressures Geographic access inequities, e.g. less LTCH bed availability in rural areas Informed consent without undue pressure of financial penalties Empowering patient/SDM to understand all of their options Teasing out between the best interest for the patient and best interest for the SDM/family Clarifying which discharge-related decisions require consent; for example, in Ontario, consent is not required to discharge a patient from an acute care hospital Managing patient expectations around access to services in community SDMs unable to reach consensus on facility choices Acknowledging that capable patients can choose to live at risk in the community, if desired Dual loyalty conflict: healthcare providers may feel torn between a duty to advocate for current patient and future patients needing access to acute care No available facilities that meet patient/SDM preferences, or not available in a timely manner Potentially unrealistic patient/SDM expectations Healthcare providers feel pressured to implement policy which may negatively impact their therapeutic relationship with patient/SDM Navigating turbulent family dynamics Promoting justice supports necessity to have a fair, consistent, and transparent institutional policy; also need for consistent inter-institutional practices for consistency among and between hospitals Equity in fees charged for ALC patients, i.e. fees are charged fairly and consistently among patients and hospitals Patients/SDMs with the ability to pay for private or semiprivate room LTCH accommodations are treated the same as patients awaiting ward LTCH accommodations Complex patients with issues such as addictions or responsive behaviours are not unduly disadvantaged in accessing LTCHs that meet their needs

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interpreter may also be a possibility and allow greater flexibility as long as the key stakeholders do not have hearing impairments or other disabilities that would render communication ineffective. In this case, the hospital and staff have competing obligations between enabling person-centered care that is expressed through informed choice without coercion versus supporting patient flow so that future patients can reasonably access acute care when needed. An ethicist consulted on this case would gather the facts by speaking to key stakeholders including the patient (if feasible), the SDM, and the interprofessional healthcare team. Additionally, the ethics consultant would review the institution’s discharge planning policy to ensure familiarity with the process. It is also essential that the ethicist is conversant with the legal requirements, particularly in the event the institution’s policy or informal practices are in tension with legal requirements. In this case, it would be important to clarify with the healthcare team that because Mrs. X has selected one choice, she has fulfilled her legal requirement to apply to at least one LTCH (LTCHA 2007). While the hospital policy requests an individual to select five LTCH choices, it does not have the legal ability to require it (LTCHA 2007). The argument could be made the SDM has a moral obligation in a publicly funded healthcare system to select more than one LTCH but this would not be a binding or compulsory obligation. Naturally, conflict resolution could occur in which the SDM would be requested to select additional choices for an interim bed at other LTCHs. Given that providing racial and ethnic familiarity for her husband is an important value of the SDM, interprofessional team members could identify if any additional community supports might be accessed to meet those needs to the extent possible in an interim LTCH facility. In Ontario, there is little recourse if an SDM has fulfilled their legal obligation by choosing one facility unless the reasoning or choice is clearly detrimental to the patient’s well-being (LTCHA 2007; HCCA 1996). In cases in which the SDM is arguably not acting in accordance with a patient’s prior capable wishes or if unknown, the patient’s best interests, for LTCH applications, the Local Health Integration Network can make an application to a quasi-legal tribunal (available only in Ontario) called the Consent and Capacity Board (CCB) that can adjudicate the issue (CCB n.d.; HCCA 1996). In this case, it is unlikely that the CCB option would be justifiable or successful given the wife’s rationale for choosing the LTCH for her husband. In this case, the CEC’s role would mostly tilt toward supporting the team to understand the legal requirements, institutional policy and limited options under the circumstances. However, it would be reasonable to check in with the SDM at regular intervals or when a change in the patient’s health status occurs to revisit if the current plan is still the most appropriate plan.

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Conclusion

We have provided an overview of the ethical issues that arise with discharge planning in the province of Ontario, Canada. Although language, culture and MR. X’s family structure constrain the SDM’s choices, this patient did not have additional confounding factors such as smoking, cannabis or alcohol use, addictions, responsive behaviours, etc. that are common variables in complex discharge planning cases. While discharge-related legislation varies province to province, Clinical Ethics Consultation colleagues in other Canadian provinces share similar experiences. Despite recent initiatives to reduce hospital occupancy, the issues related to discharge planning remain an ongoing concern for the foreseeable future. With the aging population that lives longer with more co-morbidities, legislative review should be contemplated to reflect a balance in competing needs of access to acute care hospitals and patient/SDMs autonomous choice for LTCH setting.

References Bowen S. 2015. “The Impact of Language Barriers on Patient Safety and Quality of Care” – Final Report for the Société Santé en français, http://www.reseausantene.ca/wp-content/uploads/201 8/05/Impact-language-barrier-qualitysafety.pdf. Breslin, Jonathan M., Susan K. MacRae, Jennifer Bell, Peter A. Singer, and University of Toronto Joint Centre for Bioethics Clinical Ethics Group. 2005. Top 10 Health Care Ethics Challenges Facing the Public: Views of Toronto Bioethicists. BMC Medical Ethics 6 (5) https://doi.org/10. 1186/1472-6939-6-5. CCB (Consent and Capacity Board). n.d. “About Us.” Queen’s Printer for Ontario, 2012–15, http:// www.ccboard.on.ca/scripts/english/aboutus/index.asp. CCO (Cancer Care Ontario). 2009. Alternate Level of Care. July 1, 2009, http://ocp.cancercare.on. ca/cms/One.aspx?portalId¼14464&pageId¼43214. Frisque, Graeme. 2020. “‘Lives Are at Risk’: Brampton Declares Health Care Emergency, Demands Funds to Stop ‘Hallway Medicine.’” Brampton Guardian, January 22, 2020. https:// www.bramptonguardian.com/news-story/9817445%2D%2Dlives-are-at-risk-bramptondeclares-health-care-emergency-demands-funds-to-stop-hallway-medicine-/. Grant, Kelly. 2017. Hospital Overcrowding Has Become the Norm in Ontario, Figures show. Globe and Mail, May 21, 2017. https://www.theglobeandmail.com/news/national/hospitalovercrowding-has-become-the-norm-in-ontario-figures-show/article35076965/. HCCA (Health Care Consent Act). 1996. SO 1996, c 2, Sch A (Ontario, Can), https://www.ontario. ca/laws/statute/96h02. HIA (Health Insurance Act), RSO 1990, c H.6 (Ontario, Can), https://www.ontario.ca/laws/statute/ 90h06. Jankowski, Jane, Terese Seastrum, Robert N. Swidler, and Wayne Shelton. 2009. For Lack of a Better Plan: A Framework for Ethical, Legal, and Clinical Challenges in Complex Inpatient Discharge Planning. HEC forum 21 (4): 311–316. LTCHA (Long-Term Care Homes Act), 2007, SO 2007, c 8 (Ontario, Can), https://www.ontario.ca/ laws/statute/07l08.

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MOHLTC (Ministry of Health and Long-Term Care). 2019. News release: Ontario opening more transitional care beds in the Greater Toronto Area. July 17, 2019, https://news.ontario.ca/ mohltc/en/2019/07/ontario-opening-more-transitional-care-beds-in-the-greater-toronto-area. html. OHA (Ontario Hospital Association). 2019. Ontario Hospitals – Leaders in Efficiency., Toronto, ON, https://www.oha.com/Documents/Ontario%20Hospitals%20-%20Leaders%20in%20 Efficiency.pdf. OPC (Ontario Premier’s Council) on Improving Healthcare and Ending Hallway Medicine. 2019 Hallway Healthcare: A System under Strain. January 2019. http://www.health.gov.on.ca/en/ public/publications/premiers_council/docs/premiers_council_report.pdf. PHA (Public Hospitals Act), RSO 1990, c P.40 (Ontario, Can), https://www.ontario.ca/laws/statute/ 90p40. Pelley, Lauren. 2018. Code Gridlock. CBC News, March 19, 2018, https://newsinteractives.cbc.ca/ longform/brampton-civic-emergency-department.

Chapter 15

Thorny Issues in Clinical Ethics Consultation: When Surrogates Refuse Basic Care Sarah Vittone

Abstract Refusal of basic care for decisionally incapacitated patients by surrogate decision makers is an unexpected, unusual yet complex issue for ethics consultants. This basic care is generally provided for the patient by caretakers or surrogates in a residential setting and includes basic and ordinary treatments and interventions with high critical benefit and low burden. Refusal of basic care in an inpatient setting is inconsistent with curative and palliative care goals. This refusal creates tensions between the surrogate’s role to protect and act as the decision maker, their refusal of the basic care, the clinician’s reaction or nonreaction; respect for patient dignity, justice and beneficence; and professional obligations to provide expert quality care. Clinicians, while respecting the surrogate’s role in substituted judgement, should not defer to the surrogate’s either passive or active decisions that may cause harm. Clinicians who acquiesce to basic care refusals risk clinical neglect. Further, the response of clinicians to this refusal may be complicated by their own moral distress, an error in judgment, their perceived duty to defer to the surrogate and fear of liability, or conflict with the surrogate. How clinicians respond to surrogate’s refusal is dependent on their understanding and application of ethical principles, their perceived role of the surrogate, and their perceived professional and moral obligations to the patient. Ethics consultants offer facilitation for resolution by providing clarification of context with grounded expectations for the surrogate’s role as decision maker. Keywords Surrogate · Refusal · Obligations · Ethics · Basic care · Shared decision making

S. Vittone (*) School of Nursing and Health Studies, Georgetown University, Washington, DC, USA e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_15

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Objectives

1. Identify specific challenges associated with surrogate refusal of basic care. 2. Describe the role and obligations of surrogate decision makers and clinical providers regarding shared decision making, specifically, refusal of basic care. 3. Apply ethical principles to address and resolve basic care refusals by surrogate decision makers.

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Case 1

A 68-year-old mother of three who suffered from dementia and was decisionally incapable was admitted to an acute care hospital unexpectedly post mandibular repair and dental surgery. She had had unexpected complications with the procedure and required acute care monitoring rather than discharge to home as had been planned. The patient also had a stage-three decubitus ulcer on her sacrum. The patient was not oriented and had to be acutely mitt-restrained on both hands to prevent disruption of the surgical site. The daughter, acting as surrogate, refused pain management for the patient, saying “Mom always moans and groans. She always says we are hurting her.” The surrogate also refused to have the patient repositioned, stating “Mom likes to lay on her back.” While the clinical team disagreed, they acquiesced to the surrogate’s refusal of care. The patient has two known sources of pain, as well as the physical restriction by the restraint, all of which were considered by the team to be uncomfortable for the patient. The team continued recommending pain medication and turning. The patient moaned and groaned and frequently said “Stop. You are hurting me,” even when she was not being touched.

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Case 2

An 83-year-old widowed mother of four, is a visitor to the United States (US) on a visa from Ethiopia. She has had two previous short-term hospitalizations with surgery for ulcerations. This third admission in less than five months owes to a change in mental status and possible sepsis. The treating team prescribes fluids, antibiotics, and wound care to three infected, open post-operative, partial to full thickness, 6–9 cm posterior wounds. The identified surrogate has refused both the specific wound care prescribed by the plastics surgery consultation team and pain management options including morphine, Tylenol, heat/cold packs and patient repositioning including turning. Further, the surrogate has refused female clinicians from both medical and nursing staff. The surrogate has refused general hygiene as well as pulmonary hygiene and mouth care. The clinical team wants to work with this family and maintain the patient’s placement for home care.

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Introduction

When surrogates refuse basic care for the decisionally incapacitated, clinicians may react with surprise and confusion, especially in the face of curative goals of care. The response of clinicians to this refusal may be complicated by their own moral distress, an error in judgment, their perceived duty to defer to the surrogate and fear of liability, or conflict with the surrogate. Further, the challenges associated with surrogate refusal of basic care may center around the surrogate’s motivation for the refusal, and their perceived impact of the decision on the patient. These tensions among the surrogate’s role to protect, their refusal of basic care, and the clinician’s reaction or nonreaction, is a complex issue and pose challenges for ethics consultants as clinicians seek assistance with this unusual problem. Basic care for the purposes of this chapter is defined as evidence-based health promotion, illness prevention and care described as ordinary, i.e., care that a reasonable person would want to do for him/herself for the maintenance or enhancement of current or future health outcomes. This includes patient turning, ambulation, physical and occupational therapy, wound care, hygiene – general and specific, pain management, and oral feeding if patient is able and willing. This daily basic care is generally provided by caregivers in the home setting but becomes the responsibility of the hospital, skilled care, rehabilitation or other healthcare organization upon patient admission. These are treatments and interventions with high critical benefits and low burden. In 2008 Centers for Medicare Services (CMS) began to deny reimbursement should there be evidence of failure to provide basic care, such as acquired pressure ulcers. The medical and nursing staff are in fact obligated to assure that basic and ordinary care are provided based on principles of dignity, justice and beneficence. This care provides for the physical good of the patient specifically (Pellegrino and Thomasma 1988).

15.5

The Role of the Surrogate

The purpose of having a surrogate decision maker is to extend patient autonomy beyond the patient’s capacity to express it. Since the landmark Quinlan case established this role for surrogates (In re Quinlan 1977), we have had more than fifty years of clinical experience with surrogates acting to ensure patient’s autonomy using primarily the substituted judgment standard of decision making. The American Hospital Association (2003) position statement and the American Medical Assocation Code of Ethics (2016) highlight the role of the surrogate in applying the substituted judgment and best interest standards of decision making for persons incapable of decision making. The surrogate is obligated to the same responsibilities as the patient as well as to assure: (1) Relief of suffering (2) Preservation of physical and mental function (3) Respect for human dignity (4) Enrichment of the patient’s quality of life and (5) Protection of the patient from harm. Thus, the surrogate who refuses basic care may call into question their capacity to fulfill the surrogate role and obligations.

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Shared Decision Making and Refusal

Shared decision making in healthcare is a best practice when persons are incapacitated and decisionally impaired. The surrogate and clinicians are joined in this shared relationship. Shared decision making is complex and depends on a delicate balance in interpreting the patient’s good from both the surrogate and clinician’s perspective. While this shared dimension is ideal, the balance usually leans toward the surrogate because of their prior knowledge of patient wishes. The trust necessary in this relationship may be damaged when a surrogate and the clinicians view care refusals through opposing lenses. Surrogate decision makers are often less health literate than clinicians expect or anticipate. Outside of the healthcare arena, these surrogates are independently making decisions for their dependents without a shared expectation. The surrogate’s primary control over the well-being of the patient becomes more limited once the clinician becomes a partner. The role and responsibilities for clinicians partnering with surrogates is designed to proceed as if the patient themself was present. Surrogates are responsible to honorably share the essence of the patient’s person, their desires and wishes, and to channel them, per se, in making choices for which the context may have never presented while the patient was capable. Further, and perhaps more perplexing are surrogates who desire curative goals of care, consent to recommended care, including surgery, and then refuse aspects of post-operative care such as standardized wound care or pain management. Basic care is necessary for both curative and palliative goals of care. This hindering of care by surrogates confounds the clinical team.

15.7

Is Surrogate Refusal Also Neglect?

While we accept and respect that persons may choose for themselves to intentionally neglect their own health through refusal, this right does not carry over to a surrogate deciding for others. Self-neglect by capable decision makers may end in poor health outcomes to which health providers uncomfortably bear witness. When surrogates neglect care for their dependents at home in the community setting, it is commonly reported where community protective services are available to intervene. When a surrogate refuses basic care for a patient while in an acute care or skilled care facility, where the patient is under the direct care of the clinical staff, the complicity by clinicians may be considered intentional in nature. Clinical neglect, i.e. professional, medical or patient neglect, occurs when there is a failure to provide standard of care or when there is a deviation from it. In the frame of basic care, the neglect is the failure to provide the prudent, indicated care that a reasonable person would expect to be provided (Mathes and Reifsnyder 2014, p 94). In 2013, Reader and Gillepsie reported a systematic review of patient neglect. They highlight the complexity of defining neglect considering the clinical, legal and social influences on meaning.

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Fourteen articles were reviewed and antecedents to patient neglect were described. No reports describing refusal of care by surrogates were identified as precursors to neglect. The paucity of discussion of the problem may influence the clinician’s response or lack of response when a case presents. The first intervention is to consider the motivation for the refusal by the surrogate. The motivation may be a misunderstanding or a misjudgment, that the refusal of the basic care is furthering harm especially if the care is fundamentally different that the usual home care the patient receives. For example, surrogates may not perceive the impact of laying in one position for extending time as being harmful. In the context where there is a known source of pain, the surrogate may still not perceive the patient’s moans as a pain response if the patient commonly moans.

15.8

Response of the Clinician

There is a professional and moral obligation to provide basic care. Both the American Nurses Association (ANA) Code of Ethics for Nurses (2015) and the AMA Code of Ethics (2001) describe the professional moral obligations to dignity, respect, responsibility to the patient and moral responsibility to self. Blinderman (2012) identified pain management as a specific obligation to fulfill over the refusal by a surrogate. According to the 2012 ANA position statement on nursing care and do not resuscitate and natural death decisions, “nurses have an ethical obligation to support patients in their choices, and, when needed, support surrogate decision-makers when they make decisions on patient’s behalf, when the decisions of the patient/surrogate do not violate the principle of nonmaleficence.” Non-maleficence, or preventing harm, is a key obligation for nursing and medicine regardless of surrogate influence in patient care. Providing basic care prevents known harm to the patient. Interestingly, there may be a lack of knowledge by clinicians related to evidencebased standards for basic care. This knowledge lapse related to the rationale for general hygiene, mouth care, active and passive range of motion, mobility and wound care may influence clinicians to lack recognition of the negative outcomes from failure to provide standard of care. For instance, the Lippincott Manual of Nursing Practice (2010) specifies turning and repositioning every two hours in patients where there is no spontaneous movement “to prevent contractures, stimulate circulation and prevent pressure sores, prevent thrombophlebitis and pulmonary embolism, promote lung expansion and prevent pneumonia, and decrease edema of the extremities. Changing position from lying to sitting several times per day can help prevent changes in the cardiovascular system—known as deconditioning.” This lack of knowledge may then lead to an error in judgment, the clinician unfortunately agrees to the surrogate’s refusal without considering the (un)known risks of deconditioning, sepsis, pneumonia, etc. The decision to acquiesce to the surrogate’s refusal may impact patient outcomes, perhaps increase length of stay.

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Deferring to the surrogate even when clinicians are morally uncomfortable is out of a misunderstanding of the role of the surrogate and the clinician obligation to the patient over the surrogate. The clinician is obligated to monitor the decisions of the surrogate in oversight. When the surrogate needs coaching on their role, the clinician is obligated to provide it and call into question decisions that are not for the good of the patient.

15.9

Fear of Conflict

When “shared decision making” becomes more oppositional, the clinician may infer an obligation to negotiate with the surrogate for permission to provide care. In offering medical expertise the clinician may be confronted by the authority of the surrogate as caregiver. The surrogate caregiver may accept some expertise but deny others. The clinician negotiates with best effort but is motivated to maintain the relationship at all costs avoiding conflict. The clinician preserves the trust of the surrogate as a best outcome for the patient. Over time, this negotiation infringes on the clinician’s own moral agency in order to please the surrogate and hopefully the patient. Should conflict with the surrogate develop, this may lead to a fear of liability and further acquiescing to the surrogate’s stance on the care for the patient. Best practice may include the clinical administrator’s role in resolution of conflict. Administrators have an important role in support for both the clinical team as well as the patient in their care as a patient in their facility. Health organization’s administrators are an important resource for the clinicians to provide needed support when the surrogate is not able to be coached, and before legal intervention as the next line of action.

15.10

Fear of Interrupting the Surrogate’s Relationship to the Patient

The clinician may be empowered to act through beneficence for the good of the patient and interrupt the refusals by the surrogate. The use of risk management or legal counsel may assert a breach in the surrogate’s relationship with the patient. The patient may be removed by legal means from the caregiver/surrogate to provide a safer relationship through other family member as surrogate or formal guardianship. Clinicians may hesitate to make such an intentional breach in this caregiver relationship. This fear may be so great as to cause the clinician to continue to try to negotiate care well beyond risk to actual patient harm.

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Ethical Resolution of Clinical Cases

The resolution of Case 1 included a discussion with the surrogate and clinical team on the differences between the usual moaning and this moaning with active source of pain. Further, the surrogate refusal to have the patient turned and repositioned was also addressed administratively after some unresolved family meetings with the clinical team. Repositioning was required to relieve pressure to the current wound and as an intervention to limit further pressure ulcers. The misplaced deference to the surrogate over what was indicated care for the patient by the clinical team was an unexpected finding by the ethics consultant. In the second case, the cultural experience of pain was influencing the surrogate’s decision to refuse pain management. Western pain management is not available in their home country and thus the surrogate refused treatment along these lines. In previous admissions, however, the patient had consented to pain management. Therefore, our obligation to treat was clear not only from moral, professional and principled standpoint but the patient’s substituted judgment was also evident. The lack of wound care was causing harm to the patient as well as inhibiting the healing of the wounds. Administrative intervention with the family influenced their response and other family was appointed to make decisions on behalf of the patient. The role of the ethics consultant in these two cases included a primary survey of the stakeholders’ perspectives with a clarification of the role of surrogate decision makers. In both cases the surrogates failed to express the wishes of the patient and focused on their own interest in the refusal. The surrogates failed to see the harms to the patient creating the impasse. Further, the ethics consultant provided ethical foundation and support directly addressing the obligations of the clinicians with respect to the refusal as well as evaluating the risk of harm in it. Ethics consultants may help coach, as in these cases, the clinicians in their role, and provide education to the surrogates thus facilitating an ethical resolution (ASBH 2010). Refusal of basic care puts perceived autonomy of decision making at odds with principles of beneficence, non-maleficence, justice and dignity. Autonomy as a principle is based on respect for persons (Beauchamp and Childress 2019). No respect should be provided to an autonomous position asserted with intent to harm or extend suffering of others. It is unlikely that substituted judgment would be based on previous wishes of the patient to refuse pain management, hygiene, repositioning, etc.. By hindering care for the patient, the surrogate may create an impasse when faced with the evidenced based obligations or standards of healthcare owed to the patient by the clinical staff. Clinicians are obligated to a duty to care, to provide expertise in a caring compassionate manner. Applying healthcare values of veracity, fidelity and courage and will help to clarify their expert professional response to care for the basic needs of the patient. The ethical resolution is clearly to provide basic care to protect the patient from harm and suffering. Shared decision making must focus on the patient as the center of the decision, even when the extent of harm is unclear. The delay of hygiene, or

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delay of wound care in itself may not immediately cause harm or suffering, but, in time, could be an important contributing cause of eventual harm. Thus, when in doubt, the clinicians should consider the application of the harm principle. When the refusal of basic care is asserted by a surrogate and when there is a difference of opinion the clinician may acquiesce to the surrogate, up until the point of harm or strong likelihood of harm.

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Conclusion

Refusal of basic care by surrogate decision makers creates a complex unexpected ethical conflict. Shared decision making is focused on the patient’s good through substituted judgment. Refusal of basic care is inconsistent with curative and palliative care goals. Clinicians should consider the implications of the specific refusal, address underlying motivations of the surrogate and coach the surrogate in their role and obligations. Clinicians should not defer to the surrogate’s either passive or active decisions that may cause harm. Clinicians who acquiesce to basic care refusals risk clinical neglect. There is no need for coercive persuasion of surrogates, their surrogate role obligations are clear. Surrogates who do not perform their role with respect to the patient and persist with refusal, may need administrative or legal intervention sought by the clinical staff. Ethics consultation may be helpful to clarify context and surrogate’s role and offer facilitation in third party involvement.

References American Hospital Association. 2003. Patient Care Partnership. https://www.aha.org/system/ files/2018-01/aha-patient-care-partnership.pdf. American Medical Association. 2001. Principles of Medical Ethics. https://www.ama-assn.org/ about/publications-newsletters/ama-principles-medical-ethics. American Medical Association. 2016. Opinion 2.1.2, 2-3 Decisions for Adult Patients Who Lack Capacity. Code of Medical Ethics. https://www.ama-assn.org/sites/default/files/media-browser/ code-of-medical-ethics-chapter-2.pdf. Accessed 24 Feb 2022. American Nurses Association. Ethics Advisory Board, March 12, 2012. ANA Position Statement: Nursing Care and Do Not Resuscitate (DNR) and Allow Natural Death (AND) Decisions. ———. 2015. Code of Ethics for Nurses. https://www.nursingworld.org/coe-view-only. American Society for Bioethics and Humanities, Society for Health and Human Values-Society for Bioethics Consultation Task Force on Standards for Bioethics Consultation, and Society for Bioethics Consultation. 2010. Core Competencies for Health Care Ethics Consultation: The Report of the American Society for Bioethics and Humanities. Glenview, IL: ASBH, American Society for Bioethics and Humanities. Beauchamp, T.L., and J.F. Childress. 2019. Respect for Autonomy. Principles of Biomedical Ethics. 8th ed. New York Oxford University Press. Blinderman, C. 2012. Do Surrogates Have a Right to Refuse Pain Medications for Incompetent Patients? Journal of Pain and Symptom Management 43 (2): 299–305.

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Hospital-Acquired Conditions. Centers for Medicare & Medicaid Services. August 19, 2015. Accessed 15 Feb 2020. https://www.cms.gov/medicare/medicare-fee-for-service-payment/ hospitalacqcond/hospital-acquired_conditions.html. In Re Quinlan: One Court’s Answer To The Problem of Death With Dignity, 34 Washington and Lee Law Review 285 (1977). https://scholarlycommons.law.wlu.edu/wlulr/vol34/iss1/15. Lippincott Manual of Nursing Practice. 2010. Lippincott Williams & Wilkins: Philadelphia. Mathes, M., and J. Reifsnyder. 2014. Nurse’s Law: Legal Questions & Answers for the Practicing Nurse. Indianapolis, IN: Sigma Theta Tau International. Pellegrino, E., and D. Thomasma. 1988. For the Patient’s Good: The Restoration of Beneficence in Healthcare. Oxford University Press. Reader, T.W., and A. Gillespie. 2013. Patient Neglect in Healthcare Institutions: A Systematic Review and Conceptual Model. BMC Health Serv Res 13: 156. https://doi.org/10.1186/14726963-13-156.

Chapter 16

Families Who Micromanage: “Please Come Help Us with This Family – They Are Micromanaging Everything!” Patricia A. Mayer

Abstract In this chapter, the author describes a phenomenon well-known to healthcare professionals and clinical ethics consultants but which has not yet resulted in a significant literature, namely the “micromanaging family.” Such families try to exert a high degree of control over clinical and technical matters and procedures that are entailed by the treatment goals to which they have seemingly agreed. This stance makes caring for the patient time consuming and exhausting for the healthcare professionals. The author suggests that the goal of appropriate medical care is paramount, and caregivers must seek to develop working relationships with the family that facilitate achieving this goal. Strategies such as commonly expressing compassion and sympathy for the family can further collaboration. Practical strategies and processes to follow should such situations prove intractable are also reviewed. Keywords Conflict · Micromanage · Surrogate decision · Intractable · Boundaries · Strategies · Clinical ethics

16.1

Objectives

1. Consider underlying reasons for micromanaging behavior. 2. Offer a range of mitigation strategies for providers. 3. Assist providers in developing processes for “intractable” situations.

P. A. Mayer (*) Clinical Ethics, Banner Health, Phoenix, AZ, USA e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_16

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Case 1

A 58-year-old man with Down Syndrome was admitted with recurrent aspiration pneumonia and sepsis. Although he lives with his 82-year-old mother who is his designated Medical Power of Attorney (MPOA) and a hired caregiver, he has spent most of the last 8 months in hospitals. He has a tracheostomy, primarily for airway protection, and is fed through a gastrostomy tube. He has had significant weight loss, is now non-verbal, and appears to be nearing the end of his life. His mother will not consider placing him in a facility; yet when he is discharged home, she calls 911 within a day or two to have him readmitted. When he is hospitalized she rarely leaves; is involved in every aspect of care; and refuses to consider end of life (EOL) as a possibility. The mother reports (undocumented) allergies to multiple medications – 18 at last count – thus severely limiting options. She often demands specific medications, some when medically contraindicated. She wants to approve every medication and frequently refuses permission for medications and treatments in ways that appear arbitrary and sometimes dangerous to staff.

16.3

Case 2

A 69-year-old man was admitted to the Intensive Care Unit (ICU) and intubated. He has an underlying incurable brain tumor that has failed prior therapies. Oncology was consulted for possible life extending treatments, including an experimental medication and radiation. His family includes a wife, son, and three daughters. Although the wife was the officially designated MPOA, she consistently defers to the son in all matters medical. Early in the admission, the son made it clear his father’s condition was due to “incompetent medical care”, with the respiratory failure a result of “not being turned on the left side” when first admitted. The son had no formal medical training but referred to himself as an “expert - now I have to be since the doctors are incompetent.” His hypotheses regarding his father’s conditions were not consistent with accepted medical knowledge, and his proposed treatments were inconsistent with evidence-based medicine. The family members tracked and questioned each medication, therapy, and treatment. They wanted to be actively involved in decisions such as choice of antibiotic, flow rate of hydration, number of radiation treatments, and choice of ICU mattress. At least one family member was in the ICU room at all times “so you don’t kill him“. They stated: “We came here for a cure and will be discussing only that.” How might a team effectively address micromanagement of patient care? “Micromanagement” refers to repeated family involvement in technical decisions and patient assessments sometimes including diagnosis and prognosis in ways that

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interfere with doing what is really best for the patient. (Dubler and Liebman 2011) The constant challenging of healthcare provider judgment and competence regarding technical matters causes a great deal of distress and can lead to overall deterioration in relationships. (Wilson et al. 2019) The resulting environment can adversely affect patient care. This chapter offers an understanding of micromanaging along with ways to mitigate such behavior. The goal is to develop working relationships while being clear that the primary obligation is to provide appropriate medical care to the patient. Teams must lead with compassion, sympathy and collaboration (Back et al. 2009) while understanding options if that approach fails. Plans and processes to use with intractable situations are discussed. The focus of this chapter is on micromanagers of adult patients who lack decision-making capacity.

16.4

Ethical Issues

Clinical decision making for a patient proceeds according to the established principles of respect for patient autonomy, beneficence, and nonmaleficence. Through shared decision making, the medical team and the patient (or the appropriate surrogate decision maker for a patient who lacks decision-making capacity), should arrive at a plan of care that accords with the patient’s wishes and values and is executed in accordance with recognized professional standards. This usually entails that patients and their surrogates are the most important voices in deciding the goals of care, e.g., life-extension or comfort, and the healthcare team generally selects treatments that are conducive to the goals. Of course, these role demarcations are somewhat porous, for instance, when a patient or surrogate notes that a treatment is particularly noxious and seeks and alternative or when a physician notes that a goal may be impossible. As illustrated in the above cases, micromanaging families often seem to defy the role of the medical team’s expertise and develop their own hypotheses about etiologies and diagnoses. They also make treatment requests or choices that do not align with recognized standards of care. Thus, the healthcare team’s ability to deliver quality care can be impeded, and they may be compromised in their duties of beneficence and nonmaleficence to the patient. In sum, the ethical issue is how to devise a method of interaction that respects the role of the patient or surrogate to make decisions in accord with the patient’s values and enables the healthcare team to deliver quality care that is not undermined by practices that have no evidentiary basis.

16.5

Homework First

It is essential for the ethicist to obtain an understanding of the medical, social, and family situation.

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The primary medical facts should be understood: What are the diagnoses? What is the likely prognosis? What are the available therapies? What are the patient’s goals and values? Providers (physician, nurse, respiratory therapist, dietician, et al.) should always be approached directly in order to understand the details and nuances of the case. The information contained in the electronic medical record (EMR) routinely needs to be fleshed out. Although the ethics consultant does not need to understand all medical details, an ethicist without a grasp of the overall medical situation will rapidly lose credibility with families and treatment teams. The views of the micromanager within the social context must be understood. It is essential to try and grasp what this person wants to know and accomplish . . . and why. Reasons may be myriad and complex, or they may simply remain opaque. They can include general distrust of the medical system; bad prior experiences; need for control; reliance on unfiltered information obtained from the internet and elsewhere; unresolved family issues; mental illness; grief; pre-death bereavement; anxiety; and a multitude of other possibilities. It is easier to develop an appropriate response when the reason for the micromanaging is understood. For instance, an extremely anxious micromanager who repeatedly calls a nurse to the bedside because: “Dad’s breathing sounds funny” would be approached differently than a compulsive one whose main focus is on the lab results because: “something was missed in the labs in the past.” Explanation and reassurance may be of most value to the former whereas a direct question, “Can you help me understand how this information will be most helpful to you?” may help to manage the latter’s concerns.

16.6

Identification of the Involved Parties

It is never difficult to identify the micromanager. But the MPOA/surrogate must also be identified, whether or not that person is the micromanager. Understanding the role of the micromanager relative to the patient and by what means and how much that person influences the MPOA/surrogate is essential. This distinction will guide the team in what sorts of efforts to make regarding the micromanager. Knowing who influences whom and how can be greatly useful to the process. Bedside staff usually have the most insight into these matters.

16.7

Determining the Influence of the Micromanager

Sometimes micromanaging is simply an annoyance. If the micromanager is present briefly or is not significant to the decision making, it may be better to simply take a sympathetic, patient approach. The team will have to decide whether the micromanaging is significant enough to require a coordinated approach. If the micromanager is constantly present or is the surrogate decision maker, proceeding with a more formalized approach is most effective. This approach

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involves a team meeting followed by conversations with the micromanager and good follow-up. Additional steps can include setting boundaries and/or “nuclear options”. A skilled ethicist – as a neutral party – is a good choice to coordinate and lead such efforts.

16.8

Team Meeting

The goal of a care team meeting is to clarify issues and decide on an approach to the micromanager. Since such a gathering takes time, the ethicist should remind teams that a coordinated approach saves time in the long run. The approach should always lead with compassion. Team members must keep their “eyes on the prize,” i.e. the delivery of excellent patient care. Reminding team members to be “the grownups in the room” when dealing with a micromanager is very useful. “This micromanager appears stressed/worried/ fearful/ frightened/grief- stricken/etc. Our goal is to form an alliance and maintain a working relationship within the bounds of good patient care and safety. We are here to plan a coordinated, consistent approach.” Staff tolerate a micromanager better with clear guidelines and support from their managers. Staff should be counseled to avoid interpreting the remarks of the micromanager as personal insults. They can be advised instead to name the emotion seen, such as “she appears frightened. . .”. Reframing can help staff perceive the situation from the micromanager’s point of view. In the unusual case, when only one team member is targeted, it can be helpful to reassign that team member. This change should be done cautiously, however, as most micromanagers do not target a single individual. Repeated replacement of team members can wreak havoc on schedules, as well as sending the wrong message to the micromanager. In addition, staff should be counseled to use neutral verbal and body language when interacting with the micromanager. Although it is human to resort to snide or passive-aggressive language when repeatedly challenged, such responses will only result in a power struggle. Everybody loses, especially the patient, when a power struggle occurs. The goal cannot be “thwarting the micromanager.” The object is to enhance patient care. Most micromanagers care deeply about the patient. They are not specifically trying to interfere with staff. Keeping in mind that a micromanager is focused on helping the patient and considers their actions essential for patient welfare should help staff to maintain a sympathetic attitude.

16.9

Reaching Team Decisions

The ethicist can begin asking the team which actions from the micromanager are tolerable (even if difficult); which would be acceptable (if modified); and which are unacceptable. These distinctions give the team a starting point for decisions. If the

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micromanager’s actions do not interfere with staff or patient care but are simply annoying, a sympathetic, tolerant approach may be all that is needed. For behavior that can be accepted if modified, the team should develop legitimate options to help the micromanager gain some control and feel part of the team. Compromise should be encouraged whenever possible, as it builds trust and rapport. For example, perhaps the team is aware that the benign lotion the micromanager wants the staff to apply to the patient’s feet will not mitigate discoloration caused by vascular insufficiency. Rather than: “That lotion is useless and can’t possibly help,” try, “Although we have no evidence that will help, there is no harm in applying it as it has no side effects.” Such an action would have the benefit of enhancing the micromanager’s sense of involvement in the care. The team must also identify behaviors which cannot be tolerated, especially physical threats and verbal abuse. Unacceptable behaviors might also include demands for therapies, tests or procedures that are not medically indicated, without benefit, or harmful or demands to withhold needed therapies (such as pain medication) or treatments (e.g. removal of an infected port).

16.10

Approaching the Micromanager

Once the team distinguishes tolerable, acceptable (with modifications), and unacceptable behaviors, the ethicist can coach or assist a conversation with the micromanager. Sometimes, this can be an informal chat. “We note that you have concerns about receiving the lab results. We’d like to hear your concerns.” For a more formal meeting, the ethicist can help identify attendees to invite such as the attending physician, social worker, and nurse. Bedside nurses can usually identify others who are closely involved with patient care or who have a special relationship with the micromanager. It is important that someone consistently available on the unit (such as a nurse manager) is present who can later transmit information to daily caregivers. The attending physician should be aware and supportive of the approach even if unable to attend. The surrogate/MPOA (if that person is not the micromanager) must be present (at least by phone). It is also helpful to ask a surrogate/MPOA micromanager who else should attend. Others who could have a calming effect on the meeting atmosphere should also be invited. Goals must be clear to the team prior to the meeting. In addition to giving voice to the micromanager, will the team ask for behavior modifications? Point out unacceptable behaviors? Set limits/boundaries? Or is a “nuclear option” needed?

16.11

Conducting a Formal Meeting

An agenda should be followed to keep the conversation on track. The meeting must have a clear leader, and sometimes a time limit needs to be set at the beginning. Every person in the room should be introduced by name and role. The purpose of the

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meeting must be stated in patient care terms: “The purpose of this meeting is to understand concerns and create a plan going forward so we can better care for the patient.” A usual start consists of hearing the micromanager’s understanding of the patient’s medical situation followed by a short medical update. This approach allows the team to correct any gross inaccuracies (e.g. “actually, no cancer has been found”) and answer questions. The team should not address every complaint or insult. “Eyes on the prize” means this meeting is about improving patient care, not “settling scores.” After the micromanager has been heard and questions answered, the meeting leader can explain what behavior is and is not acceptable, what behavior must be modified (with the choices available), and propose a plan, always couched in terms of patient care. Again, teams should compromise as much as is safely and reasonably possible and try to align micromanager concerns with patient needs. By the end of the meeting there should be a list of agreements – similar to oft-used behavior contracts. The list need not be long, but it should be specific and cover the major points of contention. Having a written list adds clarity. And sometimes the leader will have to stop the family from endless arguments: “We are not offering surgery.”

16.12

Specific Agreements

Compromises to modify behavior might include offering daily briefings to a micromanager who insists on the physician being called multiple times a day. A micromanager who reliably connects daily with a physician is often less anxious and demanding. Other strategies can include explanations regarding the reasons certain behaviors are not acceptable (citing the impact on patient care) or clarification of the role of the MPOA (to help us understand what the patient would want). Posting written agreements in the room can be very powerful “so all of us will remember it.” An example might be stipulations to provide: (1) A daily medical update with the doctor for about X minutes (2) A computer-generated list of medications ordered to be available once a day and (3) A daily report of the morning hemoglobin. Identification of a primary caregiver to interface with the micromanager is key. In a complicated hospital environment with multiple consult services, having information go through one person is essential.

16.13

Boundaries

Unfortunately, sometimes even excellent communication and compassionate responses to a micromanager fail, and boundaries must be added to protect the patient and staff. In such cases, boundaries must be set in clear and simple language, again always couched in terms of patient care. It’s preferable to lead with what can be done instead of with what cannot be done. Some examples: “We must treat pain

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for patient comfort but will give just enough pain medications to keep the patient comfortable.” “For the comfort of other patients, you must leave the facility to have heated family discussions as we cannot allow disruptions in the hall.” If boundaries are required, they should be part of the posted list and phrased in positive or neutral language. “We welcome two visitors in the room” is preferable to “No more than two visitors allowed at any time!!”

16.14

“Nuclear Options”

There are times when all the above strategies, even in the most skilled hands, will fail. In those rare cases, so-called “nuclear options” must be considered. Ethicists use these reluctantly, as a last resort, knowing they usually destroy any remaining relationship with the micromanager. The risk management and/or legal department will ordinarily be involved at this stage both for advice and to ensure compliance with state and local law as well as facility policies and procedures. These options include refusals (“We will not order that test/medication”); recognizing an intractable conflict (“We cannot adequately care for the patient with your restrictions”); presenting a package deal (“We are offering this treatment plan as a package. You may not pick and choose elements because it all works together”); making unilateral decisions when legal and consistent with hospital policy (“We are not offering CPR in the event of an arrest”); pointing out other obligations (“For the benefit of all patients and visitors in this facility we must require you do not raise your voice”); and offering a transfer option (“If you find our treatment program unacceptable you may transfer to another facility”). If patient or staff safety is an issue, security should be involved.

16.15

What Happened in Our Vignettes?

In the first vignette a nurse manager volunteered to act as a liaison. The mother was offered (and accepted) a medical update by the attending physician daily, followed by the nurse manager checking with her throughout the day. Boundaries were set regarding what the team was and was not going to offer and agreements were posted in the room. Not only did the mother abide by the agreements, she expressed deep appreciation to the staff for her son’s care. In the second case all efforts ultimately failed. Nuclear options were eventually implemented, including a unilateral DNR based on futility; refusal to administer medication the family demanded; and security on standby for medical briefings with the family. The family attempted transfer, but no facility would accept. After being hospitalized for nearly a month, the patient was discharged to a long-term acute care facility and, within 24 h, his family demanded return to a different acute care hospital.

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Although rare, this second vignette is included to illustrate that even a talented team and ethicist cannot fix every problem. But they can always help lay out an ethical, compassionate path forward.

References Back, A., R. Arnold, and J.A. Tulsky. 2009. Mastering Communication with Seriously Ill Patients: Balancing Hope and Empathy. Cambridge, MA: Cambridge University Press. Dubler, Nancy N., and Carol B. Liebman. 2011. Bioethics Mediation: A Guide to Shaping Shared Solutions. Revised and Expanded ed. Nashville: Vanderbilt University Press. Wilson, M.E., C.C. Dobler, L. Zubek, O. Gajic, et al. 2019. Prevalence of Disagreement About Appropriateness of Treatment Between ICU Patients/Surrogates and Clinicians. CHEST 155 (6): 1140–1147.

Part III

Introduction to Part III: Persistent and Thorny Clinical Ethical Issues

In this part the authors address persistent thorny issues in healthcare, namely neuroethics, brain death, end-of-life and futility, assisted suicide/aid in dying, and challenges regarding surrogate decision making. These topics were selected because of their consistent presence in ethics consultation even as some of the specific clinical dilemmas have evolved over time. They will be readily recognized by those doing clinical ethics consultation who may have had similar cases or been approached by their institutions about the moral dilemmas they entail. Each issue is addressed by authors from at least two countries. The authors describe the ethical issues and analyze the competing values and moral perspectives which contribute to the dilemma in practice and offer practical guidance for ethics consultants to help approach and resolve these conflicts. Neuroethical dilemmas are addressed by Sharon Feldman, Paul Ford and Lauren Sankary who critique the limits of traditional informed consent frameworks and neuroessentalism for patients who are cognitively vulnerable. They offer practical tools and shared decision-making models for ethics consultants. Sok Lee and Ariane Lewis examine the ongoing ethical issues surrounding brain death/death by neurological criteria and the growing rejection of these definitions by surrogate decision makers and healthcare professionals. They explore the role that the ethics consultant can play in preventing and mitigating conflicts in this arena. Addressing end-of-life dilemmas from a different perspective, Christoph Mandry argues that determinations of medical “futility” always contain value judgments. Ongoing ethical issues arise when physicians no longer want to offer treatments to a seriously ill patient while the patient’s representatives do not want to give up hope. A 7-step process for addressing such conflicts involving the clinical ethics consultant is presented. The next three chapters focus on the persistent issue of Assisted Suicide or Aid in Dying. Each chapter reflects the language and terms of art in the specific setting. First, Felicia Cohn addresses Physician Aid in Dying (PAD) in the US describing commonalities and differences between states. She analyzes the ongoing ethical issues of patient capacity, voluntariness, physician obligations, definitions of suicide versus aid in dying, alternatives and barriers as well as the challenges for an ethics consultant in these cases. Second, Benjamin Zolf and Udo Schuklenk discuss the

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landscape of Medical Aid in Dying (MAiD) in Canada noting that the legal and regulatory landscape is not fixed but shifting. They address the impact of MAiD on healthcare professionals including the consequence of conscientious refusals to assist such requests as well as the role of the ethics consultant. Third, Charlotte Wetterauer and Stella Reiter-Theil describe the variety of approaches to Aid in Dying in Europe, including Physician Assisted Suicide and Euthanasia focusing on the unique position taken in Switzerland. Ethical issues in pediatrics are another long-standing source of ethics consultations. Micah Hester discusses how pediatric ethics differs from adult-care ethics in the US, the role of parental authority for pediatric decision making and identifies ethical concerns across the lifespan of minors. Helen Turnham and Dominic Wilkinson tackle this topic in the large and differing European context noting commonalities in how the best interests of the child are determined across countries. They offer an analysis of European approaches to end-of-life disagreements for minors, specifically refusals of life-sustaining treatment, as well as the contributions ethics consultants can offer to these dilemmas and their potential resolution. The final two chapters in this part address the thorny issues that arise around surrogates and their decisions on behalf of patients. Hilary Mabel, Sharon Feldman and Margot Eves offer three distinct categories, i.e. True Contradiction, Partial Picture Bias, and Internal Contradiction, to understand when surrogates appear to contradict the patient’s wishes. The authors include ways the ethics consultant can support stakeholders to honor the patient’s wishes within each category. Finally, Katarina Lee-Ameduri addresses ethical issues regarding surrogate decision makers and decisions around potentially non-beneficial care in Canada, specifically initiation or withdrawal of life-sustaining treatment. By accessing multiple perspectives on each persistent thorny issue in healthcare and clinical ethics, the reader can critically reflect on the underlying values and sources of conflict or moral unease which often give rise to ethics consultation requests. These chapters provide an opportunity to learn from the experience and insights of the authors in different countries and explore potential approaches to resolving such dilemmas in practice.

Chapter 17

Neuroethics in the Clinic: Amplifying Patient Perspectives Through Enhanced Decision-Making Frameworks Sharon L. Feldman, Paul J. Ford, and Lauren R. Sankary

Abstract A persistent ethical challenge in medical decision making is how to balance the protection of cognitively vulnerable patients with respect for their individual values and bodily integrity. In this chapter, practicing neuroethicists share their unique perspective and approaches to navigating this dilemma via two case studies. The thorny neuroethics cases described reveal the limits of traditional informed consent frameworks that are often relied upon to strike the balance between protection and respect for individual preferences. The first case illustrates the inadequacy of binary assessments of decision-making capacity, unjustifiably limiting patient participation in care. The second case highlights how neuroessentialist biases can creep into medical decision making, unjustifiably restricting treatment options for patients who do not share that neuroessentialist viewpoint. Regularly being immersed with the uncertainties and complexities inherent to the neurodomain pushes neuroethicists to challenge traditional frameworks that have great general utility, but also have limits. In this chapter, practical tools employed in neuroethics practice are offered to amplify patient perspectives and maximize patient participation in medical decision making across clinical areas. The cases presented may lack the drama or urgency of many consults that reach the pager of clinical ethicists in acute care settings. However, they bring into relief concerning aspects of medical decision making that deserve attention. Keywords Clinical ethics · Neuroethics · Shared decision making · Capacity · Informed consent

S. L. Feldman (*) Department of Pediatrics, University of Melbourne, Melbourne, Australia e-mail: [email protected] P. J. Ford · L. R. Sankary Neuroethics Program, Cleveland Clinic, Cleveland, OH, USA © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_17

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Objectives

1. Explore how to balance the protection of cognitively vulnerable patients with respect for their individual values and bodily integrity in medical decision making. 2. Describe how specialized ethics consultation involving neurodivergent patient populations highlights the inadequacy of the binary between capacity and incapacity in medical decision-making models. 3. Explain how approaches in neuroethics can enhance shared medical decisionmaking models and call into question neuroessentialist notions across clinical areas.

17.2

Case One

A neuroethics consult was requested to support a patient’s decision making during her inpatient diagnostic admission for an unspecified grey matter disease. Ms. Bartlet, who was middle-aged, was contemplating invasive diagnostic procedures, including a biopsy of affected brain tissue. Her plan of care was filled with contingencies. The proposed biopsy – one of many diagnostic procedures – would inform the treatment options that might become available. Ms. Bartlet was described by the medical team, who suspected she did not have the capacity to make her own medical decisions, as “disorganized and confused” in her thinking. She had cognitive deficits and language impairment from the grey matter disease that was also thought to be connected to her other physical symptoms. Complicating this picture was her uncle’s insistence that her symptoms were caused by a fungal infection in her brain, and that she did not require conventional medical treatment. The patient lived with this uncle, who was often present at bedside or repeatedly attempting to contact Ms. Bartlet by phone.

17.3

Case Two

A second neuroethics consult involved a 70-year-old patient, Mr. Ziegler, with a long-standing diagnosis of idiopathic Parkinson disease. Mr. Ziegler’s neuropsychological assessment showed significant cognitive deficits, although he did not meet criteria for dementia. He was approved for bilateral deep brain stimulation (DBS) targeting the globus pallidus interna (a brain structure involved in the regulation of voluntary movement). A neuroethics consultant was embedded in the DBS multidisciplinary patient management conference during which Mr. Ziegler’s candidacy for DBS was considered (Abboud et al. 2014; Ford and Kubu 2006). DBS was expected to address motor symptoms of Mr. Ziegler’s Parkinson disease, including his bilateral hand tremor, rigidity, and balance issues. However, the

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multidisciplinary group was concerned that due to his preexisting cognitive impairments, he was at higher than average risk of cognitive decline following surgery. Expressing some reservations about initiating DBS in these circumstances, the team placed an outpatient neuroethics consult.

17.4

Introducing Clinical Neuroethics

Uncertainty is inherent in medicine. Even as some uncertainties are clarified, more are created through the discovery of new territories of knowledge and errors in previous ways of understanding (Fox 2000, 409). In no medical subfield is this more germane than in the neuropsychiatric specialties. The brain is often described as “one of the last frontiers of science, a terra incognita” (Racine 2010, 2). Its scale of complexity–with billions of neurons interacting with one another and with external stimuli to produce emotions, behaviors, and thoughts–continues to outpace our computing power and theoretical frameworks. Despite this overwhelming complexity, neuroscience constantly reaches new heights of progress in mapping brain function and devising new therapies. In response to these advances, and the clinical and philosophical uncertainties that accompany them, the field of clinical neuroethics has emerged. Clinical neuroethics, as distinct from research neuroethics or theoretical neuroethics, addresses the ethical challenges in the delivery of healthcare to patients with neurological and psychiatric disorders (Racine 2010, 4–6). The authors of this chapter engage in this work as ethicists embedded in the neurological institute of an academic medical center. In this role, the authors attend multidisciplinary patient management conferences at which candidacy is determined for elective neurosurgical procedures. They also provide outpatient or pre-surgical ethics consults with select patients when ethical challenges are identified by clinicians during pre-surgical evaluations. A focal and persistent ethical challenge in the authors’ clinical neuroethics practice is how to balance the protection of patients who may be cognitively vulnerable with respect for their individual values and bodily integrity in medical decision making. This is a challenge in clinical ethics more broadly. However, there are a number of complicating factors specific to a neurodivergent patient population (i.e. those whose neurological makeup is considered non-typical) that provide neuroethicists with a unique perspective on this issue. First, decision-making capacity assessments can be particularly challenging in this patient population because of neurological and psychiatric conditions that impact or mask—without eliminating— decision-making abilities (Racine 2010, 6). Second, given the limits to our understanding of brain function, medical decisions in this area are further complicated by diagnostic and prognostic uncertainties. Finally, neuroessentialist notions that individuals are defined by their neurocognitive function often creep into medical judgments in this area, in some cases unjustifiably limiting treatment options. These

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elements combine to create situations that deserve particularly careful consideration, and that foster nuanced approaches. The case studies introduced above explore the ways in which clinical neuroethics seeks to strike a balance between protection and respect in the face of this persistent dilemma. The first case highlights the inadequacy of binary capacity evaluations in determining the bounds of an individual’s right to participate in their own medical decision making. The second case challenges a neuroessentialist notion that commonly arises in counseling for elective neurosurgery. These cases are complicated by the diagnostic, prognostic, and philosophical uncertainties that define neuroscience and its related clinical specialties. In the face of these uncertainties, robust decisionmaking processes were devised and implemented by the consulting neuroethicist to amplify the voice of the patient. Regularly being immersed with the uncertainties and complexities inherent to the neuro-domain pushes neuroethicists to challenge traditional frameworks that have great general utility, but also have limits. Further, engaging with a neurodivergent patient population can enrich one’s perspective and challenge long-held assumptions. In this chapter, these approaches and perspectives are offered to the broader field of clinical ethics.

17.5

Case One: An Attempt to Liberate “Locked-In Capacity”

Current ethics thinking places decision-making capacity as the cornerstone of selfdetermination; the right to make medical decisions is reserved for those deemed to have the requisite skills for the task. This principle harkens back to Justice Cardozo’s well-known statement of the right to bodily integrity, which formed the basis of the doctrine of informed consent: “Every human being of adult years and sound mind has a right to determine what shall be done with [their] own body”. In theory, this may be an appropriate way to balance the values of protection of the vulnerable with respect for bodily integrity in the event of a conflict. However, in practice, binary capacity determinations — that deem patients either capacitated or wholly incapacitated to make a particular decision — lack the nuance required to maximize a patient’s participation in complex medical decision making. It is well-recognized that capacity should be assessed on a sliding scale; people with dementia or other cognitive anomalies may have the capacity to make some decisions, albeit not others. However, in clinical practice, binary determinations are still relied upon. The inadequacy of this binary is highlighted in case one, where a poorly understood disease process indiscriminately devastated some of Ms. Bartlet’s brain centers, leaving others perfectly intact. In speaking with Ms. Bartlet, she fully demonstrated three of the four elements of decision-making capacity defined by Appelbaum and Grisso (1988). While her thoughts were occasionally disorganized or disrupted by memory lapses or wordfinding difficulties, she expressed a detailed understanding of many aspects of her

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neurological condition. At times referencing hand-written notes, she described the way her symptoms affected her cognitively and emotionally, the proposed diagnostic procedures, and the treatment options available. She communicated an appreciation of the uncertainty surrounding her diagnosis and prognosis, and some of the risks and benefits of the proposed procedures. She could also articulate her goals: (1) to gain clarity on the cause of her symptoms; and (2) to preserve her cognition to the extent possible. Although caught in tangential thinking at times, she engaged in some reasoning as to how various treatment options aligned with her goals. However, her apparent capacity to engage in decision making was seemingly ‘locked-in’ to the extent that she could not, or would not, communicate a choice among the options available to her, the fourth and final element of decision-making capacity. While she continued to function reasonably well in many cognitive domains, there was some barrier to her expression of choices such that intervention was seemingly required to decode her capacity; in this sense, a parallel is drawn to patients with focal strokes who are ‘locked-in’ in terms of expressive communication. Further, she vacillated and resisted engaging with simple decision making that usually requires a lower threshold of capacity, such as designating which family members to involve in her healthcare. At times, she invited family members to be present for conversations with her medical team; at other times, she asked that the medical team not speak with those same family members. The primary medical team and clinical ethicists worried about potential coercion by her uncle, whom the patient described as overbearing and himself lacking decision-making capacity, while wanting to ensure Ms. Bartlet had every external support. Ms. Bartlet’s consistent failure to communicate a choice would have her classified as being without capacity if assessed on a binary basis. However, excluding her from participation in her treatment decisions would clearly be an injustice given her apparent ability and desire to engage in many elements of the decision-making process, and her interest in self-determination. To support Ms. Bartlet, the neuroethics consultants first sought to help her reach and communicate a decision by eliciting her priorities and values through active listening and extended discussion, and integrating information for her about how various treatment options might promote or undermine these values. When this failed, the neuroethicists offered to facilitate discussions between the patient and her family to support her in resolving the differences she reported in their opinions about her care. Although initially enthusiastic about this offer, she later cancelled multiple family meetings, forgetting she made this request and stating she saw no reason to involve her family in her medical care. Neuroethics also attempted to support the patient in completing healthcare power of attorney documentation. However, she continually expressed the need for more time to contemplate whom she would appoint. When months passed and Ms. Bartlet’s cognition had further declined, the neuroethics consultants supported the patient’s physician in a nuanced evaluation of strengths and gaps in her decision-making capacity as he provided a statement of expert evaluation when family applied for guardianship. The careful evaluation included multiple clinical interviews with Ms. Bartlet over an extended period, review of past medical chart notes, and further consultation with team members who had interacted with

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Ms. Bartlet, with a view to disentangling any surmountable psychosocial issues from cognitive constraints on Ms. Bartlet’s decision-making capacity. This thorny case is not a ‘success story.’ Despite many attempts, it was ultimately not feasible to implement a shared decision-making model that empowered Ms. Bartlet to maximally participate in her medical decisions. However, this case illustrates distinct challenges posed by variable and inconsistent demonstrations of decision-making capacity. Patients, such as Ms. Bartlet, may have discrete cognitive constraints that lock-in decision-making capabilities to the extent that they cannot demonstrate one of the requisite elements of capacity, despite a strong indication that they retain some (or all) of the relevant skills. When we are attentive to the nature of those constraints, we can sometimes unlock the decision-making capacity of patients by supplementing gaps with additional counseling and social supports. In other consults involving patients deemed to lack decision-making capacity in a binary sense, clinical neuroethicists have played a vital role in integrating information, preferences and reasoning provided by patients and their social supports to facilitate healthcare decisions centered on patient values and priorities.

17.6

Case Two: Challenging Neuroessentialism

In case two, Mr. Ziegler, who was joined by his wife for the neuroethics consult, demonstrated a rich understanding of the DBS device, the risks of implantation surgery, and its potential benefits. He described that he was hesitant to undergo DBS surgery when it was first suggested to him years earlier. Now faced with increasingly severe motor symptoms, his perspective had changed. Hopeful he could continue to perform minor repair work around the house, Mr. Ziegler’s goals in undergoing DBS were to improve his walking, posture, and motor skills. He recognized the significant risk that surgery would precipitate a decline in his cognitive function. He had already experienced cognitive changes related to his Parkinson disease, and had begun to take measures to manage these symptoms, such as note writing. He explained that the risk of cognitive decline was acceptable to him in exchange for the chance to continue the repair work he had valued performing throughout his life. Notably, a carbidopa/levodopa pump was an alternative advanced therapy available to address his motoric symptoms, which posed fewer cognitive risks. However, Mr. Ziegler explained that this alternative would not offer the same potential benefit since the externalized portion of the pump would hinder his ability to move through small spaces during his repair work. In the assessment of the neuroethics consultant, Mr. Ziegler’s decision to undergo DBS appeared consistent with his stated goals and long-term values. This assessment was bolstered by the perspective of his wife that “he’s never seemed happy when he wasn’t able to ‘tinker’ around the house”. This consult was colored by neuroessentialist notions that individuals are defined by their neurocognitive function. The multidisciplinary DBS team felt consternation about mitigating symptoms of a movement disorder in a manner that risked introducing a new diagnosis of dementia. The neuroethics consultant similarly felt some

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internal conflict in facilitating an informed consent process for this procedure. The ethicist worried that, ironically, in promoting Mr. Ziegler’s autonomous expression of his deeply-held values in this instance, his ability to participate in future medical decision making might be impaired. If this surgery did in fact cause cognitive decline, as his care team anticipated, he may be left without the capacity to participate in future decisions. Mr. Ziegler’s perspective was enlightening. Challenging the multidisciplinary team’s neuroessentialist assumptions, Mr. Ziegler and his wife clearly and consistently expressed that his identity was centered on preserving the motor function required for daily activities and hobbies. In the circumstances, it would have been an injustice to withhold the therapy most likely to preserve those functions. The neuroethics consult both revealed this perspective and ensured a robust informed consent process, confirming not only patient understanding of the risks and benefits of DBS, but also that this risk/benefit profile was aligned with his deeply-held values. For Mr. Ziegler, cognitive preservation was not an overriding value. By identifying and communicating Mr. Ziegler’s perspective, which was at odds with the neuroessentialist bias of the team (including the neuroethicist), this consult ensured his access to the treatment best-aligned with his values.

17.7

Takeaways for the Clinical Ethicist

The thorny neuroethics cases described reveal the limits of informed consent frameworks that are often relied upon in clinical settings. The first case illustrates the inadequacy of binary assessments of decision-making capacity and highlights opportunities for clinical ethicists to maximize a patient’s participation in their care. By identifying which aspects of decision-making capacity a patient retains through active listening and consideration of the source of cognitive constraints, attempts can be made to supplement relevant gaps and unlock preserved decision-making capacity. Tools for supplementation include the introduction of shared decisionmaking models, memory aids, and eliciting direct recommendations from the team that integrate the patient’s expressed wishes and values. The second case study highlights how an informed consent process can challenge underlying neuroessentialist biases to avoid unjustifiably restricting treatment options for patients who do not share that neuroessentialist viewpoint. By uncovering the patient’s perspective through an exploration of his functional goals and the daily activities he found most meaningful, the neuroethicist in this case ensured the patient’s access to the treatment best aligned with his values. By bringing value considerations into informed consent frameworks across care settings, clinical ethicists can challenge biases such as neuroessentialism in clinical judgments and amplify patient perspectives in medical decision making. These cases may lack the drama or urgency of many consults that reach the pager of clinical ethicists in acute care settings. However, they bring into relief concerning aspects of medical decision making that deserve the attention, and may benefit from the intervention, of clinical ethicists in all settings.

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References Abboud, Hesham, Raja Mehanna, Andre Machado, Anwar Ahmed, Michal Gostkowski, Scott Cooper, Ilia Itin, et al. 2014. Comprehensive, Multidisciplinary Deep Brain Stimulation Screening for Parkinson Patients: No Room for ‘Short Cuts’. Movement Disorders Clinical Practice 1 (4): 336–341. https://doi.org/10.1002/mdc3.12090. Appelbaum, P.S., and T. Grisso. 1988. Assessing Patients’ Capacities to Consent to Treatment. The New England Journal of Medicine 319 (25): 1635–1638. https://doi.org/10.1056/ NEJM198812223192504. Ford, P.J., and C.S. Kubu. 2006. Stimulating Debate: Ethics in a Multidisciplinary Functional Neurosurgery Committee. Journal of Medical Ethics 32 (2): 106–109. https://doi.org/10.1136/ jme.200X.013151. Fox, Renée C. 2000. Medical Uncertainty Revisited. In Handbook of Social Studies in Health and Medicine, ed. Gary Albrecht, Ray Fitzpatrick, and Susan Scrimshaw, 409–425. London: Sage Publications. Racine, Eric. 2010. Pragmatic Neuroethics: Improving Treatment and Understanding of the MindBrain. Cambridge, MA: MIT Press.

Chapter 18

Brain Death/Death by Neurological Criteria in the United States: What Every Clinical Ethics Consultant Should Know Sok Lee and Ariane Lewis

Abstract Brain death/death by neurological criteria (BD/DNC) has been recognized as the medical equivalent of death by cardiopulmonary criteria since the late 1960s. Despite this, there are still a number of controversial aspects of BD/DNC determination. Families sometimes object to BD/DNC and there have been several prominent highly publicized lawsuits about BD/DNC in recent years. Clinical ethics consultants play an important role in mediating these difficult situations. Here, we (1) review the medicolegal history of BD/DNC, including state-specific guidance on religious objections to BD/DNC; (2) discuss objections to BD/DNC by both surrogate decision makers and healthcare professionals; and (3) explore the role of clinical ethics consultants in preventing and mitigating conflict in the setting of objections to BD/DNC. Keywords End-of-life · Brain death · Death by neurologic criteria · Medicolegal · Surrogate · Consent · Objection

18.1

Objectives

1. Review the medicolegal history of brain death/death by neurological criteria (BD/DNC). 2. Discuss objections to BD/DNC by both surrogate decision makers and healthcare professionals. 3. Explore approaches to address and prevent these objections.

S. Lee · A. Lewis (*) Neurology, NYU Langone Medical Center, New York, NY, USA © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_18

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Case

In 2013, Jahi McMath, a 13-year-old girl from California, had a cardiopulmonary arrest after a tonsillectomy. Two physicians performed independent examinations which were consistent with BD/DNC. Her family refused to accept her death and filed a legal petition requesting the hospital continue treatment. It is unclear if a clinical ethics consultant was involved. The court appointed another physician to examine Jahi and he confirmed that she met criteria for BD/DNC. The court ruled that Jahi was legally dead, but ceded to the family’s request to have the rights to her body transferred from the hospital to her mother so she could facilitate a flight to New Jersey where determination of BD/DNC is precluded if a family voices religious objections. Organ support was continued until 2018 when she had a cardiopulmonary arrest (Ariane Lewis 2018b).

18.3

Medical History of BD/DNC

The development of ventilators allowed patients who previously would have had a cardiopulmonary arrest to be maintained. In this setting, it was noted that some comatose patients lacked brainstem reflexes and respiratory drive, a phenomenon described as BD/DNC (Mollaret and Goulon 1959). In 1968, an ad hoc committee at Harvard established a medical standard for BD/DNC (“A Definition of Irreversible Coma. Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death” 1968). Today, the accepted standards for BD/DNC that have been endorsed in the United States (US) by multiple medical associations are the 2010 practice parameters written by the American Academy of Neurology (AAN) on determination of BD/DNC in adults and the 2011 standard written by the Society of Critical Care Medicine, American Academy of Pediatrics, and Child Neurological Society on determination of BD/DNC in children (Lewis 2018a).

18.4

Legal History of BD/DNC

Despite formalization of the concept of BD/DNC for the medical community in the US, inconsistencies persisted in the legal definitions of death around the country (“Guidelines for the Determination of Death. Report of the Medical Consultants on the Diagnosis of Death to the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research” 1981). Recognizing this disparity, model legislation called the Uniform Determination of Death Act (UDDA) was proposed by the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research in 1981 (“Guidelines for the Determination of Death. Report of the Medical Consultants on the

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Diagnosis of Death to the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.” 1981). The UDDA defined an individual as dead if they sustained irreversible cessation of (1) circulatory and respiratory function or (2) all functions of the entire brain, including the brainstem. It also stated that a determination of death must be made in accordance with “accepted medical standards”. All 50 states subsequently came to accept BD/DNC as legal death (Lewis et al. 2017c). Four states provide legal guidance on management of religious objections to BD/DNC. New Jersey’s statute explicitly indicates religious objections to BD/DNC should prompt continuation of organ support until death by cardiopulmonary criteria (“New Jersey Brain Death Statute” 2014). New York and California require hospitals to make “reasonable accommodation” in the setting of religious objections to BD/DNC and Illinois requires hospitals to consider a patient’s religion when determining time of death (“New York State Guidelines for Determining Brain Death” 2011; Ca. Health & Saf. Code §1254.4; 210 Ill. Comp. Stat. §85/6.24). However, there have been lawsuits in multiple states addressing religious objections to BD/DNC (In Re: Mirranda Grace Lawson 2016; Alex Pierce v. Loma Linda University Medical Center 2016; Israel Stinson v. Children’s Hospital Los Angeles 2016; Lashauna Lowry as next friend of Titus Jermaine Cromer, Jr. v. Beaumont Health 2019). There have also been other legal controversies pertaining to the need for consent for determination of BD/DNC, the accepted standards for determination of BD/DNC, identification of time of death, and rights after BD/DNC (Lewis and Scheyer 2019; In Re: Allen Callaway 2016; In Re: Mirranda Grace Lawson 2016). To address these, and other, concerns with the legal aspects of death determination, it has been proposed that the UDDA should be revised (Lewis et al. 2020a).

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Reasons for Families to Object to BD/DNC

Clinical ethics consultants must be prepared to prevent and manage objections to BD/DNC as they can play a pivotal role in mitigating conflict. Using various practical approaches, an ethics consultant can achieve compromise and balance between the concerns of the family and treatment team. When a request for accommodation is made, an ethics consultant should seek to understand the reasons for the request. Objections may be temporary, such as in the case of a family wanting to wait for the arrival of other family members before discontinuation of organ support, or indefinite, due to religious beliefs (Flamm et al. 2014). People of varying religions have cited religious concerns when objecting to BD/DNC (Olick et al. 2009; Setta and Shemie 2015). Several religious leaders have made statements supporting BD/DNC (Segal 2014; Rady and Verheijde 2013; Olick et al. 2009), but there is ongoing disagreement among followers of any given faith (Lewis 2019; Lewis et al. 2020b). Because there may be varying religious views

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within a family, clinical ethics consultants should ascertain whether an objection is based on a patient’s values and religion, or those of their family. Another reason a family may object to BD/DNC is due to the combination of emotional turmoil and confusion in the setting of acute catastrophic brain injury. Sudden severe damage to a family member’s brain can lead to anger and denial, which can be compounded in the setting of a lack of awareness about BD/DNC and a sea of misinformation equating BD/DNC to a coma or persistent vegetative state. This misinformation is perpetuated by the inaccurate portrayal of BD/DNC in the media, on television and in movies (Lewis et al. 2016a, b, 2017a). Use of misleading language, such as saying that a patient will “die” once the ventilator is withdrawn or referring to “life support” as opposed to “organ support” can exacerbate pre-existing knowledge gaps. These issues become magnified if a family has experienced disappointment with a treatment team, such as in the case of medical errors (Pope 2017). Furthermore, if a family is aware of the potential for organ donation after BD/DNC, this information may promote distrust and the perception that BD/DNC is only being declared to facilitate organ procurement (Pope 2017).

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Consequences of Objections from Families to BD/DNC

Clinical ethics consultants must show compassion towards a grieving family and respect their values and a patient’s autonomy (Olick et al. 2009), but recognize that delaying determination of BD/DNC and discontinuation of organ support is not benign (Lewis and Greer 2018). Continuing organ support after BD/DNC or in the setting of suspected BD/DNC requires use of valuable resources such as clinician time and use of an intensive care unit bed and ventilator for a patient who is known or suspected to be dead rather than a living patient (Lewis et al. 2016b; du Toit and Miller 2016). This situation could potentially jeopardize the care of other patients, which is a violation of the principle of distributive justice, especially when resources are scarce (Bhagat and Lewis 2020). Furthermore, delaying determination of BD/DNC and discontinuation of support could interfere with the normal grieving process. It also creates confusion and distrust amongst the public due to inconsistent and negotiated standards of death, and has the potential to undermine the integrity of the medical profession and may be seen as a violation of the dignity of deceased patients (Burkle et al. 2014; Russell et al. 2019).

18.7

Ways to Address Objections from Families to BD/DNC

The aim of CEC is to navigate how to provide and facilitate “reasonable accommodation” for a family while considering other factors, such as appropriate use of resources and the moral distress of a treatment team (Flamm et al. 2014). Ethics consultants should act as liaisons between a family and treatment team.

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Clinical ethics consultants should be aware of the only resource published by a medical society on management of requests to delay determination of BD/DNC or continue organ support after BD/DNC, a statement written by the AAN in 2019 (Russell et al. 2019). Because many families who object to determination of BD/DNC or discontinuation of organ support eventually accept the death of their loved one after a short delay (du Toit and Miller 2016), the AAN endorses the provision of limited accommodation based on a patient’s religious, moral, social, and cultural values (Russell et al. 2019). However, ethics consultants must recognize the limitations of hospital resources and, while maintaining compassion for a family, acknowledge that the medical needs for living patients supersede those of a patient who is brain dead (Flamm et al. 2014; Olick et al. 2009; Russell et al. 2019). Ethics consultants should work with the medical team, legal and administrative officials from the institution, clergy members, and social workers to formulate responses to requests for indefinite accommodation using a team based approach (Olick et al. 2009; Russell et al. 2019). If a dispute cannot be reconciled, the last resort should be to transfer a patient to another facility or consider unilateral withdrawal of treatment (Russell et al. 2019). The AAN notes that indefinite accommodation should be avoided due to its potential for harm to the deceased, family, care team, and society, except in the case of New Jersey where the law indicates that death should be declared using cardiopulmonary criteria in the setting of religious objection to BD/DNC (“New Jersey Brain Death Statute” 2014).

18.8

Ways to Prevent Controversy Due to Objections from Families to BD/DNC

In addition to responding to objections to BD/DNC, CECs should aim to practice “preventive ethics” to avoid having families object to BD/DNC (Russell et al. 2019). This approach can be accomplished by promoting public education on BD/DNC and implementing training programs to improve clinician competency at all aspects of BD/DNC determination, including communication. Ethics consultants should teach healthcare professionals how to communicate in an empathetic, consistent and clear manner to minimize confusion and conflict (Bibler et al. 2017; Lewis et al. 2017a, b, c; Flamm et al. 2014). The goal should be to create an institutional culture and behavior that is well accepted and understood, just like death by cardiopulmonary criteria (Burck et al. 2006). Additionally, ethics consultants should facilitate creation of transparent institutional policies on navigating objections to BD/DNC that are provided to both clinicians and families in the setting of an objection (Lewis et al. 2016b; Flamm et al. 2014; Austin 2017). Policies should delineate parameters regarding circumstances in which accommodation may occur, the time frame of accommodation, and medical interventions that will or will not be provided, including chest compressions and placement of a Do-Not-Resuscitate (DNR) order (Flamm et al. 2014). Providing

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families a copy of the policy may help alleviate mistrust in some cases, as this demonstrates their loved one is not being discriminated against in some way.

18.9

Objections from Healthcare Professionals to BD/DNC

Similar to families, healthcare professionals may object to BD/DNC due to religious beliefs or a fundamental disagreement with the concept of BD/DNC due to persistence of visceral and circulatory functions (Truog et al. 2018; Shewmon 1998; Bernat 2006). These individuals view BD/DNC as a “legal fiction”(Truog and Miller 2014), and, therefore, feel that the concepts of futility and resource scarcity should not apply to patients who are brain dead and that treatment should be continued if a family wishes (Sarbey 2016). Bernat argues that BD/DNC is biologically and conceptually defensible because a brain dead patient has lost the critical “function of the organism as a whole”(Bernat 2006, 2018). Clinical ethics consultants should be aware of the potential for this type of objection and should recommend an attempt be made to transfer of care to another provider or facility if needed, recognizing it may not be possible to find an accepting facility (Russell et al. 2019).

18.10

The Need for Consent Prior to Determination of BD/DNC

In addition to philosophical disputes over the concept of BD/DNC, there continues to be debate amongst the medical and bioethics communities on whether informed consent should be obtained from surrogates prior to performing apnea testing (Pope 2020). State laws currently vary on this issue. Recently, there have been prominent legal cases about this; findings have been mixed (Lewis and Greer 2018). Advocates for informed consent argue that apnea testing is a medical procedure that carries a risk of iatrogenic harm without direct benefit to patients (Berkowitz and Garrett 2020). Those who oppose the need for consent argue that apnea testing is not a medical procedure or treatment, but rather an essential component of the assessment needed to determine whether a patient is alive or dead (Bhagat and Lewis 2020; Lewis and Greer 2018; Bertino and Potter 2020; Antommaria et al. 2020). The AAN position statement reinforces the moral authority and professional responsibility to determine BD/DNC. Therefore, clinical ethics consultants should inform clinicians they are not morally obligated to obtain informed consent from a family prior to BD/DNC determination, but that they should inform a family of the intent to perform the examination, educate them about the process and meaning of BD/DNC determination and allow them to observe the assessment to promote comprehension and decrease risk of mistrust (Pope 2017; Russell et al. 2019).

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Conclusion

Ethics consultants must be familiar with the medical and legal history of BD/DNC and be prepared for questions related to the challenges discussed herein. A teambased approach in which a clinical ethics consultant plays a central role is recommended to navigate these thorny issues.

References 210 Ill. Comp. Stat. §85/6.24.4. 1968. A Definition of Irreversible Coma. Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. The Journal of the American Medical Association 205 (6): 337–340. Alex Pierce v. Loma Linda University Medical Center. 2016. Antommaria, Armand H., William Sveen Matheny, and Erika L. Stalets. 2020. Informed Consent Should Not Be Required for Apnea Testing and Arguing It Should Misses the Point. American Journal of Bioethics 20 (6): 25–27. Austin, Wendy. 2017. What Is the Role of Ethics Consultation in the Moral Habitability of Health Care Environments? AMA Journal of Ethics 19 (6): 595–600. Berkowitz, Ivor, and Jeremy R. Garrett. 2020. Legal and Ethical Considerations for Requiring Consent for Apnea Testing in Brain Death Determination. American Journal of Bioethics 20 (6): 4–16. Bernat, James L. 2006. The Whole-Brain Concept of Death Remains Optimum Public Policy. Journal of Law, Medicine and Ethics 34 (1): 35–43. ———. 2018. A Conceptual Justification for Brain Death. Hastings Center Report 48: S19–S21. Bertino, Joseph, and Jordan Potter. 2020. Requiring Consent for Brain-Death Testing: A Perilous Proposal. American Journal of Bioethics 20 (6): 28–30. Bhagat, Dhristie, and Ariane Lewis. 2020. The Case Against Solicitation of Consent for Apnea Testing. American Journal of Bioethics 20 (6): 20–22. Bibler, Trevor, Kyle Galbraith, and Kyle Brothers. 2017. Ethics and Brain Death in Pediatrics: Recent Controversy and Practical Suggestions. Journal of Pediatric Intensive Care 06 (04): 240–244. Burck, Russell, Lisa Anderson-Shaw, Mark Sheldon, and Erin A. Egan. 2006. The Clinical Response to Brain Death: A Policy Proposal. JONA’S Healthcare Law, Ethics and Regulation 8 (2): 53–59. Burkle, Christopher M., Richard R. Sharp, and Eelco F. Wijdicks. 2014. Why Brain Death is Considered Death and Why There Should be no Confusion. Neurology 83 (16): 1464–1469. Ca. Health & Saf. Code §1254.4. Flamm, Anne Lederman, Martin L. Smith, and Patricia A. Mayer. 2014. Family Members’ Requests to Extend Physiologic Support after Declaration of Brain Death: A Case Series Analysis and Proposed Guidelines for Clinical Management. Journal of Clinical Ethics 25 (3): 222–237. 1981. Guidelines for the Determination of Death. Report of the Medical Consultants on the Diagnosis of Death to the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. The Journal of the American Medical Association 246 (19): 2184–2186. In Re: Allen Callaway. 2016 DG-16-08.

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In Re: Mirranda Grace Lawson. 2016 CL16-2358, City of Richmond Circuit Court. Israel Stinson v. Children’s Hospital Los Angeles. 2016 BS164387. Lashauna Lowry as next friend of Titus Jermaine Cromer, Jr. v. Beaumont Health. 2019 19-cv– 13293. Lewis, A., and D. Greer. 2018. Medicolegal Complications of Apnoea Testing for Determination of Brain Death. Journal of Bioethical Inquiry 15 (3): 417–428. Lewis, A., J. Weaver, and A. Caplan. 2017a. Portrayal of Brain Death in Film and Television. American Journal of Transplantation 17 (3): 761–769. Lewis, Ariane. 2018a. Contentious Ethical and Legal Aspects of Determination of Brain Death. Seminars in Neurology 38 (5): 576–582. ———. 2018b. Reconciling the Case of Jahi McMath. Neurocritical Care 29 (1): 20–22. ———. 2019. A Survey of Multidenominational Rabbis on Death by Neurologic Criteria. Neurocritical Care 31 (2): 411–418. Lewis, Ariane, Nellie Adams, Arun Chopra, and Matthew Kirschen. 2017b. Organ Support after Death by Neurologic Criteria in Pediatric Patients. Critical Care Medicine 45 (9): e916–e924. Lewis, Ariane, Richard J. Bonnie, and Thaddeus Pope. 2020a. It’s Time to Revise the Uniform Determination of Death Act. Ann Intern Med 172 (2): 143–144. Lewis, Ariane, Katherine Cahn-Fuller, and Arthur Caplan. 2017c. Shouldn’t Dead Be Dead?: The Search for a Uniform Definition of Death. Journal of Law, Medicine, and Ethics 45 (1): 112–128. Lewis, Ariane, Elizabeth Kitamura, and Aasim I. Padela. 2020b. Allied Muslim Healthcare Professional Perspectives on Death by Neurologic Criteria. Neurocritical Care. Lewis, Ariane, Aaron S. Lord, Barry M. Czeisler, and Arthur Caplan. 2016a. Public Education and Misinformation on Brain Death in Mainstream Media. Clinical Transplantation 30 (9): 1082–1089. Lewis, Ariane, and Olivia Scheyer. 2019. Legal Objections to Use of Neurologic Criteria to Declare Death in the United States: 1968 to 2017. Chest 155 (6): 1234–1245. Lewis, Ariane, Panayiotis Varelas, and David Greer. 2016b. Prolonging Support After Brain Death: When Families Ask for More. Neurocritical Care 24 (3): 481–487. Mollaret, P., and M. Goulon. 1959. Le Coma Depasse. Revue Neurologique 101 (July): 3–15. New Jersey Brain Death Statute. 2014. New York State Guidelines for Determining Brain Death. 2011. Olick, Robert S., Eli A. Braun, and Joel Potash. 2009. Accommodating Religious and Moral Objections to Neurological Death. Journal of Clinical Ethics 20 (2): 183–191. Pope, Thaddeus Mason. 2017. Brain Death Forsaken: Growing Conflict and New Legal Challenges. Journal of Legal Medicine 37 (3–4): 265–324. ———. 2020. Brain Death Testing: Time for National Uniformity. American Journal of Bioethics 20 (6): 1–3. Rady, Mohamed Y., and Joseph L. Verheijde. 2013. Brain-Dead Patients Are Not Cadavers: The Need to Revise the Definition of Death in Muslim Communities. HEC Forum 25 (1): 25–45. Russell, James A., Leon G. Epstein, David M. Greer, Matthew Kirschen, Michael A. Rubin, Ariane Lewis, and Brain Death Working Group. 2019. Brain Death, the Determination of Brain Death, and Member Guidance for Brain Death Accommodation Requests. Neurology 92 (5): 228–232. Sarbey, Ben. 2016. Definitions of Death: Brain Death and What Matters in a Person. Journal of Law and the Biosciences 3 (3): 743–752. Segal, Eran. 2014. Religious Objections to Brain Death. Journal of Critical Care 29 (5): 875–877. Setta, Susan M., and Sam D. Shemie. 2015. An Explanation and Analysis of How World Religions Formulate Their Ethical Decisions on Withdrawing Treatment and Determining Death. Philosophy, Ethics, and Humanities in Medicine 10 (1): 1–22.

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Shewmon, D.A. 1998. Chronic ‘Brain Death’: Meta-Analysis and Conceptual Consequences. Neurology 51 (6): 1538–1545. du Toit, Jessica, and Franklin Miller. 2016. The Ethics of Continued Life-Sustaining Treatment for Those Diagnosed as Brain-Dead. Bioethics 30 (3): 151–158. Truog, Robert D., and Franklin G. Miller. 2014. Changing the Conversation About Brain Death. American Journal of Bioethics 14 (8): 9–14. Truog, Robert D., Thaddeus Mason Pope, and David S. Jones. 2018. The 50-Year Legacy of the Harvard Report on Brain Death. Journal of the American Medical Association 320 (4): 335–336.

Chapter 19

When Patients Still Hope, But Doctors See No More Therapeutic Options: Ethical Debates on Futility and Potentially Inappropriate Treatment Christof Mandry

Abstract In everyday clinical practice, difficult situations can arise when physicians reject further therapeutic treatment of seriously ill patients as no longer medically justified, but patients or their representatives do not want to give up hope of improvement, demanding the continuation of therapies and life-sustaining measures. In such cases, is patient autonomy more decisive, or the physician’s assessment regarding the prospects of a prolonged treatment? For ethical counseling or clinical ethics consultation (CEC), it is important that communication is not only about medical facts, risks, and probable treatment prospects, but that moral evaluations also play a role. This chapter shows that ethical integrity is at stake for both sides, i.e., patients or their representatives and medical staff. Ethics consultation can often help establish a balance between patients’ autonomy and physicians’ responsibility and create a mutually acceptable solution if it is able to disentangle the different understandings and evaluations. For this purpose, the medical ethics debate provides helpful insights, for example, regarding the futility concepts applied and the inherent understandings of efficiency, effectiveness, and appropriateness. Distinct procedural models make it possible to find a fair way of dealing with persisting value conflicts. The paper concludes with an outlook on current challenges with this enduring ethical problem. Keywords End-of-life · Decision making · Life-sustaining treatment · Surrogate decision making · Ethical communication · Patient’s autonomy · Professional ethos · Quality of life assessment

C. Mandry (*) Department of Catholic Theology, Goethe University Frankfurt/Main, Frankfurt am Main, Germany e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_19

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Objectives

1. To examine when patients or their representatives demand therapeutic or lifeprolonging measures that clinicians do not consider useful and which moral values are at stake on both sides. 2. To make clear that concepts of medical futility always include value judgments, a purely medical definition is not possible, and thus a discursive procedure to resolve the conflict between clinicians and surrogate decision makers is ethically appropriate. 3. To argue that the term “futile” should be limited to the few cases in which a treatment goal is physiologically unattainable; otherwise, it should be referred to as “potentially inappropriate” treatment.

19.2

Case

Mahmut N. is in intensive care in a German hospital with advanced pancreatic cancer. The 62-year-old patient, who has already undergone several operations and chemotherapy, is diagnosed with metastases in the liver. The patient is also a longterm smoker, and his general condition is not good. He is diabetic and suffers from shortness of breath; he has also lost a lot of weight. Mahmut is partially lethargic and rarely responsive. Because he now expresses himself almost exclusively in Arabic, communication with him is difficult. His wife and four children visit him frequently. When the physician tells them that further cancer treatment is no longer indicated for Mahmut and that the transition to palliative treatment is being prepared, they react with indignation; everything must be done to save Mahmut’s life. Anything else would be incompatible with his personal convictions. “Giving up” for Mahmut is out of the question. It is a difficult ethical decision whether and for how long a patient should receive further therapeutic or life-sustaining treatment, or when it is no longer indicated because, according to medical expertise, the disease is terminal. The assessments of physicians and other healthcare professionals may differ considerably from those of patients or surrogate decision makers. How should ethical decisions be made when patients or surrogates demand medical measures that are no longer justified and appropriate in the opinion of a physician? Attempts to decide this question on a purely medical basis have proved problematic. The assessment that therapeutic measures are medically “futile” always includes value judgments that are not necessarily shared by patients. In such situations, ethical counseling faces the task of respecting both the autonomy of patients and the moral integrity of clinicians and can often help to establish an ethically valid balance between the two.

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Why Patients and Surrogates Demand Non-indicated Treatments

As in Mahmut’s case, there are a number of reasons why patients or their surrogates insist on treatment that doctors refuse to perform (White and Pope 2016). It is important to recognize that these are not necessarily irrational or unresolved desires. There is often a mix of communication, emotional, cultural, religious and moral motives. In this case, there is clearly a lack of trust in the physician: relatives fear that Mahmut is not being cared for as well as other patients, and that the medical community will abandon him sooner than necessary. This fear may be due to experiences of discrimination that they have had as immigrants from a North African country. Patients often do not value the prognostic abilities of physicians very highly. Perhaps Mahmut’s relatives, as laypersons, have not fully understood his condition. There may also be emotional and psychological reasons that make it difficult for them to accept the end of their loved one’s life. Moreover, religious and cultural beliefs may be at the root of the conflict with the treatment team. For Muslims, life has a high value and there is a far-reaching religious and moral obligation to maintain life. The relatives, therefore, may weigh the question of the patient’s quality of life completely differently than the treatment team (Cifrese and Rincon 2018). The relatives may also see it as their duty to defend the patient’s life. Finally, there are always patients or surrogates who hope for a miracle and, therefore, do not want to miss any chance, no matter how small, to extend the life of the patient. Ethics consultants must ensure that relatives are given the necessary resources to cope with such an emotionally stressful situation, such as understandable medical information, but also sufficient time, and psychological support. Many conflicts can be resolved if ethics counseling can establish a climate of trust in which both sides, surrogates and treatment team, recognise that the views of both sides are necessary, in order to determine which treatment is most likely to benefit the patient.

19.4

Why Doctors Reject Patients’ or Surrogates’ Potentially Inappropriate Treatment Requests

Even though the principle of patient autonomy has a high value in today’s medical and clinical ethics, it is not the only morally relevant aspect. Clinicians invoke a multitude of ethical reasons why patients should not receive a measure that they consider to be non-indicated or ineffective, even if the patient or surrogates request it (White and Pope 2016; Jecker 2017). There is also the question of medical identity: physicians do not see themselves as medical service providers who simply sell their clients the services they want. Rather, they have to defend a professional ethos that has its own moral standards. The treatment proposals of the treatment team are therefore not exclusively rooted in medical evidence, but also reflect the moral standards of the medical community. In terms of content, the medical ethos is usually

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based on the four principles of doing no harm, benevolence, respect for patient autonomy, and justice. One of the most important reasons the treatment team does not want to continue Mahmut’s curative treatment, but considers palliative treatment to be appropriate, is to protect him from further suffering. Many therapeutic interventions are associated with severe risks and side effects and can be very unpleasant for the patient. Clinicians consider them to be justified only if the benefits for the patient outweigh the side effects and risks. They cannot justify inflicting unjustified physical and/or psychological suffering on the patient. Further chemotherapy would put Mahmut under severe stress, which in their opinion would not be matched by the prospect of improving health or quality of life. In addition, clinicians also wish to respect patient autonomy. As in Mahmut’s case, they may believe that the relatives’ extensive medical demands do not correspond to what the patient really wants. Clinicians may be concerned that surrogates may be inclined to make more aggressive treatment decisions and demand longer life-sustaining measures than patients would request for themselves (Shalowitz et al. 2006). Finally, one aspect that can play a role, and which clinicians can hardly address openly with individual patients, but which nevertheless influences them, is the fair use of medical resources. Intensive care beds, therapies and competent care are expensive and scarce, and treatment teams want to use them responsibly. Complying with the surrogates’ wishes that the team deems medically unjustified and pointless seems like a waste of resources.

19.5

Medical Futility in the Discussion

The concept of futility is about limiting patient autonomy – the patient has no right to futile treatment and clinicians are morally obliged to withhold treatments or lifesupport measures that have no prospect of success. However, several decades of medical-ethical discussions have not resulted in a consensus on how medical futility is to be defined, or what criteria must be met (Müller and Kaiser 2018; Brown 2018). Above all, the concept of futility has not lived up to its claim of defining objectively and being evidence-based when treatments or life-sustaining measures are useless. The least controversial is the narrow understanding of futility, which is limited to the physiological impossibility of achieving a medical goal with a specific measurable outcome. However, the concept of physiological futility is of little clinical significance, as most controversy revolves around measures whose probability of success is low but greater than zero. In clinical practice, it is mostly a matter of probability, and futility controversies are usually disputes about medical efficacy, efficiency, and appropriateness. A distinction is made here between the definition of quantitative and qualitative approaches and procedural approaches (Schneiderman 2011; White and Pope 2016; Kon et al. 2016). Quantitative approaches define those medical measures as futile that do not achieve a certain probability of success. In the discussion, values of 1% chance of success are most frequently represented, meaning the treatment goal has not been achieved in the last 100 cases (Schneiderman et al. 1990). In special areas of application, however, even higher chances of success are

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still considered futile (Schlegel et al. 2018). The problem is that the threshold value is set arbitrarily and contains a value decision as to when something is “futile” in the sense of “inefficient”. Qualitative approaches, on the other hand, describe treatments as futile, which either do not lead to the patient surviving outside the intensive care unit (ICU), or if the treatment does not provide an acceptable quality of life for the patient. Also, if the patient is permanently unconscious (i.e. does not consciously experience an improvement in his condition) the treatment is considered to be futile. Finally, medical interventions are classified as futile if they either do not postpone imminent death or do not change the fact that the patient will die within weeks or months of his or her underlying disease (“lethal condition futility”) (Cifrese and Rincon 2018). To the extent that they imply quality of life assessments, these definitions are clearly based on evaluative notions such as the idea that only conscious living makes sense, or that a minimum of interaction is part of a full life. However, from the perspective of patients and surrogates, even low chances of success or modest quality of life may still seem attractive or acceptable. More importantly, while patients can make decisions for themselves on such a value basis, they should not become the subject of value judgments by clinicians. In the event of a conflict, it is necessary to consider, in the discussion between the patient or surrogate and the treatment team, whether the low chance of success can be reconciled with the side effects of treatment. This latter approach is taken by procedural approaches. Instead of defining a concept of futility, a process of shared decision making between the patient or the surrogate and the treatment team, often involving several stages, aims to find a solution acceptable to both sides. Clinical ethics consultants have a key role to play. In particular, they must ensure the appropriate communication, which is essential in this approach, and act as independent mediators between the parties involved. They often have a kind of process responsibility, ensuring that all parties involved have their say, that the procedure is transparent to all, that no essential aspects are overlooked, and that misunderstandings are identified and resolved. They must ensure that the discussion of the concrete well-being of patients is at the centre of the process, and that it is discussed as comprehensively and solubly oriented as possible. In order to make the procedural character clear, the term “potentially inappropriate treatment” is used when at least a minimal chance of the success of the treatment in question cannot be excluded. The process must then clarify whether the treatment prospect justifies the associated disadvantages and risks. The term “futile” is limited to the few cases in which a treatment is simply unsuitable in order to achieve the intended physiological effect.

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A Process Model for Dealing with Requests for Potentially Inappropriate Treatment in a Clinical Context

In 2015, a number of medical societies published a policy statement recommending a seven-step procedure for when patients in critical stages of disease, or surrogates, request medical treatments that the treatment team does not believe will help (Bosslet et al. 2015). This model has received widespread approval (Kon et al. 2016). Hospitals are responsible for developing guidelines and processes based on the seven steps, and for training their staff accordingly. It is also important, in this context, that ethicists and treatment teams understand the types of conflicts to which the model refers: desires of representatives for treatments that are considered “physiological futile”, and demands for intervention that is prohibited by law or excluded by accepted guidelines, must not be fulfilled. Clinicians must explain this in an understandable way and offer emotional support for the surrogates. In addition, it is recommended that appropriate counseling be provided to patients and surrogates long before difficult decisions are made, for example through Advance Care Counseling (Šarić et al. 2017). The following process is regarded as a last resort for dealing with conflicts that persist even after appropriate clarification and careful communication has been exhausted. In this context, it is particularly important that physicians articulate their assessment of “potentially inappropriate treatment” in such a way that it is understood, as a starting point for a consensus oriented approach, and not as a fixed judgment. The seven steps include: (1) Ethical counseling expertise. The treatment team should seek ethical advice that is independent of the medical assessment of the treatment as “potentially inappropriate”. Both the patient or surrogate and the treatment team should receive psychological support, and both should be encouraged to rethink their respective positions when the process reveals new perspectives. (2) The patient/surrogate should be informed in writing and orally that the process is being initiated and how it is proceeding. (3) The treatment team should obtain a further independent medical assessment of the patient’s condition, incorporating both sides’ views. (4) If the conflict persists, the case should be evaluated by an independent, interdisciplinary committee. This committee should include not only the physicians and medical personnel, but also representatives of the patient’s perspective, especially if the patient belongs to an ethnic or religious minority. The role of the committee is to check whether the conflict resolution process up to this point has been correct, and whether both sides have articulated their views, and to confirm whether the treatment team’s assessment that the treatment required is “potentially inappropriate” is in the consensus of professional opinion. (5) If the committee confirms the treatment team’s assessment and the patient/surrogate maintain their position, they should be allowed to transfer the patient to another facility. (6) The patient/surrogate should be informed about the possibility of initiating a legal review. (7) Implementing the conflict resolution process: If the committee agrees with the patient/surrogate’s assertion that the lifeprolonging intervention should be carried out, the treatment team should either

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provide it or transfer the patient to another facility that provides it. If the committee agrees with the treatment team’s position, no transfer to another facility takes place, and no appeal is made, the physicians may refuse the requested treatment. The physician should draw up a treatment plan that includes the appropriate treatment, including palliative care. If, under time pressure, it is not possible to follow the whole process, it should be carried out as far as possible. The hospital should regularly evaluate the experience gained and learned.

19.7

Outlook

One of the permanent challenges of ethics counseling is the establishment, maintenance and further development of concrete communication practices and processes on controversial treatment decisions based on the seven-step model outlined above. For this purpose, further training and education is indispensable, both for the ethics consultants themselves and for the medical community. New diseases like Covid-19 raise fundamental questions: how should possible benefit and harm for the patient be responsibly assessed if there is no reliable data on the course of the disease? When resources are scarce, is it ethically permissible not to afford one patient treatment that would more likely provide the same or greater benefit to another? What ethical principles would justify this action? Finally, it is foreseeable that clinical ethics consulting will also have to deal with medical decision-making systems that use artificial intelligence to integrate various clinical parameters of scoring systems, thus promising a certainty of decision that is superior to conventional medical experience. However, even improved prognostic algorithms based on a broad database will not solve a fundamental problem of medical prognosis: the probabilistic nature of prediction models is derived from cohort data, which is then applied to individual cases. Together with the interplay between patient condition and environmental factors, this leads to fundamental uncertainty in the calculation of individual treatment prospects. Artificial Intelligence systems therefore are able to reduce (but not eliminate) the uncertainties of prognosis, especially in complex cases, so that even in the future, conflicts cannot be simply put aside by referring to reliable medical success data (Beil et al. 2019). Ethics counseling should nevertheless prepare for the fact that clinicians, and probably also patients and surrogates, will use medical decision-making systems and integrate this increase in knowledge, but also its limitations, into counseling.

References Beil, Michael, Ingo Proft, Daniel van Heerden, Sigal Sviri, and Peter Vernon van Heerden. 2019. Ethical Considerations About Artificial Intelligence for Prognostication in Intensive Care. Intensive Care Medicine Experimental 7 (1): 70. https://doi.org/10.1186/s40635-019-0286-6.

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Bosslet, Gabriel T., Thaddeus M. Pope, Gordon D. Rubenfeld, Bernard Lo, Robert D. Truog, Cynda H. Rushton, J. Randall Curtis, Dee W. Ford, Molly Osborne, Cheryl Misak, David H. Au, Elie Azoulay, Baruch Brody, Brenda G. Fahy, Jesse B. Hall, Jozef Kesecioglu, Alexander A. Kon, Kathleen O. Lindell, and Douglas B. White. 2015. An Official ATS/AACN/ACCP/ESICM/ SCCM Policy Statement: Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Units. American Journal of Respiratory and Critical Care Medicine 191 (11): 1318–1330. https://doi.org/10.1164/rccm.201505-0924ST. Brown, Grattan T. 2018. Medical Futility in Concept, Culture, and Practice. Journal of Clinical Ethics 29 (2): 114–132. Cifrese, Laura, and Fred Rincon. 2018. Futility and Patients Who Insist on Medically Ineffective Therapy. Seminars in Neurology 38 (5): 561–568. https://doi.org/10.1055/s-0038-1667386. Jecker, Nancy S. 2017. Medical Futility and Respect for Patient Autonomy. In Ethics at the End of Life: New Issues and Arguments, ed. John K. Davis, 138–151. New York/London: Routledge. Kon, Alexander A., Eric K. Shepard, Nneka O. Sederstrom, Sandra M. Swoboda, Mary Faith Marshall, Barbara Birriel, and Fred Rincon. 2016. Defining Futile and Potentially Inappropriate Interventions: A Policy Statement From the Society of Critical Care Medicine Ethics Committee. Critical Care Medicine 44 (9): 1769–1774. https://doi.org/10.1097/CCM. 0000000000001965. Müller, Regina, and Stephanie Kaiser. 2018. Perceptions of Medical Futility in Clinical Practice – A Qualitative Systematic Review. Journal of Critical Care 48: 78–84. https://doi.org/10.1016/j. jcrc.2018.08.008. Šarić, Lenko, Ivana Prkić, and Marko Jukić. 2017. Futile Treatment-A Review. Journal of Bioethical Inquiry 14 (3): 329–337. https://doi.org/10.1007/s11673-017-9793-x. Schlegel, Andrea, Marit Kalisvaart, Irene Scalera, Richard W. Laing, Hynek Mergental, Darius F. Mirza, Thamara Perera, John Isaac, Philipp Dutkowski, and Paolo Muiesan. 2018. The UK DCD Risk Score: A New Proposal to Define Futility In Donation-After-Circulatory-Death Liver Transplantation. Journal of Hepatology 68 (3): 456–464. https://doi.org/10.1016/j.jhep.2017. 10.034. Schneiderman, Lawrence J. 2011. Defining Medical Futility and Improving Medical Care. Journal of Bioethical Inquiry 8 (2): 123–131. https://doi.org/10.1007/s11673-011-9293-3. Schneiderman, Lawrence J., Nancy S. Jecker, and Albert R. Jonsen. 1990. Medical Futility: Its Meaning and Implications. British Medical Journal (Clinical Research Ed.) 112 (12): 949–954. Shalowitz, David I., Elizabeth Garrett-Mayer, and David Wendler. 2006. The Accuracy of Surrogate Decision Makers: A Systematic Review. Archives of Internal Medicine 166 (5): 493–497. https://doi.org/10.1001/archinte.166.5.493. White, Douglas B., and Thaddeus M. Pope. 2016. Medical Futility and Potentially Inappropriate Treatment. In The Oxford Handbook of Ethics at the End of Life, ed. Stuart J. Youngner and Robert M. Arnold, 65–86. New York: Oxford University Press. Oxford handbooks online.

Chapter 20

Physician Aid in Dying in the United States: A Prescription for Death or Control? Felicia Cohn

Abstract Physician-aid-in-dying (PAD) or assisted suicide (AS) laws have long been controversial. They allow mentally competent adults, residing in states in which the practice has been legalized, to voluntarily request and receive prescription medication to hasten death, provided they have been diagnosed with terminal illness, have a confirmed prognosis of 6 months of life or less, and can self-administer the medications. This chapter describes these laws in the United States, noting the common elements across states. Patient qualifications for access to aid-in-dying services are detailed and the impact and limits of these laws on patient care are explored. The PAD process requirements are stringent, designed to protect individuals from misuse and abuse, and therefore may also result in inhibiting access to these services. A detailed case description provides an opportunity to examine the practical and ethical implications of PAD practices, including issues of access, conscience, professional role, and implementation. The role of the clinical ethics consultant is considered in addressing these issues in the ongoing societal debate about PAD as well as in responding to particular cases. The ethics consultant may encounter ethical questions and conflicts regarding patient capacity and voluntariness, physician obligations, distinctions between suicide and aid-in-dying, alternatives, and barriers between aid-in-dying and euthanasia. This chapter will help prepare clinical ethicists to address these ethical and practical issues as more states consider legalization. Keywords Physician-aid-in-dying · Death with dignity · Physician-assisted dying · Physician-assisted suicide · End of life · Autonomy · Rational suicide · Opt-out

20.1

Objectives

1. Understand the common elements of aid-in-dying laws. 2. Distinguish between patients that qualify for aid-in-dying and those that do not.

F. Cohn (*) Bioethics, Kaiser Permanents Orange County, Anaheim, CA, USA e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_20

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3. Identify the limits of aid-in-dying laws and their impact on patient care. 4. Consider the role of the healthcare ethics consultant in aid-in-dying cases.

20.2

Case

“I will not let the cancer win! I want to die on my own terms,” the patient said to his oncologist upon reviewing his MRI results. Mr. T,1 a 49-year-old man, had just learned that his severe headaches were the result of Glioblastoma multiforme, the most aggressive type of primary brain tumor. Dr. G explained treatment options but noted that the prognosis is very poor even with treatment indicating most patients die within 12–18 months after diagnosis. The oncologist, uncomfortable with his patient’s statement, probed the comment about dying. “Can’t you just give me the pill?” responded the patient. The oncologist encouraged the patient to consider the treatment options, think about his family, and made a follow-up appointment. He also referred the patient to the palliative care program, requested a psychiatric consult, and notified the Ethics Committee. The psychiatrist assessed Mr. T’s history of depression and reported suicidal ideation. Mr. T does not want to die but also does not want to suffer the pain and indignity of treatment without the likelihood of cure or extended life. He does not want his children’s memories to be of him wasting away, fighting a losing battle, and he refuses to burden his family. He wants control. The psychiatrist determines that Mr. T is demoralized, not depressed, and believes he is making a “rational choice.” The psychiatrist struggles with his report, noting, “usually my role is to provide treatment aimed at preventing suicide. In this case it feels like my role is to facilitate it.” Mr. T persists in his wish to proceed with PAD. His family is saddened, but supportive. In a follow-up appointment, Mr. T asks his oncologist for help. Dr. G sympathizes, but refuses, explaining he believes his role is to treat to extend life. He does not feel comfortable helping Mr. T end his life, even while recognizing his suffering. He does not want his name on a lethal prescription or his other patients to think he will “give up” on them. Mr. T is disappointed and feels abandoned. After enrolling in hospice at home, the palliative care physician agrees to help the patient with PAD. Mr. T argues he should not have to wait the 15 days his state requires between his requests given the prior difficulties. The process of acquiring a second opinion had already taken 2 months. When the prescription is finally written, Mr. T learns his insurance does not cover the expensive medications used for PAD. His family agreed to pay out of pocket, and while awaiting the delivery of the prescription, he ends up in the hospital. His cancer progressed and his physicians determine he lacks decision-making capacity. His wife provides an Advance Directive identifying her as his agent for healthcare decisions and specifying the use of the end-of-life medicine.

1

The case represents an amalgam of actual cases, but is itself hypothetical.

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Physician-Aid-In-Dying Laws: An Ongoing Ethical Debate

The physician-aid-in-dying2 (PAD) laws, also known as death with dignity, physician-assisted dying, or physician-assisted suicide are founded in the autonomy of the individual to exert some control over the timing and circumstances of their death. Oregon passed the Death with Dignity Act in 1994 and again in 1997, allowing qualified patients to legally obtain a prescription medication intended to end their lives. Following Oregon; Washington (2008); Vermont (2013); Colorado, the District of Columbia and California (2016); Hawaii (2018 and 2019); Maine (2019); and New Jersey (2019) passed similar legislation (World Population Review 2019; Death with Dignity 2020). Montana does not have a statute, but PAD is legal following a 2009 state Supreme Court ruling in Baxter v. Montana in which the Court determined that nothing in state law prohibited the prescription of lethal medication and found little relevant public policy difference between doing so and withdrawing life support from a terminal patient. It provides physicians with legal protections if they have the patient’s request in writing (Baxter v. State 2009). Legislative efforts both to criminalize and provide a regulatory framework for PAD have failed. The majority of the remaining states prohibit PAD, while a few do not address it in the law. Continued controversy over PAD legalization is reflected in the societal debate over terminology. More than a mere semantic issue, the terms used highlight arguments for and against PAD. Critics of PAD persist in the language of “physician-assisted suicide,” stressing the negative association with suicide and suggesting terms like “aid-in-dying” are inappropriate euphemisms designed to disguise an ethically unacceptable practice as good medicine. Further, they note such terms are easily confused both with the work of palliative care, which is defined as a service to aid the dying, and with euthanasia which is an intentional hastening of death (Council on Judicial and Ethical Affairs 2018). Proponents of physician participation and patient rights use the language of “death with dignity” and “aidin-dying” emphasizing physician commitment to support patients and individual autonomy and control. These connotations are evident in the titles of legislation in states that have legalized PAD.

20.4

Legal Requirements: Qualified Patients and Reporting

Though variously titled, the laws essentially mirror the requirements of the Oregon Death with Dignity Act. The laws allow mentally competent adult state residents diagnosed with terminal illness, with a confirmed prognosis of 6 months of life or less, to voluntarily request and receive prescription medication to hasten death. The The use of the term “physician-aid-in-dying” rather than other terms by which this process is known, is not intended as support or an argument, but rather was selected as a summary term reflective of current legislation.

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PAD process requirements are stringent, designed to protect individuals from misuse and abuse. Generally, two physicians must confirm the patient’s residency, diagnosis, prognosis, mental capacity, and the voluntariness of the request. The requesting individual usually must make two oral requests with a waiting period in between, and a witnessed written request. The individual must also be able to independently self-administer and ingest the prescribed medication. Complete documentation is required to assure legal immunity from prosecution for the involved healthcare professionals. Additional consultations with palliative care and/or psychiatry may also be required by law or in practice, and there may be an additional waiting period between receiving and filling the prescription. While legally available, PAD is rarely used. Between 1998 and 2017, in the five states that issue annual reports3, 4249 prescriptions were written, and only 66.3% of those who received a prescription used the medications to end their lives. The demographics are consistent across states, with the majority of patients being white (94.2%), elderly (age 69–89 years), with diagnoses of cancer (63.1%), evenly divided by gender (male 50.7%), with many college educated (47.7%) (Pro-Con.org 2019). These data suggest that concerns that poor, minority, uneducated and other vulnerable patients will be pressured to utilize PAD have not borne out (Battin, et al. 2007; Quill 2007). However, these data also indicate that a limited and largely privileged population has taken advantage of this process.

20.5

Rational Suicide and the Role of the Psychiatrist

While suicide is not illegal and “assisted suicide” has been legalized in some states, responses to suicide and PAD remain conflicted. Throughout history, responses to suicide have ranged from social permissibility, theological condemnation, legal criminalization, and medicalization. Individuals wishing to take their lives have been viewed as incapable of rational decision making, often placed in psychiatric treatment, and sometimes held involuntarily. Yet, in some circumstances, suicide may be viewed as an appropriate course of action, supported by good reasons, or consistent with an individual’s values, hence a “rational suicide” (Mayo 1986). This concept remains controversial, demonstrating tension between individual autonomy and societal interest in protecting individuals, even from themselves. Individuals may imagine or confront states of existence they perceive to be worse than death, particularly due to illness and suffering. Modern medicine may exacerbate these conditions, creating suffering, prolonging dying with treatments intended to help that instead result in burdens or harms that patients feel outweigh their benefits. Yet, the act of taking one’s life may still seem incomprehensible or just wrong and be interpreted as a sign of mental illness. Such judgment, however, may limit personal autonomy and result in blaming individuals who choose not to endure illness. Society has long allowed patients to refuse life-sustaining treatment and considered this an ethically appropriate exercise of autonomous decision making. Such

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California, Colorado, Oregon, Vermont, and Washington issue annual reports.

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forgoing treatment may be described as a suicidal act rather than an act of suicide, acknowledging the likelihood of death rather than causing it (Cholbi 2017; Beauchamp and Childress 2009). Suicide is defined by the agency of the individual in taking their own life. With PAD, the patients are assisted—provided the means— but still take their own lives, as in suicide. Yet, advocates argue that it is not agency in acting but the agent’s intention that is the key feature of PAD, making PAD a suicidal act, not an act of suicide. The laws have reflected this philosophical distinction by not labeling the deaths of persons who choose to ingest the legally prescribed medications as suicides. The death certificates cite the underlying illness as the cause of death and insurance benefits that would otherwise be suspended by an individual’s suicide remain in effect. Similarly, requests for PAD may not be characterized as suicidal ideation so psychiatric involvement is not mandated. Referrals are necessary only if there is a question regarding whether psychiatric illness affects the patient’s capacity to make this weighty decision voluntarily. Some patients who request PAD may legitimately suffer from depression or other mental illnesses, in which case the psychiatrists will determine if that illness is interfering with the patient’s capacity to make a voluntary decision, as the laws require. Mr. T’s psychiatrist determines the patient’s decision is not related to depression and that the patient demonstrates decision-making capacity. Mr. T, as studies consistently suggest is true for many individuals seeking PAD, is motivated by his wish to control the circumstances of his death rather than a desire to die or concerns about pain and suffering. Since Oregon implemented PAD, the primary reasons patients requesting it have given include decreasing ability to engage in enjoyable activities, loss of autonomy, and loss of dignity (Death with Dignity).

20.6

Opting In or Out: Healthcare Professional Conscience

The PAD laws allow healthcare professionals and health systems to choose whether they will participate or not. Implementation, while necessarily meeting the requirements of the law, may be tailored to reflect organizational resources and practices. Many hospitals, particularly the religiously affiliated, opt out of participation, though individual providers may choose to participate in other settings. Among the hospitals and health systems opting in, identifying physicians and pharmacists to provide these services can be challenging. Access varies according to where you live and receive medical care (Cain et al. 2018). The hospitals that chose to participate generally develop policies to guide implementation and assure the compliance with the laws necessary to prevent legal liability. These policies may add to the already complex requirements of the law, necessitating additional consultations, encouraging palliative care involvement, precluding exercise of PAD (i.e., taking the medication) within their facilities, and limiting the participation of the involved healthcare professionals at the bedside when the patient ingests the lethal medication (Cain et al. 2020).

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Within hospitals that opt in, individual healthcare professionals may opt out. Many physicians believe that PAD fundamentally conflicts with their obligations as professional healers to avoid harm and will undermine trust in their profession (American Medical Association 2016; Yang and Curlin 2016). Others believe PAD to be an inappropriate response to inadequate end-of-life care or that it is inconsistent with the goals of medicine (Snyder et al. 2017). Still others believe taking life in any circumstance is inherently wrong. Dr. G, like some oncologists, believes his role is to support his patients to live with cancer and is concerned about prognostic uncertainty and the stigma of cancer resulting in decision making under duress (O’Rourke et al. 2017). The sheer amount of paperwork is overwhelming for some, particularly given its legal and licensure implications. One poll shows that among physicians who practice in states that legalized PAD, only 17% have participated, 70% have never been asked for assistance, and 13% have declined a request (Ault 2017). Other physicians, however, believe providing PAD appropriately broadens their role. Support appears to be growing (Pecci 2017). For some it is an ethical extension of the right of informed refusal or forgoing life-sustaining treatment. Patients dependent on life-sustaining treatment may choose to allow natural death. Those not dependent may similarly be suffering yet have no recourse to end their misery other than voluntarily forgoing food and water, a course that may prolong dying and produce more suffering. Physicians opting into PAD may believe they are respecting an autonomous patient’s decision, supporting the patient’s goal of a dignified death. The physician is neither merely allowing the patient to die, nor actively bringing about the patient’s death, but honoring a patient’s wishes and providing comfort (Beauchamp and Childress 2009; Shaner 2016).

20.7

A Timely Process?

Beyond the medical and philosophical debates, the practical issues with the implementation of PAD loom. The laws do not require insurance coverage for the PAD medications and federal law precludes the use of federal funds (e.g., Medicare) for these prescriptions (Death with Dignity). The two barbiturates initially used, pentobarbital and secobarbital, may be unavailable or prohibitively expensive (Dear 2019). Other medications are available and more affordable, but concerns remain due to the paucity of research regarding how to effectively end human life. Timing is another practical problem. Patients with dementias or progressive neurological diseases are unlikely to qualify as terminally ill until it is too late to voluntarily self-administer the medication. This limitation, created to protect patients from involuntary or nonvoluntary application, also precludes access to many who might desire it. Some individuals may feel pressure to exercise this option prematurely, missing potentially meaningful time, in order to assure their ability to use the prescription. Others, like Mr. T, may simply run out of time. Even specific provision, documented in a properly executed advance directive, does not supersede the legal

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safeguards. While a patient may take the medication via a feeding tube, it still must be administered by the patient to avoid risk of homicide charges and progression down a slippery slope to active euthanasia. Though legal in countries including the Netherlands, Belgium, Luxembourg, and Colombia, that concept remains untenable in the United States. Of note, the PAD laws do not specify what is to happen with unused PAD medications, raising questions about their use. While state reports indicate the number of patients who ultimately do not ingest the medication, no data has been reported regarding disposal.

20.8

Role of the Clinical Ethics Consultant

In the states that have adopted PAD, processes have been established that may not explicitly involve an institution’s Ethics Committee or clinical ethics consultant. However, as the consideration of Mr. T’s case suggests, ethical questions and conflicts may arise regarding patient capacity and voluntariness, physician obligations/nonabandonment, distinctions between suicide and PAD, alternatives to PAD, and barriers between PAD and euthanasia. The clinical ethicist may be consulted by a psychiatrist struggling with their role in PAD, or a primary care physician or specialist caring for a patient who requests assistance that the physicians feel they cannot provide or is not supported by their institution. Clinical ethics consultants may bear responsibility for PAD education and developing processes consistent with law or ethical guidelines. Any of these consults may raise ethical questions for the clinical ethicists themselves, result in moral distress or conflicts between personal beliefs and professional obligations. Though duty may call, clinical ethics consultants are among the healthcare professionals who can elect to opt out.

20.9

Conclusion

PAD appears to be beneficial to the small subset of individuals who qualify and elect to use it. However, ethical controversy remains and questions persist. The eligibility requirements are restrictive and time-consuming, precluding access for many patients. The limited number of participating healthcare professionals compound access difficulties and highlight the ethical conundrum the issue presents. For some PAD is an ethically justifiable personal choice for others an impermissible violation of ethical obligations. In California, the law includes a sunset provision, allowing for a multi-year experiment. Clinical ethics consultants may find themselves enmeshed in this debate as the impact of these laws become more evident and each state determines whether to embrace this practice or not.

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References American Medical Association. 2016. AMA Code of Medical Ethics, Opinion 5.7, Physician Assisted Suicide. http://www.ama-assn.org/ama/pub/physician-resources/medicalethics/codemedical-ethics/opinion2211.page, Google Scholar. Accessed 3 Jan 2020. Ault, A. 2017. Doctor Support for Assisted Death Rises, But Debate Continues. https://www. medscape.com/viewarticle/882334. Accessed 24 Jan 2020. Battin, M.P., A. van der Heide, L. Ganzini, G. van der Wal, and B.D. Onwuteaka-Philipsen. 2007. Legal Physician-Assisted Dying in Oregon and the Netherlands: Evidence Concerning the Impact on Patients in “Vulnerable” Groups. Journal of Medical Ethics 33: 591–597. https:// doi.org/10.1136/jme.2007.022335. Baxter v. State, 224 P.3d 1211, 2009 MT 449, 354 Mont. 234, 2009 Mont. LEXIS 695 (Mont. Dec. 31, 2009). Beauchamp, T.L., and J.F. Childress. 2009. Principles of Biomedical Ethics. Vol. 180–185. 6th ed, 216–219. New York: Oxford University Press. Cain, C.L., B.A. Koenig, H. Starks, J. Thomas, L. Forbes, S. McCleskey, and N.S. Wenger. 2018. Hospital Responses to End of Life Option Act: Implementation of AID in Dying in California. JAMA Internal Medicine 179: 985–987. https://doi.org/10.1001/jamainternmed.2018.8690. ———. 2020. Hospital and Health System Policies Concerning the California End of Life Option Act. Journal of Palliative Medicine 23 (1): 60–66. https://doi.org/10.1089/jpm.2019.0169. Epub 2019 Jul 12. Cholbi, M. 2017. Suicide. In The Stanford Encyclopedia of Philosophy, Edward N. Zalta (Ed.). https://plato.stanford.edu/archives/fall2017/entries/suicide/. Accessed 14 Jan 2020. Council on Ethical and Judicial Affairs. 2018. CEJA Report 5-A-18. https://www.ama-assn.org/ sites/default/files/media-browser/public/hod/a18-ceja5.pdf. Accessed 30 Jan 2020. Dear, J. 2019. The Doctors Who Invented a New Way to Help People Die. The Atlantic (January 22). https://www.theatlantic.com/health/archive/2019/01/medical-aid-in-dying-medications/ 580591/. Accessed 27 Jan 2020. Death with Dignity. Oregon Death with Dignity Act: Annual Reports. https://www. deathwithdignity.org/oregon-death-with-dignity-act-annual-reports/. Accessed 20 Jan 2020. Mayo, D.J. 1986. The Concept of Rational Suicide. The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 11 (2): 143–155. O’Rourke, M.A., M.C. O’Rourke, and M.F. Hudson. 2017. Reasons to Reject Physician Assisted Suicide/Physician Aid in Dying. Journal of Oncology Practice 13 (10): 683–686. Pecci, A.W. 2017. Poll: Many Doctors Have Wished a Patient Had a Right to Die. https://www. healthleadersmedia.com/strategy/poll-many-doctors-have-wished-patient-had-right-die. Accessed 24 Jan 2020. Pro-Con.org. 2019. State-by-State Physician-Assisted Suicide Statistics, January 28. https:// euthanasia.procon.org/state-by-state-physician-assisted-suicide-statistics/. Accessed 6 Jan 2020. Quill, T.E. 2007. Legal Regulation of Physician-Assisted Death—The Latest Report Card. New England Journal of Medicine 356 (May 10): 1911–1913. Shaner, M. 2016. Ethical Analysis for Physicians Considering the Provision of Life-Ending Medication in Compliance with the California End of Life Option Act. The Permanente Journal 20 (4): 116–121. https://doi.org/10.7812/TPP/16-048. Snyder, Sulmasy L., P.S. Mueller, and for the Ethics, Professionalism and Human Rights Committee of the American College of Physicians. 2017. Ethics and the Legalization of PhysicianAssisted Suicide: An American College of Physicians Position Paper. Annals of Internal Medicine 167 (8): 576–578. https://doi.org/10.7326/M17-0938. World Population Review, Death with Dignity States. 2019. http://worldpopulationreview.com/ states/death-with-dignity-states/. Accessed 3 Jan 2020. Yang, Y.T., and F.A. Curlin. 2016. Why Physicians Should Oppose Assisted Suicide. The Journal of the American Medical Association 315: 247–248.

Chapter 21

Medical Aid in Dying in Canada: Undertaking Clinical Ethics Consultations in a Rapidly Evolving Regulatory Landscape Benjamin Zolf and Udo Schuklenk

Abstract Canada’s relatively new medical assistance in dying regime embodies a rapidly shifting regulatory and legal landscape. Healthcare professionals, including clinical ethics consultants, should work to stay apprised of new developments not only in hospital policy but also in federal law. The patient eligibility criteria for medical assistance in dying are, at the time of this writing, undergoing Parliamentary review, and it is very likely that expansion of the criteria will follow shortly. This chapter, therefore, familiarizes clinical ethicists with some of the most important recent developments in the law and the events that precipitated them. It describes two case studies that challenge Canada’s patient eligibility policies for medical assistance in dying, demonstrate the role of Canada’s courts in the development of those policies, and illustrate the nature of the decisions that clinical ethicists must make in a Canadian context. It also discusses the challenge posed by the unwillingness of some institutions and individual physicians to participate in the provision of medical assistance in dying. Canada’s effort to balance physicians’ and institutions’ right to act according to their conscience has come into conflict with patients’ interests in receiving legally authorized care. The legal response to that conflict has left a substantial role for the discretion of clinical ethicists, who should be mindful of the need to prioritize patient care. Keywords Medical assistance in dying · Conscientious objection · Assisted dying legislation · Canada · Clinical ethics consultant · Eligibility · MAiD

The original version of this chapter was revised: The name of the second author was inadvertently misspelled which has been corrected now. The Correction to this chapter is available at https://doi. org/10.1007/978-3-030-91916-0_30

B. Zolf (*) · U. Schuklenk University of Toronto, Toronto, Canada © Springer Nature Switzerland AG 2022, corrected publication 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_21

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Objectives

1. To understand the consequences of a rapidly shifting regulatory and legal landscape of assisted dying in Canada. 2. To examine the impact on healthcare professionals, including clinical ethicists potentially involved in assisted dying requests. 3. To evaluate a patient’s eligibility for medical aid in dying. 4. To explore the consequences of conscientious refusals to provide assistance in dying by physicians and institutions.

21.2

Case one – Quadriplegia, Treatment Refusal, and “Natural” Death

Joseph is a competent 65-year-old patient with quadriplegia (see Downie and Bowes 2019). His condition developed after a car accident several years ago. He is otherwise in good health, and his death is no more foreseeable than anyone else’s. However, he sees his condition as unacceptable, and as involving a high level of psychological suffering. He decides to refuse regular turning, a process where healthcare practitioners move him every few hours in order to prevent pressure ulcers from developing on his body. As a result, the development of those ulcers becomes foreseeable in the short term. Since he will also refuse treatment for the infections that will predictably develop as a result, Joseph’s death is foreseeable to the extent that his primary care physician predicts his refusal of treatment will continue. Joseph clearly seems to meet the eligibility criteria for Medical Aid in Dying (MAiD), but the foreseeability of his death is a direct result of his refusal to accept any treatment and his desire to die or end his life or his suffering.

21.3

Introduction

In 2016, medical assistance in dying (“MAiD”) became legal under Canadian law. Eligibility for MAiD is restricted to adult patients who are capable of making healthcare decisions, and who have a grievous and irremediable medical condition that has made their death reasonably foreseeable. Currently, these criteria are undergoing legal challenges, and they are subject to a national public consultation by the government of Canada. This chapter discusses the impact of MAiD legalization and its rapidly evolving regulatory landscape on Clinical Ethics Consultation (CEC) in Canada. The two case studies are presented to exemplify some of the novel challenges clinical ethicists face in cases involving decisionally competent adult patients requesting MAiD. One of the challenges most relevant to the practice of CEC involves the evaluation of a patient’s eligibility for assisted dying. Clinical ethics consultants may also confront issues relating to their own conscientious beliefs, if, for example, their views on the moral acceptability of MAiD do not

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align with the policy of the institutions at which they work. This chapter explores both types of challenges. In Canada, healthcare is a provincial responsibility. At the time of writing no national or provincial guidelines for clinical ethicists exist regarding MAiD. Indeed, it is the case that in some hospitals the clinical ethics unit is responsible for managing MAiD requests, while in others they are not regularly involved or never involved at all. This variation is indicative of a methodology in flux in Canada in terms of MAiD policies and procedures, which is not surprising, since only a few years have passed since legalization.

21.4

Applying Eligibility Criteria

Legally, the statute that permits MAiD is included in the Canadian Criminal Code as an exception to the offenses of culpable homicide, aiding suicide, and administering a noxious substance (Criminal Code of Canada 1985). This exception is granted only when a set of eligibility criteria obtain, and although healthcare practitioners with “reasonable but mistaken” beliefs about a patient’s eligibility are protected from criminal liability, MAiD’s status as an exception to homicide reflects the fact that providing MAiD to patients without due diligence is homicide. Applying the legal criteria is not always easy, as they are sometimes open to broad interpretation or otherwise opaque, and they remain the subject of an ongoing public debate and government consultation, as well as legal challenges (Department of Justice 2020). Particular focus is on the questions of whether legally binding advance directives should be made permissible, whether mature minors should be made eligible for MAiD, and on the constitutionality of the ‘reasonably foreseeable’ standard. For example, it may not be obvious whether a patient’s death is reasonably foreseeable, or a patient’s opinion of which pain relief options are acceptable may seem (or actually be) unreasonable. Further, the eligibility criteria are not exhaustive instructions for all scenarios a clinical ethicist may encounter in dealing with patients’ requests for MAiD. Jocelyn Downie and Matthew Bowes present a lucid example of just such a scenario, which formed the basis for Joseph’s case: that of a hypothetical patient who makes their condition grievous and irremediable by refusing care (Downie and Bowes, p. 74). In order to receive MAiD, patients must be at least 18 years of age and capable of making medical decisions; have a “grievous and irremediable” medical condition; make a fully voluntary request for the procedure; and give consent after being informed of the available alternative courses of action, if any (Criminal Code, s. 241.2(1)). For a patient to be considered as suffering from a “grievous and irremediable” medical condition, they must have a “serious and incurable illness, disease or disability,” be in an “advanced state of irreversible decline in capability,” and experience physical or psychological suffering that they deem intolerable, which cannot be relieved under conditions the patient considers acceptable. At the time of this writing, their natural death must also be “reasonably foreseeable” (but see the recent Québec decision Truchon c. Procureur general du Canada, 2019 QCCS 3792). However, Bill C-7 is making its way through Canada’s federal parliament. If

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passed, it will remove reasonable foreseeability of natural death as a requirement for accessing MAiD (House of Commons of Canada 2020). It will remain up to attending physicians to determine whether patients are in an advanced state of irreversible decline. The same bill includes a provision for providing MAiD based on advance directives. What constitutes a “natural” death has not been discussed as much as these two controversies, i.e. reasonable foreseeability and advance directives, and has not been the focus of much, if any, legal review. As Joseph’s case demonstrates, it is ill-defined and has the potential to create fraught ethical and legal decisions. As currently constituted, Bill C-7 appears to obviate the need to consider whether a patient’s death is natural, since it provides paths to MAiD for patients with or without a reasonably foreseeable natural death. It will remain a completely open question whether patients who render their own condition grievous and irremediable should have access to MAiD. Clinical ethicists should be aware of this potential difficulty before it becomes legally controversial. As the law currently stands, a clinical ethics consultant asked to consult on Joseph’s case must determine whether the connection between his refusal and the predictability of his death renders the latter not “natural,” and, therefore, he is ineligible for MAiD, since one of the eligibility criteria is the foreseeability of a natural death. This would remain relevant if Bill C-7 passed as currently structured, because the bill creates separate eligibility criteria for patients with and without a reasonably foreseeable natural death. Clinical ethics consultants would have to determine which set of criteria to apply to a patient like Joseph. A clinical ethicist should also be concerned about whether his illness can be said to be “incurable,” since both the infections and pressure ulcers could easily be mitigated by treatment and would not be life-threatening if treatment were not refused. The MAiD eligibility criteria do not require that the patient’s incurable disease, illness or disability actually causes their natural death; only that it causes them intolerable suffering. Joseph seems to meet that requirement in virtue of his quadriplegia. Even so, a clinical ethicist would have to decide whether it is implicit in the criteria and in current best practices that a patient’s incurable disease, illness or disability actually plays a causal role in predictably bringing about their death in order to qualify the patient for an assisted death. The Criminal Code section on MAiD is silent on the parameters for a death to count as natural – the phrase “natural death” does not appear elsewhere in the Code, and it is not defined in the MAiD provisions (Downie and Bowes, p. 76). Downie and Bowes argue that Canadian case law surrounding the phrase does not offer a clear answer in the context of assisted dying, and that the only guidance that has been provided by the British Columbia College of Physicians and Surgeons suggests that deaths resulting from a refusal of care are “natural” in the context of MAiD eligibility evaluations (77–78). After observing a broad divergence in the definition of “natural” death among various other professionals, including coroners, they conclude that in an assisted dying context, the term is legally ambiguous. The same would apply to Joseph’s case. A clinical ethics consultant, therefore, would have to negotiate this legal ambiguity while keeping the patient’s wishes in mind. He or she might also take into consideration that legislative change relevant to the issue appears to be imminent in light of the Quebec Superior Court decision declaring this standard unconstitutional (Jessome 2019).

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Case Two – Julia Lamb and Reasonable Foreseeability

Part of the difficulty for CEC services in Canadian hospitals is to adjust the advice they render based on a rapidly changing legal and regulatory landscape. The real-life case of a spinal muscular atrophy patient named Julia Lamb illustrates both the nuances involved in some controversial applications for MAiD, and the rapidly shifting nature of the guidelines (Ireland 2017). This example draws on Lamb’s case to demonstrate the challenges a clinical ethicist could face in balancing a patient’s wishes with the specific wording of the currently evolving eligibility criteria. Andrea is a 45-year-old patient with Type 2 spinal muscular atrophy (“SMA”) with (medical) decision making capacity. She has never been able to walk, and her fine motor skills and upper body range of motion are deteriorating. Swallowing and breathing have become more challenging tasks for her than they were even 5 years ago. In the moderately foreseeable future she will not be able to breathe on her own, speak, or write. At that point, however, her death could still be a long time away. A ventilator would keep her alive indefinitely and round-the-clock care would ensure her needs are met. Andrea considers a life on a ventilator, in which she is unable to communicate, work or play, a life not worth living. She describes it as a state of intolerable suffering, and expresses a desire to be assisted in dying shortly before she reaches this point, so that she can properly say goodbye to her loved ones and friends. Her doctors are concerned that even once she has lost the ability to swallow, breathe, and communicate, Andrea’s death will not be reasonably foreseeable, since there is no reason to think she would die in the short-term if kept on a ventilator. If her death is not reasonably foreseeable, she would not be eligible for MAiD, even if her condition caused her to experience suffering she considers intolerable. An ethicist asked to consult on this case would have to balance the autonomy of a patient, who clearly wishes to die rather than endure an extended period of suffering, against ill-defined directives contained in a statute at the time of decision making. Since the statute exists as an exception to the crime of culpable homicide, it is easy to see how an ethicist might choose to err on the side of caution. The real-life Julia Lamb is younger than fictional Andrea and, anticipating this potential issue far in advance, filed suit against the government of Canada on the grounds that the requirement of reasonable foreseeability violated the rights of patients in her circumstances (Ireland). She dropped her case more than a year into litigation, after a medical expert from the government of Canada itself submitted that Lamb would, in fact, be eligible for an assisted death under the circumstances described above. A consensus has developed in the Canadian medical community, according to this expert, that “a patient’s death does not have to be imminent to count as reasonably foreseeable” (Grant 2019). As described above, it now appears that the Canadian government will jettison the requirement of reasonable foreseeability altogether, creating a subsection to the existing MAiD legislation that will grant access to MAiD for patients whose death is not reasonably foreseeable.

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This court challenge and its outcome resolved this particular case for clinical ethics consultants and others, but until Bill C-7 actually passes, the fact that reasonable foreseeability does not entail imminent death confuses the issue for other patients. Even if and when it does, patients whose death is not reasonably foreseeable will still be subject to the requirement that they are in an advanced state of irreversible decline in capability, and clinical ethicists would have to contend with applying that requirement to cases like Andrea’s. The example of Andrea illustrates how the lack of a clear directive for something as serious as the provision of MAiD has left clinical ethicists waiting for guidance from the courts, which tend to move more slowly than the needs of patients. Clinical Ethics Consultants are likely to end up in that position regardless of what happens to Bill C-7, and they should be prepared for that eventuality.

21.6

Clinical Ethics Consultants and Conscientious Disagreements

Despite support from an overwhelming majority of Canadians, the moral acceptability of medical assistance in dying remains contentious in Canada among some healthcare professionals. Indeed, even among healthcare professionals supportive of the decriminalization of assisted dying, some would refuse to provide it to eligible patients requesting this service on the grounds that it is incompatible with their own most deeply held moral views, or their religious beliefs. At the same time, doctors and nurse practitioners hold a societal monopoly on the provision of this service. Some of these professionals refuse to perform MAiD, on grounds of their own conscience, even if a patient meets all of the eligibility criteria. These healthcare workers are often referred to as ‘conscientious objectors’ or ‘conscientious refusers’. This discussion will focus on conscientious refusers as opposed to mere objectors who might object to a particular professional service but still provide it. Clinical ethics consultants may have to personally deal with conscientious refusals to provide professional services in two roles: as third parties asked to assist with decision making after a service refusal is announced by an objecting healthcare practitioner, and as refusers themselves to providing a consult in a case where a patient is seeking MAiD. This section will explain the current legal status of conscientious objection in Canada before discussing its application to clinical ethics consultation. Canada’s MAiD legislation does not make provisions for conscientious objection. Section 2(a) of the country’s Charter of Rights and Freedoms, however, guarantees a right to freedom of conscience and religion (Canadian Charter of Rights and Freedoms 1982). In the decision that overturned the ban on assisted dying, the Supreme Court of Canada acknowledged that this right entitles healthcare practitioners to refuse to participate in MAiD (Carter v. Canada (Attorney General) 2015, para. 132). The guidelines for how physicians are required to behave on issues of conscientious objection are provided by their provincial statutory regulatory

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bodies, such as Ontario’s College of Physicians and Surgeons (“CPSO”). In Ontario, Canada’s most populous province, practitioners who object to the provision of MAiD must provide patients seeking it with an “effective referral” (CPSO 2020). This referral is defined as “taking positive action to ensure the patient is connected to a non-objecting, available, and accessible physician, other healthcare professional, or agency.” Practitioners in Ontario can refuse to provide a service to a patient, but they must ensure that someone who is available and accessible to the patient will. This “effective referral” policy has been contested in the courts by religious physicians’ groups, but the College policy was upheld by judicial review. In larger hospitals and in major urban centres, cases that involve conscientiously refusing physicians should not pose a substantial puzzle to clinical ethicists. The answer is simply to connect the patient with a practitioner who does not object. Cases where a non-objecting practitioner is not immediately available are more complicated, and these can easily arise in a country as large and sparsely populated as Canada. The CPSO’s guidelines on effective referral do not specify what should happen when it is not possible to connect the patient with another physician, as the policy requires. Patients who are eligible for MAiD are often difficult, if not impossible, to transport safely (Blackwell 2016). Clinical ethics consultants must therefore confront the problem of weighing an eligible patient’s interest in receiving a legally sanctioned form of medical care against a practitioner’s interest in keeping their conscience intact. In the absence of legal or organizational guidelines on how to achieve this balance, they are left with their own moral compass and to their own devices. Under these circumstances, patients’ interests should come first. Their wellbeing is the primary responsibility of the healthcare providers attending to them; and the conscientious beliefs of the latter should not take priority (Schuklenk 2018). In some contexts, ensuring patients are effectively referred to non-objecting physicians may mean struggling against one’s own institution. Faith-based hospitals, publicly funded as they are, tend to ban MAiD from being carried out on their premises, regardless of individual physicians’ or nurses’ views (see e.g. St. Michael’s Hospital 2019). Patients eligible for MAiD who requested this service have encountered difficulties both with receiving the assessment of their eligibility, as well as with their transfer to secular institutions, and faith-based hospitals have even been accused of deliberately delaying those transfers (Caruk and Hoye 2017). Clinical ethicists in faith-based institutions have another factor to consider in weighing interests; namely the institution’s own policy on the provision of MAiD. If we assume two possible scenarios, namely clinical ethicists supporting their institutional policies, as well as those not supportive of them, it appears to be the case that their practical response ought to be the same, which is to inform patients of their options and facilitate a non-directive conversation with the patient as well as the attending healthcare workers. It is the clinical ethics consultant’s responsibility to advise patients of the institutional policies as they might be in conflict with patient rights. This advice should not be diluted by a desire to promote the institution’s values and should be tailored to the needs and desires of the patient. They need to be mindful of the possibility that the institution might exert influence on a patient in line with its own views, and they ought to be willing to provide impartial professional advice if that happens. The role of a clinical ethicist is not to function as a partisan

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promoter of their employer’s value pronouncements but as an independent instance tasked with facilitating informed patient decision making. The presence of clinical ethicists who put their patients’ interests first could have prevented the issues that arose in the patient transfers described above.

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Conclusion

In Canada, MAiD remains the subject of intense public and legal scrutiny, in spite of its popularity and its legalization. Clinical ethics consultants might find themselves in publicly funded sectarian healthcare institutions opposed to facilitating MAiD on their premises. They ought to remain focused on facilitating informed patient decision making even if, on occasion, that leads to patient decisions that are in conflict with the healthcare institution’s professed ideological commitments. Clinical ethicists dealing with MAiD cases will encounter vague criteria in assessing whether patients qualify for the procedure. Those criteria are part of a rapidly shifting legal and regulatory landscape, of which consultants must remain aware if they are to discharge their duties with the care required for the provision of assisted dying. No national or provincial policy exists to govern the behaviour of clinical ethics consultants where MAiD is concerned, and the policies of hospitals with regard to clinical ethicists’ involvement in MAiD cases varies. Clinical ethics consultants in Canada would do well to remain abreast of ongoing legal cases and forthcoming regulatory policies for guidance on the matter.

References Blackwell, Tom. 2016. B.C. Man Faced Excruciating Transfer After Catholic Hospital Refused Assisted-Death Request. National Post, September 27. https://nationalpost.com/news/canada/bc-man-faced-excruciating-transfer-after-catholic-hospital-refused-assisted-death-request. Accessed 28 Jan 2020. Canadian Charter of Rights and Freedoms, Part I of the Constitution Act, 1982. Carter v. Canada (Attorney General), 2015 SCC 5. Caruk, Holly, and Bryce Hoye. 2017. Waiting to Die: Winnipeg Man Says Faith-Based Hospital Delayed Access to Assisted Death. CBC News, October 5 https://www.cbc.ca/news/canada/ manitoba/misericordia-assisted-dying-maid-1.4371796. Accessed 28 Jan 2020. Consultations on Medical Assistance in Dying (MAID) Eligibility Criteria and Request Process. 2020. Department of Justice. https://www.justice.gc.ca/eng/cons/ad-am/index.html. Accessed 20 Jan 2020. CPSO Policy on Medical Assistance in Dying. https://www.cpso.on.ca/Physicians/PoliciesGuidance/Policies/Medical-Assistance-in-Dying. Accessed 28 Jan 2020. Criminal Code of Canada. 1985. RSC 1985, s. 227 (1). Downie, Jocelyn, and Matthew Bowes. 2019. Refusing Care as a Legal Pathway to Medical Assistance in Dying. Canadian. Journal of Bioethics 2: 73–82, at 73.

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Grant, Kelly. 2019. B.C. Woman Drops Challenge of MAID Law After Learning She Qualifies for Assisted Dying. The Globe and Mail, September 19. https://www.theglobeandmail.com/canada/ article-bc-woman-challenging-reasonably-foreseeable-clause-in-maid-law/. Accessed 28 Jan 2020. House of Commons of Canada. Bill C-7: An Act to Amend the Criminal Code (Medical Assistance in Dying). https://www.parl.ca/DocumentViewer/en/43-1/bill/C-7/first-reading. Accessed 15 Nov 2020. Ireland, Nicole. 2017. Medically Assisted Death Has Been Legal for Almost a Year, But Another Battle Is Brewing. CBC News, April 20. https://www.cbc.ca/news/health/medically-assisteddying-court-case-julia-lamb-1.4067629. Accessed 28 Jan 2020. Jessome, Jayde. 2019. Canada: Truchon v. Procureur Général Du Canada: Superior Court Of Quebec Finds Limiting Access To Medical Assistance In Dying (“Maid”) To End of Life Unconstitutional. Mondaq October 21. http://www.mondaq.com/canada/x/855424/Healthcare/ Truchon/v/Procureur/Gnral/Du/Canada/Superior/Court/Of/Quebec/Finds/Limiting/Access/To/ Medical/Assistance/In//Dying/Maid/To/End/Of/Life/Unconstitutional. Accessed 28 Jan 2020. Schuklenk, Udo. 2018. Conscientious Objection in Medicine: Accommodation vs Professionalism and the Public Good. British Medical Bulletin 126: 47–56. See, e.g., Toronto’s Unity Network: St. Michael’s Hospital. 2019. Patient Care: Medical Assistance in Dying. https://www.stmichaelshospital.com/programs/maid.php. Accessed 28 Jan 2020. Truchon c. Procureur général du Canada, 2019 QCCS 3792.

Chapter 22

Physician Assisted Suicide and Euthanasia in the European Context Charlotte Wetterauer and Stella Reiter-Theil

Abstract Assisted suicide is one of the most controversial topics in clinical ethics. The coexistence of tolerance for assisted suicide and the need to provide suicide prevention creates a tension between underlying values, especially in patient care. Moving within this tension can create ethical uncertainty among healthcare professionals. In Europe, no uniform legal regulation for assisted suicide exists. Rather, there are numerous different regulations, with Switzerland occupying a special position with its liberal provisions. In this chapter, in addition to outlining the different regulations – also in comparison to North America – a cased study on physician assisted suicide from clinical ethics consultation (CEC) illustrates how Clinical Ethics Support (CES) can help clinical staff to tackle the difficult issues involved. The necessity of balancing ethical principles plays an overriding role. National guidelines are instrumental for clarification, but they also reflect normative tensions and can themselves generate uncertainty, as is illustrated by the example of a national guideline issued in Switzerland. The authors consider institutional policies and CES as even more important as long as the societal controversy is not resolved through legislation. Keywords Assisted suicide · Clinical ethics support · Ethics consultation · Autonomy · Suicide prevention

C. Wetterauer (*) Institute of Biomedical Ethics and History of Medicine, University of Zurich, University Hospital Basel and University Psychiatric Clinics Basel, Basel, Switzerland e-mail: [email protected] S. Reiter-Theil Professor (em.) of Medical and Health Ethics, University Basel, Basel, Switzerland Department of Clinical Ethics, University Hospitals Basel, Basel, Switzerland e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_22

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Objectives

1. To inform an international/English speaking audience about the situation in Europe. 2. To highlight differences within the European context, e.g. due to legislation, focusing on physician assisted suicide (AS) in Switzerland. 3. To illustrate how CES may help clinical staff to tackle difficult issues. 4. To formulate an outlook: summarize open questions and give suggestions for further research in this area.

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Case Study: Dealing with a Suicidal Patient’s Reported “Wish to Die”

Clinical teams of various hospitals (including inpatient psychotherapy) seem to have reached their therapeutic limits: they feel perplexed and unable to help a certain patient who is suffering from severe chronic pain. The man, in his late fifties, had requested an attestation of decisional capacity required by a Swiss right-to-die society (RTDS) before they would give him assistance to commit assisted suicide (AS). After scrutiny of the documentation provided by the previous specialists it is assumed that the patient’s history (including, inter alia, surgical, neurological, and psychosomatic complications) and experiences with healthcare led to his repetitive disappointment and loss of trust. The therapeutic alliance of the available, more recently involved therapist (but also other caregivers), has been challenged by the patient’s insistence on his request and the impossibility of building consensus on therapy goals or a potentially promising transfer to some other facility (e.g. for educating the patient in coping with chronic pain). The respective institution’s leadership was, in fact, not willing to accept the patient again due to the burdens that his management had triggered for the staff and claiming that continuing their therapeutic efforts would be futile. On closer exploration by the ethics consultant, the patient’s response is that he might prefer to live if his permanent pain were eased. Consequently, the ethics consultant engages in finding another hospital/specialty willing to open his record again and to address his pain. After another sequence of diagnostics and treatment attempts and only partly successful pain control, the patient receives the desired attestation of decisional capacity from an external palliative care unit, i.e., the prerequisite for obtaining a lethal dose of Natrium-Pentobarbital (NaP) and accompaniment into death by the RTDS. After dismissal and as a further result of the ethics consultation his primary care and home nursing situation was improved. Careful follow up proves that he continues to live, despite varying degrees of pain, after 4 years saying that he prefers to postpone committing AS for as long as possible, in order to avoid burdening his next of kin.

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In accordance with the Swiss law tolerating AS under certain circumstances and the ethics policy on AS at the University Hospital Basel, the patient’s wish to find support for an AS was respected and handled with empathy, while practical in-house assistance to commit suicide was explicitly denied. Following the prerequisites of the relevant Swiss guideline (SAMS 2018), available treatment options were evaluated and tried; also, an evaluation of decisional capacity was provided by an external service. Any attempt to treat the patient as a suicidal person in the clinical sense met with the patient’s resistance and he declined – after his experiences with inpatient psychosomatics – all kinds of “psycho”-services. In retrospect, the consult turned out to have contributed to several positive outcomes: (1) the patient obtained an attestation of his decisional capacity (for committing AS); (2) the clinical situation was moderately improved, and (3) the previously involved clinicians were supported in coping with the problems. But above all, (4) the patient has continued to prefer staying alive, as long as he can with the option to decide otherwise (Reiter-Theil and Wetterauer 2019).

22.3

Europe: A Continent with a Wide Range of Frameworks

AS is regulated quite differently across Europe and also compared to North America. Most European states forbid AS, especially the Eastern countries such as Austria, Hungary, Poland and Slovenia1 as well as western countries like France or the United Kingdom (UK). Switzerland has gained the reputation of being unique with regard to the practice and tolerance of AS. However, the Swiss approach is not only unique in comparison to less liberal regulations, but also compared to the Be-Ne-Lux states (Belgium, The Netherlands and Luxemburg) who legalized both physician assisted suicide and euthanasia2 (the latter is prohibited in all other European countries including Switzerland). Only Switzerland allows lay RTDSs to organize AS involving physicians to play a marginal or merely organizational role: attesting decisional capacity and prescribing a lethal dose of NaP to the patient whereas the personal accompaniment into the dying process is overtaken by a non-clinical member of the RTDS (Hurst and Mauron 2003; Fischer et al. 2009; Reiter-Theil et al. 2018; Reiter-Theil 2006). Swiss RTDS3 are numerous and diverse and consider themselves explicitly as lay volunteers, rather than medical and

E.g. for Austria § 78 Austrian Criminal Code See for the controversial discussion about euthanasia for psychological suffering in Belgium: https://www.noeuthanasia.org.au/belgian_professionals_speak_out_against_euthanasia_for_psy chological_suffering 3 The two most famous RTDS in Switzerland are EXIT (https://www.exit.ch/) and DIGNITAS (www.dignitas.ch/). 1 2

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professional associations. According to its own statements, the RTDS Exit accompanied 905 people in Switzerland to suicide in 2018 – a new high.

22.4

Recent Development in Germany: Back to Tolerance?

Fundamentally, AS is unpunished in Germany. Because suicide in Germany is not a criminal offence, the assistance is not either. As a response to increasing activities of RTDS offering similar service as in Switzerland, Germany adopted a new paragraph 217 of the German criminal law code in 2015 – which was abandoned in the meantime - prohibiting the practice of AS in a “commercial” way. Suicide allowance was only not punishable if the person with the death wish ultimately causes his/her own death and the one who assists in suicide (“die helper”) does not act in an organized and repetitive way. The basic impunity of the AS was reserved for individual cases. According to the justification of the law, the aim was to prevent “getting used to” and social “normalization of” AS. As a matter of fact, even this seemingly clear legal regulation led to uncertainty in practice as recent constitutional court cases show. Is it “commercial” practice if physicians help more than one patient to commit suicide? On February 26, 2020, the Constitutional Court answering several complaints from individuals and organizations decided that the same law is contradicting the liberal German constitution and declared paragraph 217 of the German Criminal Law Code void; the Constitutional Court also affirmed the validity of the individual’s right to self-determined dying. According to the Constitutional Court’s President Voßkuhle, the state may not restrict this right, e.g. to the period at the end of life or other conditions; the state, however, is permitted to make efforts to convince a person to stay alive offering help or asking to reconsider the wish to die.4

22.5

The Very Particular Situation in Switzerland – Controversy About Guidelines

In Switzerland the legal basis for AS is finally regulated by the Swiss Criminal Code (Art. 115 Swiss Criminal Code).5 Immunity from prosecution for assisting a person in committing requires the person with death wish to have: (1) decisional capacity6 and (2) authority of action, i.e. control. The actions leading to suicide and death need to be performed fully by the patient. Assisting somebody to commit

4

See German Federal Constitutional Court 2nd of February 2020: https://www. bundesverfassungsgericht.de/SharedDocs/Pressemitteilungen/DE/2020/bvg20-012.html 5 Bundesgerichtsentscheid (BGE) 136 II, p 415. 6 See Swiss Academy of Medical Sciences (SAMS): Assessment of capacity in medical practice (2019)

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suicide must be free from interest motives. In addition to this legal norm, court decisions and national ethics recommendations concretize the legal provisions. According to a Federal Court decision,7 NaP may be prescribed in lethal dose by MDs. An appropriate medical justification of AS is to be guaranteed by prescription requirement; this includes diagnosis, indication, patient informed consent including conversation, attested decisional capacity, discussion of treatment options. By establishing this list of criteria, a near equivalent to a regulation of physician assisted suicide is created, like the one in Oregon without restricting the practice clearly to the medical profession. Furthermore, this Federal Court decision points out that the prescription of a lethal NaP dose is underlying the medical association’s professional code of conduct, especially the medico-ethical guideline of the Swiss Academy of Medical Sciences (SAMS) (Reiter-Theil et al. 2018). In 2006, when the court decision was made, one of the central SAMS guideline criteria stated that the patient’s end of life had to be near. The revised guideline of 2018, now named “Management of dying and death” (SAMS 2018), dropped the “medical” condition replacing it with “The symptoms of disease and/or functional impairments are a source of intolerable suffering for the patient”. The following criteria must also be met: 1. The patient has capacity in relation to AS. It must be documented that incapacity has been carefully excluded by the physician. If a mental disorder, dementia or another condition frequently associated with lack of capacity is present, capacity must have been assessed by an appropriate specialist. 2. The patient’s desire is well-considered, not due to external pressure, and enduring. If there is evidence of a problematic relationship of dependency, careful consideration must have been given to its possible influence on the desire for suicide. 3. Medically indicated treatment options and other types of assistance and support have been sought and have proved ineffective or are rejected as unacceptable by the patient, who has capacity in this regard. 4. The patient’s desire not to continue living in this situation of intolerable suffering is comprehensible for the physician on the basis of the previous history and repeated discussions, and the physician finds it justifiable to perform assisted suicide in this particular case. The abandonment of the criterion “assumption that the end of life is near” and its replacement by “unbearable suffering” as a justification for the admissibility of the suicide allowance triggered controversy. Moreover, the fact that the SAMS guideline newly presented decisional capacity as the leading criterion did not silence the debate. Although challenges of capacity assessment are well documented (Hermann et al. 2014) capacity is the key criterion to respect patient autonomy. Critics emphasize that unbearable suffering could include “diagnoses” such as “old age” or “fatigue”, for which there was no political, social, and ethical consensus as to 7

BGE 133 I 58, p 59, 71.

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whether these may serve as good reasons for claiming allowance of AS. The Swiss Medical Association (FMH: Foederatio Medicorum Helveticorum) decided in 2018 that the revised SAMS guideline should not be included in the annex to the FMH Code of Conduct as expected. Adopting the SAMS guidelines in the FMH Code of Conduct would raise the SAMS guidelines to the level of professional code and thus lead to direct, internal, i.e. association, legal liability for the members, i.e. the majority of MDs in Switzerland. The FMH based its negative decision on the fact that the guidelines define “unbearable suffering” as a prerequisite for allowance of AS instead of a medical condition near the end of life. “Unbearable suffering” was rejected as an indefinite legal term increasing legal uncertainty among the medical profession. The non-inclusion in the code of conduct created an open situation, the effects of which on practice are currently still unclear. The recent version of the SAMS guideline has brought the patient’s decisional capacity and, thus, the autonomy further into the foreground. However, no doctor can be legally or ethically obliged to assist with suicide. According to the medical code, physicians do not have to take any medical action that they cannot reconcile with their conscience. Even according to the revised SAMS guideline the doctor freely decides whether to get involved in AS. At the same time, suicide prevention has been practiced in Switzerland in the highly developed and institutionalized medical system, including psychiatric and psychotherapeutic care. Thus, very different options exist for responding to suicide wishes expressed by patients: on the one hand, crisis intervention or further treatment with the aim of preventing suicide, on the other hand, the more or less direct participation in suicide in the sense of AS. This coexistence contributes to difficulties arising in patient care, such as moral conflicts between medical specialists at the bedside or disagreement about the ethical or legal assessment of cases with the result of tensions between specialists and the affected patients and relatives (Reiter-Theil et al. 2018).

22.6

Ethics Consultation and Policies for Orientation

Guidelines and legal court decisions can provide guidance but may not be precise and directive enough for decision making in individual cases which is where ethics consultation and policies come into play (Reiter-Theil and Schürmann 2016; Wasson et al. 2015). The conflict regarding whether it is right to respect a patient’s wish to seek assistance in committing suicide or rather to respond by trying to convince the patient to continue life, is one of the thorny issues not only of healthcare professionals directly involved with the patient: The conflict reaches the realm of ethics consultation, and the clinical ethics consultant has to address diverging values and views. In addition to offering acute prospective ethics consultation, two ethics policies were initiated against the background of noticeable uncertainty for the University Hospital Basel (USB); both policies are described and discussed at length elsewhere (Reiter-Theil et al. 2018). As “ethics policies”, they should be evaluated according to

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their objectives (Winkler 2005); their primary value lies in their contribution to clarification, especially of how to proceed in a difficult situation. Policy 1 on AS aims at preventing ethical conflict by formulating a consistent and binding attitude for all hospital staff members towards AS, but cannot eliminate the persisting societal controversy on AS. Policy 2 on suicide prevention provides a clear frame of reference and practical advice most helpful for nurses who are most often the first to notice a patient’s suicidal ideas at the bedside. The policies should offer ethical support for the concrete handling of patients’ death wishes in the institution and consider both aspects: be it respect and tolerance regarding a patient’s wish for AS on the one hand, and / or the determination to offer help and prevent harm by practicing suicide prevention. In addition to ethics consultation such policies on complex ethical questions help in formulating an ethical orientation that is binding for all employees of the institution.

22.7

Outlook: Thorny Issues Persisting

Throughout Europe, AS is a matter of public debate. On the one hand, the need to respect patient autonomy, especially at the end of life, is emphasized, and on the other hand the obligation to provide help and prevent suicide also exists. The coexistence of tolerance for AS and the necessity to provide suicide prevention create a tension between the underlying values; it may also trigger ethical uncertainty among healthcare professionals. This is a thorny issue not only for the practitioners, but also for the clinical ethics consultants: When does a patient deserve respect, or even support, for the wish to die by terminating his or her life, and when is it the primary duty to hinder a person from committing a suicidal act – and how should this be done? Regarding the role of the ethics consultant questions arise about finding the appropriate attitude between neutrality and articulating certain values in relation to a case (Reiter-Theil 2009). Questions such as these highlight the value-laden nature of suicide that does not allow for a simple answer. Obviously, legislation in European countries is manifold and contradictory; in some countries, legislation has not yet produced consistent solutions. National guidelines might play an important role in clarification, but they too mirror the normative tensions. As long as societal controversy is not resolved by legislation, there is, we suggest, a need for pragmatic support to foster humane problem solving in patient care, e.g. by clinical ethics consultation and policies. In addition to national (ethics) guidelines, institutional ethics policies can provide further assistance for relevant situations. If a patient in the hospital expresses his wish to commit suicide, the (professional) caregivers can perceive this wish in very different ways: as an obligation to save him through crisis intervention or as a call to respect his self-determination, or ideally, a combination of both. Such policies formulate the institution’s position and thus facilitate further steps. In Switzerland, where, unlike in other countries, RTDS (lay people) offer AS, there is still some state control, namely through the doctor’s reservation for the issuance of NaP, which must be based on a medical examination. This requirement

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shall ensure that an MD is involved in the decision-making and preparation process for each suicide accompanied by medicinal or narcotic drugs. It is astonishing in this context that the actual companions through the dying process who, on behalf of the lay organization, hand over the NaP to those who are willing to die, are generally medical laypersons. No medical participation is required for this step. In Germany, it remains to be seen how the current law and the most recent Constitutional Court judgment can be reconciled for the good of those who wish to rely on the individual’s right to self-determination through AS. As long as restrictive European countries maintain their frameworks, the appeal of Switzerland as a destination for death tourism could remain.

References Fischer, S., C.A. Huber, M. Furter, L. Imhof, R. Mahrer Imhof, C. Schwarzenegger, S.J. Ziegler, and G. Bosshard. 2009. Reasons Why People in Switzerland Seek Assisted Suicide: The View of Patients and Physicians. Swiss Medical Weekly 139 (23–24): 333–338. smw-12614. Hermann, H., M. Trachsel, C. Mitchell, and N. Biller-Andorno. 2014. Medical Decision-Making Capacity: Knowledge, Attitudes, and Assessment Practices of Physicians in Switzerland. Swiss Medical Weekly 144: w14039. https://doi.org/10.4414/smw.2014.14039. Hurst, S.A., and A. Mauron. 2003. Assisted Suicide and Euthanasia in Switzerland: Allowing a Role for Non-physicians. BMJ 326 (7383): 271–273. https://doi.org/10.1136/bmj.326. 7383.271. Reiter-Theil, S. 2006. Ärztliche Beihilfe zum Suizid oder “Laienhilfe”? Ein Vergleich Zwischen der Schweiz, Oregon und den Niederlanden. In Vorgänge Nr. 175 Sterben und Selbstbestimmung, 117–135. Berlin: Humanistische Union. Reiter-Theil, S. 2009. Dealing with the Normative Dimension in Clinical Ethics Consultation. Cambridge Quarterly of Healthcare Ethics 18 (4): 347–359. https://doi.org/10.1017/ S0963180109090550. Reiter-Theil, S., and J. Schürmann. 2016. The “Big Five” in 100 Clinical Ethics Consultation Cases. Reviewing Three Years of Ethics Support in Two Basel University Hospitals. Bioethica Forum 9 (2): 12–22. Reiter-Theil, Stella, and Charlotte Wetterauer. 2019. Ethics of the Psychotherapeutic Alliance, Shared Decision Making and Consensus on Therapy Goals. In The Oxford Handbook of Psychotherapy Ethics, ed. Manuel Trachsel, Şerife Tekin, Nikola Biller-Andorno, Jens Gaab, and John Z. Sadler. Oxford University Press. Reiter-Theil, S., C. Wetterauer, and I.A. Frei. 2018. Taking One’s Own Life in Hospital? Patients and Health Care Professionals Vis-a-Vis the Tension between Assisted Suicide and Suicide Prevention in Switzerland. International Journal of Environmental Research and Public Health 15 (6). https://doi.org/10.3390/ijerph15061272. SAMS. 2018. Management of Dying and Death. Wasson, K., E. Anderson, E. Hagstrom, M. McCarthy, K. Parsi, and M. Kuczewski. 2015. What Ethical Issues Really Arise in Practice at an Academic Medical Center? A Quantitative and Qualitative Analysis of Clinical. Ethics Consultations from 2008 to 2013. HEC Forum 2015: 1–12. Winkler, E.C. 2005. The Ethics of Policy Writing: How Should Hospitals Deal with Moral Disagreement About Controversial Medical Practices? Journal of Medical Ethics 31 (10): 559–566. https://doi.org/10.1136/jme.2004.011023.

Chapter 23

Pediatric Ethics Issues and Clinical Ethics Consultation in the United States D. Micah Hester

Abstract Medical care for children poses a challenge that is rarely experienced in adult medical care. The pediatric patient is under the authority of someone else, and they are rarely authorized to make the decisions that determine whether or not those procedures and interventions will take place. Further, most children follow a developmental process that leads them to the maturity of adulthood, and their development begins to raise the issue of where and when, along this process, a person should have the authority to take over decision making. These facts create a unique moral space for pediatric medicine. All medical care aims at benefiting patients. What constitutes “benefit” for any particular patient, however, can be a struggle to determine. At the same time, “Who decides on benefit?” has equal moral weight. In the United States, we have come to see that in adult care autonomous adults are able to decide what is of benefit to themselves. The landscape is different in pediatrics. In fact, in pediatrics there is a presumption for parental authority over the decisions of their children. Pediatric decision making and parental authority, then, is governed by important moral precepts—the Best (or, at least, Reasonable) Interests Standard and the Harm Principle. As children mature, determining how robustly they should participate and even when or if they should have the authority to make their own healthcare decisions must be addressed, and precepts like the “mature minor doctrine” should be considered. Keywords Parental authority · Best interests standard · Zone of parental discretion · Harm principle · Mature minor doctrine · Assent · Pediatric · Ethics

D. M. Hester (*) Department of Medical Humanities & Bioethics, University of Arkansas Medical Sciences & Arkansas Children’s Hospital, Little Rock, AR, USA e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_23

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Objectives

1. Recognize how pediatric ethics differs from adult-care ethics. 2. Understand the role of parental authority in pediatric decision making. 3. Identify how ethical concerns arise across the lifespan of minors, from neonates to teenagers. “Pediatrics does not deal with miniature men and women, with reduced doses and the same class of disease in smaller bodies, but . . . has its own independent range of horizon.” Abraham Jacobi

23.2

Case One

Bobby’s family had just moved to town from another state, and they wanted to establish care with a pediatrician. So, Bobby was brought to meet Dr. Johnson at a nearby pediatric clinic. In looking over Bobby’s medical records, Dr. Johnson cannot find an immunization record and asks where it might be. Bobby’s mom explains that they have not had him immunized. After he was born, they did their own research and became concerned that the medications could cause significant problems, and they also heard from their minister than some of the vaccines were derived from fetal tissue. Dr. Johnson explained that there really was not any evidence that vaccines cause long-term problems and the use of fetal tissue was in older versions of vaccines, but no longer in the current versions. Bobby’s parents still declined the immunizations, but this remained concerning to Dr. Johnson since Bobby remained unprotected from diseases that could be significantly harmful if he ever contracted them.

23.3

Introduction

Medical care for children poses a challenge that is rarely experienced in adult medical care. The pediatric patient is, from the beginning of his/her life, under the authority of someone else, and while the medical procedures and interventions proposed for children happen to them, they are rarely authorized to make the decisions that determine whether or not those procedures and interventions will take place. Further still, most children follow a developmental process—physically, cognitively, and psychologically—that leads them to the maturity of adulthood, however defined, and their development begins to raise the issue of where and when, along this process, a person should have the authority to take over decision making. These facts give pediatric medicine an “independent range of horizon,” and further, a unique moral space.

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Table 23.1 Adults v. Pediatric—Differing ethical presumptions (Hester 2012) Adult-care ethical presumptions Presumption of patient autonomy • Presumption of maturity/ownership of values • Presumption of full accountability • Ethically: Presumption of obligation to respect • Presumption of family insight into the patient’s values • Greater potential for conflict between respecting autonomy and providing “benefit”

Pediatric-care ethical presumptions Presumption of patient incapacity • Presumption of patient immaturity/inno cence • Presumption of developmental account ability • Ethically: Presumption of need to protect • Presumption of parental authority over their child’s values development • Greater potential for conflict between parental authority and avoiding harm

All medical care aims at benefiting patients, even if the only benefit that can be provided is comfort unto death. What constitutes “benefit” for any particular patient, however, is a constant struggle to determine. And while the answer to that question matters, what also matters morally is an answer to the question, “Who decides on benefit?” In the United States, we have come to answer the former question by means of the latter, and we have come to see that in adult care autonomous adults are able to decide what is of benefit to themselves. However, the landscape is different in pediatrics. As Table 23.1 shows, while the presumption leans towards the individual authority of the patient in adult care, in pediatrics, the presumption runs in a different direction. What Table 23.1 begins to indicate is that pediatric ethics operates in a different moral space from that of adult ethics. Bobby’s case demonstrates an important and persistent tension between an authoritative determination by parents about what is best for their child and a clinical determination by a physician about what is medically beneficial to the child. What, then, should be done in the face of this tension, and specifically, how should a clinical ethicist approach these kinds of issues?

23.4

The Responsibility of Parents

In the US, there is a strong legal presumption that parents have the right to make decisions for their own children.1 Ethically, however, we often use the language of parental responsibility. There is a long history of philosophical debate about the concept of “rights,” but to oversimplify, if we see rights as personal legal and moral

1

Nota Bene: the parental right (or authority) to make decisions should not be confused with the oftused but mistaken concept of “parental autonomy” (cf. Ross 1998, 2019). Given that “autonomy” is the concept of “self-determination,” the only sense that a phrase “parental autonomy” can make is if we are talking about parents making decisions about themselves as parents. Parents making decisions about their children are not exercising “autonomy” but “authority.”

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entitlements, they can be acted upon or not at the discretion of the person who holds them. Responsibilities, however, are expectations—by way of someone’s social role or through statutory authority—placed upon a person. Responsibilities, therefore, have a stronger moral force than rights—rights can be exercised at will; responsibilities should be fulfilled. So, while we might debate what constitutes a good decision, what is not debated is that parents are not simply allowed to make good decisions for their children, the are expected to make good decisions for their children. They should demonstrate that they are responsible as parents. One of those responsibilities is to make important judgments for and about their children, while their children lack the robust ability to do so for themselves. Traditionally, to act responsibly, a parent is expected to make decisions for his/her child based on what is in the child’s “best interest” (Buchanan and Brock 1990; Kopelman 1997). The concept of “best interest” is ubiquitous in medical care, for both children and adults, and whether or not parents discharge this obligation and what constitutes discharging it properly is the point of some controversy in healthcare.

23.5

Deciding for Children: Two Moral Concerns

Clinical ethicists can help navigate this controversy in specific cases through careful attention to the nuances of the pediatric moral space while addressing two common moral concerns: 1. Who is best able to determine what should be done? 2. What criteria should be used to determine what should be done, and are there limits to the use of these criteria?

23.5.1 Who Decides? While there is an ethical and legal presumption for parents as legitimate decision makers, it is not clear that this should always be the case. Some medical decisions are complex; some patient conditions are tragic and some family situations are difficult. Parents may not understand what is needed and why; some parents may be struggling with emotions and grief; some parents may have conflicts of interest (whether money or time or other familial needs). Under such circumstances physicians often have valuable experience concerning certain conditions and should be impartial to adjudicate the well-being of the child. As such, it can be challenging to determine which party is best positioned to make decisions for a child and why. The case of Maria illustrates these concerns well: Maria was born at 28 weeks with a significant omphalacele and grade III/IV brain hemorrhages. Now 30 days into her care in the NICU, the healthcare providers believe that their efforts are

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prolonging Maria’s suffering for no good ends, since they believe she will never leave the unit alive. Her parents, on the other hand, say that Maria has defied the odds all along and that she is a “fighter” who has shown she wants to continue to live. Unfortunately, Maria’s case is hardly unique. Similar concerns and conflicts arise with some infants who have Trisomy 13 or 18 or others who are born extremely prematurely. Whether, genetic, congenital, or post-natal, severe impairment in very young children is devastating to parents and tragic to healthcare professionals. Making the best decisions for these children is not easy because it is not clear on its face what “best” means for any particular child, especially children who start their lives with significant physiological challenges. In Maria’s case, for example, neither parents nor providers want Maria to live with suffering and pain because of a severe impairment. The providers, given their experiences (not only the knowledge but the unconscious biases that arise from them) are led to consider whether death might be better than life for Maria, and they question their complicity in continuing a life that they believe experiences more harm than benefit. Yet, her parents view the situation quite differently. To them, Maria is a “precious gift from God,” and so long as she is alive, they will fight for her life the way they believe she fights for her life. They fail as parents, in their mind, if they do not protect her from death. Clinical ethicists must navigate these challenging concerns by remaining keenly aware of the obligations and scopes of the roles of parents and providers, and also by having good information not only about the medical condition and prognosis of the child but of the family’s interests and values in relation to the child’s well-being. This leads to the next normative question: what decisions are morally acceptable?

23.5.2 What Decisions Are Allowed? Of course, determining who is (are) the best person(s) to make decisions in pediatric cases still can leave us with concerns about the decisions themselves. Take Bobby’s case: We might all agree that Bobby’s parents are the correct decision makers, and yet we might be highly dubious of their decision to withhold immunizations. As such, our society has put forth a moral and legal standard to guide pediatric decision—namely, the Best Interest Standard (BIS). In the US, the BIS is an aspirational standard or a “guidance principle”) that aims at achieving some positive goal.2 While hotly debated in the ethics literature (cf Salter 2012), a seminal definition of the BIS comes from Allen Buchanan and Dan Brock (1990), who state that the BIS requires “acting so as to promote maximally the good of the individual.” But applying the standard in actual clinical

2

European nations tend to interpret the UN Convention on the Rights of the Child as making the BIS an “intervention” principle. This use of the BIS not without its controversies (cf. Ross/Swota 2017; Hester/Lew/Swota 2015; Ross 2019). In the US the “harm principle” (discussed later) serves to delineate when to intervene.

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situations can be difficult. Not only is it sometimes difficult to agree on what is “maximally good” (aka, “best) for a particular patient, when there is no agreement, what then? Whose expertise, insights, and authority reign? Should healthcare providers intervene and override parental authority? For instance, in Bobby’s case the physician believes strongly in vaccination for children. To her, this intervention is an important health protection for both the child and the community. The parents, however, disagree, possibly fearing poor medical outcomes or following a religious injunction against immunizations. Which path, leads to promoting Bobby’s best interests, and if the disagreement continues does the BIS authorize Dr. Johnson to immunize Bobby without his parents’ permission? As defined above, it is not clear the BIS gives warrant to intervene.3 The BIS, then, may fail us precisely in those difficult moments when we turn to it for clear guidance. Parents are tasked with promoting the “best interests” of their child; healthcare providers are obligated to the principle of beneficence. Given this division of norms between parental responsibilities to “best interests” and provider’s obligations to beneficence, some have argued (cf. Gillam 2016; Ross 2019) that there is a “zone of parental discretion” or a “good enough” standard of parenting that providers simply must recognize as acceptable, even when those same providers disagree that what the parents have decided is “best” for the child. Rather than just a guidance principle, there is a need for a clear standard for when to intervene. Per Doug Diekema, the suggested standard in pediatrics has been termed “the Harm Principle” wherein the provider and ethicist should ask, “Does the decision made by the parents significantly increase the likelihood of serious harm as compared to other options?” (Diekema 2004; cf. 2011).4 So, even when everyone is well-intentioned, there will be times when stakeholders become concerned that decisions being discussed might prove harmful to a child. In recognizing parental authority, the harm principle attempts to define the parameters for when that authority should be overridden by the state—an act that typically requires healthcare professionals to make a judgment about the decisions and trigger state action. Since the state intervenes only under conditions of medical neglect or abuse, the harm principle explains that only parental decisions that can be deemed harmful to the child would require state intervention. The harm principle, then, is based primarily on an ethic of protection, not one of respecting the interests of the child. All medical decisions should aim for what is best for a child in a given set of circumstances, but when parties disagree, parents typically should retain their

3 Note that in Europe, the BIS is defined and used differently. Interpretations of the UN Convention on the Rights of the child as well as certain country-specific laws have been interpreted as treating the BIS as an interventional principle, which is how it was applied in the well-known case of Charlie Gard (cf. Ross/Swota 2015). 4 This principle, too, is not without its detractors. (cf. Bester 2016; Birchley 2015).

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authority to make decisions for their child. However, there are parental decisions that threaten to cause imminent harm, and the Harm Principle sets a threshold below which we cannot allow parents to fall. As such, clinical ethicists should champion the aspirational view that all parties aim at developing a path that leads to “maximizing” the positive outcomes for a child, but must be willing and able to use the Harm Principle to help determine whether to trigger mechanisms that can lead to state intervention.

23.6

Children Continue to Develop: Teenage Decisions Making

Pediatric care poses another unique challenge; children do not remain developmentally static. They continue to grow physically, intellectually, and emotionally. This process of maturity includes an expectation of further accountability for decisions and actions. Adjustments over time must be made when weighing a minor’s stated values and interests. For instance, a 6-year-old might try to refuse a shot for tetanus after stepping on a rusty nail only to find a needle in her arm moments later. But the same would most likely not be the case for the 16-year-old who refuses to get a medroxyprogesterone acetate (a.k.a., Depo-Provera) shot because her mother wants to protect her from getting pregnant. What if, at 15, Bobby decides he wants to receive vaccinations and requests them from his physician. What if Bobby is diagnosed with Hodgkin’s disease, but he refuses chemotherapy (with or without the support of his parents)? What does the physician do? What does the clinical ethicist recommend if consulted? For some, treatment efficacy may prove so high (approximately 80%) that a refusal might be seen as medically negligent. Others might argue that the consequences of non-treatment, regardless of efficacy, are of such “high stakes” that Bobby must be protected from death regardless of the side effects. Still, others might argue that as long as Bobby demonstrates adequate maturity and decisional capacity, this vital decision should be his. Reasonable reflection, not simply emotive responses, are required in the face of such difficulties, and the use of ethical methods and norms nuanced for pediatric conditions of teenagers should be employed and discussed. Conceptually, a nod to the development, and potential authority, of a teenager has been captured by the so-called mature minor doctrine. Namely: Mature Minor Doctrine Any minor who is capable of understanding his/her treatment options, is experienced enough to weigh the consequences to him/her of those options, and is mature enough to cope with the information, deliberation, and outcomes should have authority to make the decision at hand. (Hester 2012) Though the doctrine has legal force, it is limited. Only a few states have statutory and case law coverage, and in many of those states with statutory language, the law typically refers to females regarding sexual health and pregnancy, all minors regarding

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sexually transmitted diseases and drug/alcohol abuse, and minors who are incarcerated (Coleman and Rosoff 2013).5 So, while the state would most likely not get involved in the case of 15-year-old Bobby’s desire for vaccination, when the stakes have been high in cases like Bobby’s Hodgkin’s treatments, courts have tended to side with requiring treatments of minors (cf., Cassandra C in Connecticut), but as the case of Dennis Lindberg in Washington demonstrates, this is not universally the case. Courts do seem to take seriously the idea that a minor must be intelligent and mature enough to make decisions for him/herself, but that only will not determine outcomes in court. Statutory language and case precedent still have force, no matter what abilities the minor can demonstrate. However, the question of whether or not to trigger state proceedings for clinical ethicists and clinicians is a moral one and knowledge of conditions, values, and norms matter.6 The AAP has long argued that assent from minors should be standard practice, but given that assent is never determinative in clinical cases, the implication is that minor patients should be allowed to be participants in their healthcare, not necessarily decision makers. Further, even in adult cases, a patient must have capacity to have the authority to make decisions for him/herself, and given that the presumption in pediatrics is that patients do not have capacity, the “burden of proof” to demonstrate capacity falls to the minor. This is no easy task. Not only do we know that neurobiology speaks against minors having the cognitive abilities necessary for some important high-stakes decisions (see Diekema 2011), there are no validated tools for providers to use to determine a minor’s decisional capacity. Clinical ethicists can help mediate conflicts in decision making about minors/ adolescents by respecting the minor’s ability to participate in what will happen to his/her body, but also address the moral and legal parameters for decision making, parameters that tend away from allowing adolescents to decide for themselves in many situations.

Most states also have laws that can emancipate minors from the authority of their parents – whether that be for business decisions or for all decisions. There are typically clear criteria for conditions the minor must meet to be considered emancipated, and many states require a judicial order. Further, marriage of a minor can grant the minor authority over decisions about his/her health, and pregnancy will typically provide the pregnant minor authority both over many decisions about her pregnancy and about any resulting child from that pregnancy. Having a child of one’s own, however, does not always result in granting minor parent authority over her own healthcare. 6 Debate exists around issue, with some arguing that minors are capable of mature decision making, while others, particularly in high stakes situations, argue that they simply are not capable of the reasoning and maturity necessary to grant them decisional authority. (Cf. Ross/Blustein/Clayton 2008; Steinberg 2007; Diekema 2011). 5

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Pediatrics is its own medical discipline working with a unique patient population and set of conditions. As such is has its own moral space in which patients, families, and healthcare professionals operate, and this difference is characterized by a powerful ethic of protection, the importance and scope of parental authority, and (over time) the developing maturity, and thus participation, of the patients themselves.

References American Academy of Pediatrics, Committee on Bioethics. 2016. Informed Consent, in DecisionMaking in Pediatric Practice. Pediatrics 138 (2): e20161484. Bester, J.C. 2018. The Harm Principle Cannot Replace the Best Interest Standard. American Journal of Bioethics 18 (8): 9–19. Birchley, G. 2016. Harm is all you need? Best Interests and Disputes about Parental DecisionMaking. Journal of Medical Ethics 42: 111–115. Buchanan, A., and D. Brock. 1990. Deciding for Others: The Ethics of Surrogate Decision Making. Oxford University Press. Coleman, D.L., and P.M. Rosoff. 2013. The Legal Authority of Mature Minors to Consent to General Medical Treatment. Pediatrics 131 (4): 786–793. Diekema, D.S. 2004. Parental Refusals of Medical Treatments: The Harm Principle as Threshold for State Intervention. Theoretical Medicine and Bioethics 24: 243–264. ———. 2011. Adolescent Refusal of Lifesaving Treatment: Are We Asking the Right Questions? Adolescent Medicine 22: 213–228. Gillam, L. 2016. The Zone of Parental Discretion: An Ethical Tool for Dealing with Disagreement between Parents and Doctors about Medical Treatment for a Child. Clinical Ethics 11 (1): 1–8. Hester, D.M. 2012. Chapter 15: Issues in Pediatric Ethics. In Guidance for Healthcare Ethics Committees, ed. D.M. Hester and T.L. Schonfeld, 144–121. Cambridge: Cambridge University Press. Hester, D.M., C. Lew, and A. Swota. 2015. When Rights Just Won’t Do: Ethical Considerations When Making Decisions for Severely Impaired Newborns. Perspectives in Biology and Medicine 58 (3): 322–327. Kopelman, L. 1997. The Best-Interests Standard as Threshold, Ideal, and Standard of Reasonableness. Journal of Medicine and Philosophy 22: 271–289. Nelson, H.L., and J.L. Nelson. 1995. The Patient in the Family. Routledge. Ross, L.F. 1998. Children, Families, and Health Care Decision Making. Oxford University Press. ———. 2019. Better than Best (Interest Standard) in Pediatrics Decision Making. Journal of Clinical Ethics 30 (3): 183–195. Ross, L.F., J. Blustein, and E.W. Clayton. 2008. Adolescent Decision Making. Cambridge Quarterly of Healthcare Ethics. , 18 (3):302–322 18 (4): 432–442. Ross, L.F., and A.H. Swota. 2017. The Best Interest Standard: Same Name but Different Roles in Pediatric Bioethics and Child Rights Frameworks. Perspectives in Biology and Medicine 60 (2): 186–197. Salter, E. 2012. Deciding for a child: a comprehensive analysis of the best interest standard. Theoretical Medicine and Bioethics 33: 179–198.

Chapter 24

Ethical Issues and Decision Making for Children: A European Perspective Helen Turnham and Dominic Wilkinson

Abstract There are variations across Europe in provision of and organization of ethics consultation, as well as in the approach to ethical questions. However, one common thread is that the predominant ethical consideration for decision making for children should be the best interests of the child. The European Convention on Human Rights (ECHR) influences the ethics environment in the continent. The convention places greater weight on the interests of the child than on the wishes of the parents; parental ethical rights are understood to be the product of parental duties and the primary duty of a parent is to promote the interests of the child. The chapter explores how the concept of Best Interests (BI) has been understood and interpreted in Europe. The chapter also examines the European approach to two thorny ethical issues in pediatrics. Firstly, decision making at the end of life for children is examined. Variations between European nations have been marked in the past but there is some evidence of increasing standardization. Secondly, refusals of life saving medical treatments by minors are explored. Across Europe there is increasing emphasis on the child as an independent moral agent with rights to self-determination including potentially the right to refuse treatment. Keywords Decision making · Ethics · Children · Pediatrics · Europe

24.1

Objectives

1. To outline the way that the Best Interests of the Child is interpreted in Europe. 2. To understand a European approach to disagreement around End of-Life Decisions. 3. To review refusals of life sustaining treatment by minors in Europe.

H. Turnham (*) Paediatric Critical Care, John Radcliffe Hospital and Associate Faculty Member, Faculty of Philosophy Oxford, Oxford, UK e-mail: [email protected] D. Wilkinson Newborn Intensive Care, John Radcliffe Hospital, Oxford, UK Oxford Uehiro Centre for Practical Ethics, University of Oxford, Oxford, UK © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_24

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Case 1

Charlie Gard was an infant with a rare severe mitochondrial disorder causing severe muscle weakness and myopathy. All previous children diagnosed with his condition had died in infancy. Charlie’s doctors believed that it would be in his best interests to withdraw mechanical ventilation and allow him to die, while his parents wished to continue ventilation for several months in order to try an experimental treatment. They raised funds to take Charlie to the United States (US) for this therapy. The case was referred to the hospital ethics committee and later heard by the courts (Taylor 2019). Would it be in Charlie’s BI to have intensive care withdrawn and die, or to be transferred to another country to try a treatment thought to have an extremely small chance of helping him?

24.3

Case 2

David (Boztas 2017) was a 12 year old boy living in the Netherlands, who had surgery and then radiotherapy for a brain tumor, but did not subsequently wish to have chemotherapy. He was estimated to 75–80% chance of survival with chemotherapy, but 50% without the treatment. David was particularly concerned about the side effects of chemotherapy and the effect on his quality of life. His parents disagreed – his mother supported alternative treatments, while David’s father wished for David to have the chemotherapy. A psychiatrist, who had evaluated David, believed that he was not depressed. Should David’s wishes be respected?

24.4

Introduction

Across Europe there are wide variations in the structure of healthcare systems as well as in ethical, religious and political values. There is no uniform experience of clinical ethics consultation (CEC), with variations among European countries in the availability and function of clinical ethics support (Fournier et al. 2009). Ethics Committees (EC) or advisory groups predominate, often drawing on volunteer members with variable experience and training in ethics. Individual clinical ethics consultants are less common than in North America, though are increasingly common in some parts of Europe e.g. Italy (Hurst et al. 2007; Orzechowski et al. 2019). In the United Kingdom (UK), case consultation, if available, is usually accessed by referral to the EC rather than to clinical ethics consultants. Some groups, including our own, have capacity for rapid review of urgent cases drawing on a sub-group of the committee. One common thread across countries is provided by common legal and ethical norms, enshrined in the ECHR, which includes a focus on the BI of the Child as the

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predominant ethical consideration. This chapter will first outline the way in which Best Interests have been understood and interpreted for clinical ethics in Europe.

24.5

Best Interests of the Child

When cases relating to children are referred for CEC, the first question to ask is, “What would be in the child’s best interests?” A separate question is, “What do the parents want to happen?” Perhaps because of the European Convention standards, decisions for children in Europe potentially place greater weight on the interests of the child, and a lesser weight on the wishes of parents. Parental autonomy is enshrined in Article 8 of the ECHR, and upheld by the European Court of Human Rights (ECtHR). However, parental legal and ethical rights are understood to be a product of parental duties; it is the parents’ duty to promote the interests of their child. The interest of the child provides both “the normative justification for parental authority and the limits on its acceptable use” (Wilkinson 2019). The predominance of BI is reflected in both pan-European and individual national ethical guidelines and legislation. The BI of the child takes precedence even if this is contrary to the parents’ or child’s view. In the recent, highly publicized UK case of Charlie Gard (Case 1) the ECtHR endorsed the UK High Court decision not to provide a novel therapy to Charlie and to stop his life support, based upon an assessment of Charlie’s BI and in opposition to his parents. It appears likely that the decision would potentially have been different, yielding to parental autonomy if the case had been heard in the US (Paris et al. 2017). However, there can be different views about what would be best for the child (McDougall et al. 2016). It can be challenging for an EC or a court to decide whose view of the child’s best interests to favor. Partly for this reason, best interests as the standard for intervention into parental decision making has sometimes been criticized. A “harm threshold” has been suggested as an alternative. This would allow parents’ wishes, and view of the child’s best interests, to be followed unless what they propose would risk significant harm. Ethical debate about the “harm threshold” in pediatrics continues (Wilkinson 2019). While it is not the legal standard in any country in Europe, outside the courts parents are frequently permitted to make decisions that are contrary to BI but are not harmful. It may be helpful for EC or ethics consultants to try to identify the potential harms of the course of action requested by parents and compare that with the amount of freedom (or “zone of discretion”) (McDougall et al. 2016) given to parents in other areas of life. Across Europe there are differences in interpretation of types of decisions that are acceptable for parents to make. For example in the UK, parents are permitted to decline routine vaccination of their children because this decision is perceived to fall within the “zone of parental discretion” (McDougall et al. 2016), and the courts have

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supported this in most cases. But eleven European countries have mandatory childhood immunizations. A recent statement from the European Academy of Paediatrics defends the notion of mandatory vaccinations based on the duty to act in the BI of children stating, ‘the rights of the child surely extend to the right to be protected from preventable severe infectious disease’ (Hadjipanayis et al. 2020). For countries that have adopted the position that the benefit of immunization for children takes precedence over the rights of parents to choose what they would like for their individual child, this may imply that in other situations of disagreement the child’s welfare will also predominate. However, immunization is not purely a question of benefit to the individual child. Some of the countries that introduced mandatory vaccination were responding to significant increases in mortality from preventable infectious diseases such as measles, mumps and rubella in the last 10 years. The public health benefit is also relevant to immunization policy, though may not be as relevant to individual cases referred for clinical ethics.

24.6

Decision Making at the End of Life

The BI of a child is perhaps most controversial when it comes to end of life decisions (Case 1). Historically, there has been marked variation in practice among European countries regarding these decisions for infants and children (Devictor et al. 2017). In some parts of Europe it was rarely thought to be in a child’s BI to withdraw lifeprolonging treatment, while in other regions such decisions were commonplace. In the Netherlands and Belgium decision making for children at the end of life might also include active ending of life, or euthanasia, an intervention illegal across the rest of Europe. More recently there has been a move towards some standardization in approaches across Europe (Wilkinson 2017). For example, the involvement of parents in decision making, once variable, is now increasingly standard within the limits described above (Wilkinson and Savulescu 2019). As in other countries, the concept of ‘futility’ is often raised in end of life decisions and appears in ethics guidelines across the continent, such as the Amendment to the Euthanasia Act 2012, Belgium (Brouwer et al. 2018). EC might hear from clinicians that they believe that the treatment requested by parents would be “futile”. Yet, there are inherent difficulties with the concept of futility, both in defining the term and applying the concept to individual children. Futile can mean zero chance of success or small chance of success and it is rarely possible to be certain in medicine (Wilkinson 2017). Such certainty is increasingly difficult with advances in medical technology (Wilkinson and Savulescu 2019) such as extra corporeal membrane oxygenation to treat respiratory failure or gene therapy to treat muscular myopathies, since there may often be further theoretical or actual life-prolonging treatment options. It can be important in such cases for the EC to establish the reasons why health professionals believe a treatment to be futile. Is it based on their personal experience

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(how many similar patients have they treated) or published literature? If the latter, does this literature apply to the current patient or are there any reasons to think that the current case is different in some relevant way? Establishing whether there are different views (or “dissensus”) among the clinical team is important because it can suggest there is medical or moral uncertainty about the right course of action (Taylor 2019). Such uncertainty may mean that it is appropriate to provide or continue treatment (if that is the parents’ wish) since there appears to be more than one reasonable view about the care of the child. In the Charlie Gard case, there was disagreement about his treatment, but debate about whether this was “reasonable” (Wilkinson and Savulescu 2019). Additionally, it can be important to suggest to the clinical team that they obtain or at least offer an external second opinion. Where parents disagree with the treating clinicians, it can be helpful for them to have an opportunity to identify and seek out such a second opinion. They may not trust the independence of an opinion that is sourced by the treating team. If the second opinion confirms the original clinicians’ assessment, parents may be better able to accept it and come to terms with the outcomes. If the second opinions differs, there may be in some cases an opportunity to transfer the care of the child. Disagreements occur between medical teams and parents about what is the right thing to do. It is useful to identify whether disagreement is primarily a question of prediction, or of evaluation. For example, there may be agreement on a low chance of success, but disagreement on the goals of treatment. The team of doctors and nurses caring for the patient may feel the chance of success is so low that it is not right for the child to undertake the burdens of that treatment. Parents might feel that treatment, with even a very small chance of success and significant burden, should be tried. In the words of one parent from our practice, “death is the worst pain there is, just try”. Parents sometimes see the quality of the life of their child very differently from the clinicians. They may even value quantity of life over quality of life, i.e. choosing continued life no matter how impaired. In contrast, some medical and nursing teams caring for such a child can struggle to justify continued discomfort potentially experienced by the patient from invasive procedures essential to maintain life. They may view the burdens of these interventions as outweighing their benefits and believe that they should be discontinued. Through encouraging open discussion and clarifying the source of the disagreement, the EC can sometimes help identify both common ground and pathways to resolution. One important ethical consideration in disagreements about treatment (particularly around intensive care) is that of limited healthcare resources. While discussion of resource allocation and rationing is controversial in almost every community, it is possibly more widely accepted in European countries where publicly funded healthcare systems have finite resources and cannot provide desired treatments to every patient who might wish for them. This means that even if there remains uncertainty about treatment, and even if it would not be harmful to the child, it may nevertheless be unethical to provide that treatment because those limited resources would benefit other children (or other patients) more.

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Where there are questions about resource allocation it can be important to know whether there is a relevant local, regional or national policy relating to the treatment. It can be helpful for the EC to ask about other similar cases and how they have been managed. It is difficult to justify withholding treatment from the current patient if other patients in a relevantly similar situation receive the treatment from the publicly funded healthcare system. On the other hand, where it is clear that resources are limited and there are other patients who would benefit more from the healthcare resource there is a potentially strong ethical case in favor of not providing/continuing the requested treatment. There is, to our knowledge, no comparative data on how disagreements around futile medical treatment would be addressed by ECs in Europe. There appears to be a trend in Europe away from decisions made entirely by doctors, towards decisions made in conjunction with parents and children. This shift may mean that there is now more consideration given to providing treatments desired by parents, even if opposed by doctors. But clinical ethics consultations in Europe will also give consideration to the impact of providing treatment on other patients. In the case of intractable disagreements, our experience is that ECs will put most weight on consideration of the BI of the Child and some weight on limited resources. This approach may justify denying parental requests for treatment, or in some cases, it may mean referral to the courts.

24.7

Refusals of Life Saving Treatment by Minors

In Europe, as elsewhere in the world, medical and ethical decisions for children increasingly pay attention to the voice of the young person. All European nations are party to the United Nations Convention on the Rights of the Child, and article 12 endorses the right of the child to be heard. The European Convention on Human Rights and Biomedicine of the Council of Europe (Council of Europe 1997) requires that “the opinion of the minor be taken into consideration as an increasingly determinative factor, in accordance with his/her age and degree of maturity”. The confederation of the European Specialists of Paediatrics statement on withdrawal and withholding of life supporting treatment declares that the child should be “as fully involved in the decision-making process as possible”. The emphasis in Europe is increasingly on the child as an independent moral being with rights to self-determination. Parents have responsibilities toward their children, not proprietary rights over them (Taylor 2019) and these rights decrease as the child is able to make decisions for themselves. Across Europe individual countries debate the increasing rights of mature minors to consent to or refuse treatments. This must be balanced against the need to safeguard the interests of the child and respect their developing will and decisionmaking capacity. Some regions such as in Catalonia (an area of Spain with regional autonomy) have reduced the age of consent for all decisions.

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Other countries consider capacity to consent or refuse treatment to be unrelated to age but determined by level of maturity and understanding and situation dependent; a child might have capacity to make some decisions but not all. Often, such as in the UK and The Netherlands, children must demonstrate a greater level of understanding than adults in a comparable situation (Brouwer et al. 2018). A court in Northern Holland concluded that David (case 2) was “100 per cent competent” to refuse the treatment. One important practical consideration for the EC to review is what the impact would be on the child of providing treatment against their wishes. For example, it might be ethically acceptable to sedate or restrain a child to administer a treatment that would be in their best interests, such as a blood transfusion. However, for treatments that are required very regularly, e.g. chemotherapy, this can become burdensome in itself, and may even make it questionable whether it remains in the child’s best interests. When it comes to treatments at the end of life, the wishes of the child are potentially even more important, though there are significant differences among European countries in how these are treated. The UK does not allow even mature minors to refuse life-saving treatment, though they can authorize such treatment without their parents (Gillick 1989). This situation is somewhat in contrast to UK national guidance, which increasingly advocates for shared decision making between physicians and their mature patients; outside the courts, children do refuse life-saving treatment with the agreement of their parents and doctors. In two EU countries, Belgium and the Netherlands, there is a societal emphasis on both quality of living and quality of dying. They permit children to request euthanasia at the end of life when they are “judged to display a capacity of discernment” in the former, or are over the age of 12 in the latter. There are greater restrictions on children’s requests for euthanasia than upon their adult counterparts (Brouwer et al. 2018).

24.8

Conclusion

It is difficult to directly compare approaches between European Ethics Committees and those in North America. However, as a generalization, in Europe there is potentially less ethical weight given to the rights of parents to decide for a child, and greater evidential weight to the views of health professionals about what would be in the child’s best interests, in particular weighing the benefits versus burdens of the interventions and anticipated outcomes. Regardless of the country, all decision makers must act in the BI of the child, though determining which view of BI prevails is an ongoing and thorny challenge.

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References Boztas S. 2017. Dutch Court Rules 12-year-old Boy Can Refuse Chemotherapy. Telegraph, 13 May. https://www.telegraph.co.uk/news/2017/05/13/dutch-court-rules-12-year-old-boycan-refuse-chemotherapy Brouwer, Marije Els, Willemien D.E. Maeckelberghe, and Eduard Verhagen Weerd. 2018. Quality of Living and Dying Pediatric Palliative Care and End-of-Life Decisions in the Netherlands. Cambridge Quarterly of Healthcare Ethics 27: 376–384. Devictor, Latour, Jos M. Latour, and EURYDICE II study group. 2017. Forgoing Life Support: How the Decision Is Made in European Paediatric Intensive Care Units. Intensive Care Med 37: 1881–1887. Fournier, Véronique, Eirini Rari, Reidun Førde, Gerald Neitzke, Renzo Pegoraro, and Ainsley J. Newson. 2009. Clinical Ethics Consultation in Europe: A Comparative and Ethical Review of the Role of Patients. Clinical Ethics 4 (3): 131–138. Gillick v West Norfolk and Wisbech AHA [1985] UKHL 7. Hadjipanayis, Adamos, Hans Jürgen Dornbusch, Zachi Grossman, Leda Theophilou, and Joe Brierley. 2020. Mandatory Vaccination: A Joint Statement of the Ethics and Vaccination Working Groups of the European Academy of Paediatrics. Eur J Pediatr 179: 683–687. Hurst, Samia A., Stella Reiter-Theil, Arnaud Perrier, Reidun Forde, Anne-Marie Slowther, Renzo Pegoraro, and Marion Danis. 2007. Physicians’ Access to Ethics Support Services in Four European Countries. Health Care Analysis 15.4 (2007): 321. Orzechowski, Marcin, Maximilian Schochow, and Florian Steger. 2019. Clinical Ethics Consultation in the Transition Countries of Central and Eastern Europe. Science and Engineering Ethics: 1–18. McDougall, Rosalind, Clare Delany, and Lynn Gillam. 2016. When Doctors and Parents Disagree, Ethics, Paediatrics and the Zone of Parental Discretion First Edition. Sydney: The Federation Press. Paris, J. Ahluwalia, B. Cummings, M. Moreland, and D. Wilkinson. 2017. The Charlie Gard Case: British and American Approaches to Court Resolution of Disputes Over Medical Decisions. J Perinatol 37: 1268–1271. Taylor, R. 2019. In Parental Decisions and Court Jurisdiction In Parental Rights, Best Interests and Significant Harm. Medical Decision-Making on Behalf of Children Post Great Ormond St vs Yates, ed. I. Goold, J. Herring, and Auckland C. Oxford: Hart. Wilkinson, D., and J. Savulescu. 2019. Ethics, Conflict and Medical Treatment for Children from Disagreement to Dissensus. London: Elsevier. Wilkinson, D. 2017. Futility. In The International Encyclopedia of Ethics, ed. H. LaFollette. https:// doi.org/10.1002/9781444367072.wbiee839. ———. 2019. Defence of a Conditional Harm Threshold Test for Paediatric Decision-Making. In Parental Rights, Best Interests and Significant Harm. Medical Decision-Making on Behalf of Children Post Great Ormond St vs Yates, ed. I. Goold, J. Herring, and Auckland C. Oxford: Hart.

Chapter 25

The Adolescent Transplant Candidate: Thorny Issues in Assessment and Allocation Aviva Goldberg

Abstract Despite advances in donation and patient survival, organ transplantation remains an area fraught with ethical challenges. There are not yet enough donated organs to serve the ever increasing population suffering from organ failure, and transplant requires the recipient to adhere to a lifetime of post-transplant medication and care. This chapter examines the thorny issue of transplant candidacy and allocation for adolescents. Using a case vignette, the author explores the issues of non-adherence and substance use as they relate to kidney transplant candidacy. How should an ethics consultant approach a case in which a teenage candidate demonstrates behavior that worries the transplant assessment team? Does the fact that the donated organ is a scarce resource mean that the transplant should be denied to such a child, or do concepts of beneficence and equity require that a more nuanced approach be employed? Additionally, the chapter deals with the emerging autonomy of the adolescent when she decides to refuse an offered chance at re-transplantation. Examining the concepts of autonomy, best interests and shared decision making can help the ethics consultant guide the team towards an approach that serves to offer her the best possible chance at survival while respecting the teen’s emerging autonomy and differing concepts of “best” outcomes. Keywords Transplant · Adolescent · Substance use · Adherence · Capacity

25.1

Objectives

1. Discuss how the clinical ethicist can be involved in decisions of transplant candidacy for adolescents. 2. Discuss how social support and social behaviors (e.g. illicit drug use) should affect adolescent organ transplant candidacy.

A. Goldberg (*) Department of Pediatrics and Child Health, Max Rady College of Medicine, University of Manitoba, Winnipeg, Canada e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_25

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3. Explore how the ethics consultant can frame adolescent decision making in the context of dialysis and kidney transplantation.

25.2

Case One

Ashley is a 17 year old teenager with end stage kidney disease due to vasculitis (an autoimmune inflammation of the kidneys.) She has no potential living donors. She is medically ready for transplant but is often late for dialysis, is not adherent to her fluid or diet restrictions, and admits to recreational marijuana use two to three times a month which she states makes her “feel normal” when she is with her friends and helps stimulate her appetite. She lives in a jurisdiction in which she will lose her pediatric priority for a deceased donor kidney transplant if she does not receive the transplant within the next year. Her transplant team wonders whether they should activate her on the deceased donor waiting list now, when they still have concerns about whether she will adhere to the post-transplant regimen and how her drug use may affect her chances at success. The transplant program does not have an ethicist embedded within their team, so they ask for a clinical ethics consultation from the hospital-based program. Ultimately a decision is made to go ahead with transplant listing and Ashley receives a transplant within a few months. She is relatively adherent to her medical care but infection with polyoma virus, a complication out of her control, causes significant loss of function within 6 months. She returns to dialysis and is in a depressed mood. She states that she is “done with dialysis” and unwilling to consider a second transplant. Her parents plead with her to continue, but she remains adamant that she is “done.” The ethics service is consulted again and asked, “what do we do now?”

25.3

Introduction

A clinical ethics consultation (CEC) on this case could involve discussion of several issues: the benefits and drawbacks of listing Ashley for transplant before she loses her pediatric priority but while the team is still concerned about her adherence; the fairness of including suspected marijuana use and other behaviors as part of Ashley’s assessment; how much decision-making authority Ashley should have in this situation and the role of her parents and medical team in making decisions on her behalf. Each will be discussed in turn.

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Timing of Transplant and Non-adherence as a Listing Factor

Many national or regional organ allocation programs give children with end organ disease special access priority for deceased donor organs. In the United Kingdom, age and degree of tissue matching are combined in a complex formula that gives candidates less than 50 years old advantage over older adults, and further priority in a graded manner for candidates less than 18 years old (UK Transplant 2019; NHS Blood and Transplant 2021). In Manitoba, Canada children receive priority over adults for deceased donor kidneys, equivalent to that of previous living kidney donors, but lose that priority when they turn 19 years old (Transplant Manitoba 2020). In the United States, most pediatric priority points end on the child’s 18th birthday (OPTN 2020). This priority can be justified by both utility and equity, the two main considerations in ethical organ allocation policy (OPTN 2014). Children who receive a transplant will gain more quality adjusted life years from that organ compared to an adult recipient as they have more years of potential lifespan, so utility concerns can be satisfied. In addition, kidney disease impairs the physical growth and brain development of children, and hospitalizations and medical appointments mean that children with end stage kidney disease will miss out on school and social times with families and peers. Since the unique aspects of pediatric kidney disease increase the benefits of transplant compared to adults with similar disease, pediatric priority can also be justified on equity grounds. While transplant generally offers improvements in both survival and quality of life, it is important not to pursue transplant until the child or adolescent is psychologically ready. The most common reason for transplant failure in adolescents is non-adherence, i.e. not taking medications and other therapies as agreed to with the medical team (Foster et al. 2011). A second transplant is possible, but may be more difficult to achieve since antibodies to the first transplant can make finding a second match much more difficult. Therefore, transplant listing should be activated only once there is a reasonable assurance that the child or adolescent will be able to adhere to the post-transplant requirements and get the greatest chance at success with the first kidney she receives. The clinical ethics consultant involved in Ashley’s case will likely not be setting the transplant allocation policy for the jurisdiction but may be able to help the team work within the allocation rules to determine when transplant listing would be best for Ashley. Because of the concerning outcomes with nonadherence, it might seem reasonable to delay transplant until Ashley attains the maturity that emerges further in young adulthood. A delay in Ashley’s case could give the team time to offer resources to help improve her adherence and better prepare her to take care of her new organ. Even if she loses her pediatric priority, she will maintain the waiting time accrued since her dialysis start date which will help her move up the waiting list. When she does eventually receive a transplant, she will hopefully be in a better social and mental state to take good care of it, meaning this first transplant could last longer

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and allow her to achieve educational, social and family-related goals of young adulthood. In the meantime, a donated organ could go to another child or adult recipient who is currently better prepared to care for it, thus honoring the gift of life given by the donor family and maximizing overall utility. Waiting, however, is not without its serious drawbacks. While the risk of death for children with kidney disease has markedly decreased in recent years, those on dialysis still die at a rate at least 30 times higher than the general pediatric population (Mitsnefes et al. 2013). Since these deaths are usually due to sudden conditions like heart disease, infections or severe electrolyte imbalances it can be difficult to predict when the opportunity for transplant has been lost until it is too late. The months or years she spends on dialysis will likely be of significantly less quality than she could expect post-transplant, so even if she survives to transplant in her adult years she will have suffered some harms (Wightman et al. 2019) Once her pediatric priority is lost her waiting time could increase dramatically, from months to years, so a decision to delay now could mean a waiting time that is much longer, and that cannot be reduced once she cross the adult threshold. The CEC should help explore the case from a beneficence perspective, looking at the benefits and drawbacks of waiting until Ashley’s adherence improves and challenge the team to consider how much weight should be put on her nonadherence in their assessment of her readiness. Non-adherence is not just simple misbehavior; it involves complex behaviors, emotions and psychological issues for both patients and their caregivers including family cohesion and distress (Nevins et al. 2017). Without significant attention to the root causes of the non-adherence, there will be no magic switch that will make her a better candidate, and the transplant team might not ever believe she is “good enough.” Proving that she can do the dialysis related parts of her care may help portend better post-transplant management, but this is not guaranteed since the medications, schedule and restrictions will be very different post transplant than during dialysis. The medical team may have feelings of disappointment or betrayal that Ashley is not following their advice, which may be coloring their perception of her worthiness to receive a transplant. The CEC can help them unpack these complex feelings to focus on what path would offer Ashley the best chance at achieving her best health and offer an outsider perspective from someone who has not been enmeshed in her care thus far.

25.5

Marijuana and Other Behaviors in Transplant Candidacy Decisions

The clinical ethicist can also help frame the discussion of recreational marijuana use in the transplant assessment. The transplant community does not yet seem to have a unified approach to how marijuana use should affect transplant candidacy, and the differing legal status of marijuana use in different states and countries further

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complicates the issue. A few programs clearly state that any drug use, legal or illegal, is a contraindication to transplant at their centers while for others it may not be (Wood 2017). In a study of cardiologists, a majority felt that there was no frequency of marijuana use that should be allowed for a heart transplant candidate, including some from states in which such abstinence requirements are illegal (Neyer et al. 2016). Despite the misgivings of the transplant community, there is little strong evidence that marijuana use directly affects kidney transplant outcomes. There are occasional case reports of serious and even fatal infections after smoking marijuana products, and some evidence that the drug metabolites can affect drug levels of important immunosuppressant medications (Hauser et al. 2016; Rai and Winder 2017). But drug use, like adherence, is a complex topic. Recreational drug use in teenagers is extremely common and marijuana is now legalized, for adults, in several US states and many countries, so it is hard to see adolescent use as a clear “red flag” indicator of future nonadherence. Population level studies suggest that patients who develop cannabis use disorder (addiction) after transplant do have worse outcomes than other patients, but no such compelling evidence is shown for recreational users (Greenan et al. 2016). Important points for the ethics consultant in Ashley’s case would be to assess to the greatest degree possible whether her drug use is or will become problematic, and to encourage discussion about the biases that the transplant team may feel towards drug users. The consultant might point out that restricting transplant access solely based on recreational drug use may serve to further heighten existing inequities in transplant access seen regarding social status and race and challenge the transplant team consider how much importance they should assign to this lifestyle choice.

25.6

Adolescent Decision Making in Transplant Listing Decisions

Ashley faces several life altering and potentially life-threatening decisions in this case: should she agree to be listed for a first transplant, return to dialysis after the transplant fails, and pursue a second transplant, or is there a point at which she can decide to stop life-sustaining interventions? While high technology medicine, like life support devices and organ transplantation, have obvious benefits, they also come with huge burdens. When considering her choices after the first transplant fails, Ashley must steel herself against the possibility that she will again need to adhere to a strict medication regimen and frequent medical check-ups, but also the real possibility that even with a successful transplant her life expectancy, career options and opportunities for “normal” life experiences may be significantly limited. The role of the clinical ethicist at this point in the case would be to review the approach to decision making in adolescents and explore how it is similar or dissimilar to the decision making for adults and for younger children. The right of capable

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adults to refuse medically recommended therapy is well recognized, and some adults in a similar situation make the decision to pursue a second transplant or return to dialysis if their transplant fails. True respect for autonomy requires healthcare professionals to be willing to accept a refusal of even the most clearly beneficial treatment, as long as the individual refusing it is making the choice voluntarily, with adequate knowledge, with the ability to reason through the alternatives and while demonstrating a relatively stable set of values. In contrast, young children cannot express their values. Decisions for them are often made by their parents on a best interests standard, which is “the option that maximizes the person’s overall good and minimizes the person’s overall risks of harm” (Kopelman 2013). When parents make decisions that do not meet this standard, state intervention may be warranted using the harm principle, which states that parental decision-making authority should be respected until a parent’s choice poses “some harm to the child” (Diekema 2004). Decisions for adolescents borrow from both these paradigms, asserting that teens can and should be involved in decisions about their own care (Katz and Webb 2016). Parents act as decision makers for their younger children, but for an adolescent the decision making should ideally be a shared responsibility between parent and child and fall more to the choices of the adolescent as she develops a broader sense of understanding and more permanent set of values. Ethicists and courts have allowed “mature minors” to make such choices but apply more scrutiny to the adolescent’s choice in life threatening decisions because the stakes are so high (Coughlin 2018). Logistically, it can be difficult to force adolescents to accept unwanted treatments, especially if they are ongoing, i.e. restraining a 2 year old to place an IV is one thing, while restraining a teenager for repeated dialysis treatments is quite another. The reluctant 2 year old will suffer short term distress and some degree of pain. For the adolescent, the repeated dialysis access requires them to be still, not only for the initial dialysis “poke” but for the 3–4 h treatment, 3–4 times a week. It would be terrifyingly easy for an adolescent to remove their own dialysis access needle or the access to their catheter, leading to potential infection and extreme blood loss within minutes. It is, of course, understandable for the adults in Ashley’s life, both parents and healthcare professionals, to be concerned that the impulsiveness and risk-taking behavior that characterizes normal adolescent decision making may be playing a role in such a life alerting decision. But Ashley’s age alone is not necessarily determinative of her capacity to make this choice, and adolescents are routinely trusted to make high stakes decisions like what career to pursue or how to behave while driving a car. The clinical ethicist can explore with Ashley why she is making this choice, and whether there are aspects of her care that could change and improve her outlook. Her capacity to make these choices can be demonstrated if she can do the same things we would ask of adults: display voluntariness, understanding of consequences and relatively stable values, and when she enters the adult healthcare system, she will likely be assumed to be able to make these choices herself. A group meeting facilitated by the ethics consultant can allow her parents to explain their perspective and why they are concerned and give Ashley the chance to express her

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perception of the burdens and benefits of her kidney care and explore differences between their views. If a decision is made not to proceed with a second transplant or further dialysis, there is still much that can be offered, and the clinical ethicist can help the team realize what options exist for multi-disciplinary and collaborative care. Palliative care colleagues can be especially helpful in this situation, helping manage symptoms of end organ disease like itchiness and fluid overload (Wentlandt et al. 2017). Spiritual care colleagues can help define and achieve end-of-life goals and place her illness and future demise in a context that has meaning for her. Debriefing with the ethics consultant might also help the transplant team deal with the emotional distress they may have if Ashley ultimately dies after a decision to limit therapies. As they move through this decision, the consultant can remind the team that a decision to withdraw curative treatment is not the same as a decision to withdraw care (Beauchamp and Childress 2013).

25.7

Conclusions

Ashley’s case is tragic and challenging on many levels. She developed lifethreatening disease as a child, did not benefit long term from the much valued kidney transplant, and is now considering the real possibility of her own death at an all-too-early age. The CEC can help Ashley, her parents, and the transplant team discuss how to approach decision making in this case and explore the differing values held. The consultant can also help the team deal with the distress they may feel that they were not able to improve her life in the way that they had hoped. Shared decision making, a respect for Ashley’s capacity and emerging autonomy, and a commitment to care throughout her disease journey will help her team to best support her.

References Beauchamp, T.L., and James F. Childress. 2013. Principles of Biomedical Ethics. 7th ed. New York: Oxford University Press. Coughlin, K.W. 2018. Medical Decision-Making in Paediatrics: Infancy to Adolescence. Paediatrics & Child Health 23 (2): 138–146. Diekema, D. 2004. Parental Refusals of Medical Treatment: The Harm Principle as Threshold for State Intervention. Theoretical Medicine and Bioethics 25 (4): 243–264. Foster, B.J., M. Dahhou, X. Zhang, R.W. Platt, S.M. Samuel, and J.A. Hanley. 2011. Association Between Age and Graft Failure Rates in Young Kidney Transplant Recipients. Transplantation 92 (11): 1237–1243. Greenan, G., S.B. Ahmad, M.G. Anders, A. Leeser, J.S. Bromberg, and S.V. Niederhaus. 2016. Recreational Marijuana Use Is Not Associated with Worse Outcomes After Renal Transplantation. Clinical Transplantation 30 (10): 1340–1346.

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Hauser, N., T. Sahai, R. Richards, and T. Roberts. 2016. High on Cannabis and Calcineurin Inhibitors: A Word of Warning in an Era of Legalized Marijuana. Case Reports in Transplantation 2016: 4028492. Katz, A.L., S.A. Webb. 2016. Committee on bioethics. Informed Consent in Decision-Making in Pediatric Practice. Pediatrics 138 (2): e20161485. https://doi.org/10.1542/peds. 2016-1485. PMID: 27456510. Kopelman, L.M. 2013. Using the Best Interests Standard to Generate Actual Duties. AJOB Primary Research 4 (2): 11–14. Manitoba, T. 2020. Kidney Allocation. Retrieved from https://www.transplantmanitoba.ca/ transplant-program/kidney-allocation. Last accessed 15 Feb 2020. Mitsnefes, M.M., B.L. Laskin, M. Dahhou, X. Zhang, and B.J. Foster. 2013. Mortality Risk Among Children Initially Treated with Dialysis for End-Stage Kidney Disease, 1990–2010. JAMA 309 (18): 1921–1929. Organ Procurement and Transplantation Network (OPTN). 2014. Ethical Principles of Pediatric Organ Allocation. Retrieved from https://optn.transplant.hrsa.gov/resources/ethics/ethicalprinciples-of-pediatric-organ-allocation/ ———. 2020. Policy 8- Allocation of Kidneys. https://optn.transplant.hrsa.gov/governance/ policies/. Nevins, T.E., P.W. Nickerson, and M.A. Dew. 2017. Understanding Medication Nonadherence After Kidney Transplant. Journal of the American Society of Nephrology 28 (8): 2290–2301. https://doi.org/10.1681/asn.2017020216. Neyer, J., A. Uberoi, M. Hamilton, and J.A. Kobashigawa. 2016. Marijuana and Listing for Heart Transplant: A Survey of Transplant Providers. Circulation. Heart Failure 9 (7). https://doi.org/ 10.1161/circheartfailure.115.002851. NHS Blood and Transplant. 2021. POL186/11 – Kidney transplantation: Deceased donor organ allocation. Available at: https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/22127/ pol186.pdf. Retreived February 16 2022. Rai, H.S., and G.S. Winder. 2017. Marijuana Use and Organ Transplantation: A Review and Implications for Clinical Practice. Current Psychiatry Reports 19 (11): 91. https://doi.org/10. 1007/s11920-017-0843-1. UK Transplant. 2019. Kidey Allocation Policy-POL 186. https://www.odt.nhs.uk/transplantation/ tools-policies-and-guidance/policies-and-guidance/. Wentlandt, K., A. Weiss, E. O'Connor, and E. Kaya. 2017. Palliative and End of Life Care in Solid Organ Transplantation. American Journal of Transplantation 17 (12): 3008–3019. https://doi. org/10.1111/ajt.14522. Wightman, A., M.C. Bradford, and J. Smith. 2019. Health-Related Quality of Life Changes Following Renal Transplantation in Children. Pediatric Transplantation 23 (2): e13333. https://doi.org/10.1111/petr.13333. Wood, S. 2017, April 24 2017. Family: Utah Man Dies in Philly After Double-Lung Transplant Denial at Home for Smoking Pot. The Philadelphia Inquirer. Retrieved from https://www. inquirer.com/philly/business/cannabis/Utah-man-dies-in-Philly-Penn-Medicine-after-lungtransplant-denied-at-home-marijuana.html.

Chapter 26

Classifying the Contradiction: A Practical Approach When Surrogates Appear to Contradict a Patient’s Wishes Hilary Mabel, Sharon L. Feldman, and Margot M. Eves

Abstract Cases in which a surrogate’s decision appears to contradict a patient’s wishes can be challenging to navigate. Both surrogates and healthcare professionals have an ethical obligation to honor the patient’s authentic wishes. When that preference is unclear, or seemingly clear but a surrogate insists otherwise, healthcare professionals may struggle with how best to fulfill their responsibility. This chapter offers a method for classifying cases of apparent contradiction into one of three categories: (1) True Contradiction; (2) Partial Picture Bias; or (3) Internal Contradiction. Using a framework called The Five Cs, the chapter explains how to clarify the patient’s authentic preferences and pinpoint the relevant category of contradiction. Finally, for each category, the chapter outlines a healthcare team’s obligations and identifies ways that clinical ethics consultants can support stakeholders to honor a patient’s authentic wishes. Keywords Surrogate decision making · Decision-making framework · Patient wishes · Clinical ethics · Conflict resolution · Decision-making conflicts

26.1

Objectives

1. Describe three categories that capture the reasons a surrogate’s decision may appear to contradict a patient’s wishes: (1) True Contradiction; (2) Partial Picture Bias; or (3) Internal Contradiction.

H. Mabel Ethics Program, Wellstar Health System, Atlanta, GA, USA e-mail: [email protected] S. L. Feldman Department of Pediatrics, University of Melbourne, Melbourne, Australia e-mail: [email protected] M. M. Eves (*) Center for Bioethics, The Cleveland Clinic, Cleveland, OH, USA e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_26

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2. Provide guidance for clarifying a patient’s authentic preference and classifying the case according to the defined categories. 3. Identify ways clinical ethics consultants can support stakeholders to honor the patient’s wishes in the three case categories.

26.2

Case 1

Ms. Renner, a 70-year-old with chronic obstructive pulmonary disease, presents to the ED in respiratory distress. Her three adult children accompany her. She declines intubation, stating “I never want to be on a breathing machine. My brother had COPD and died on a ventilator. I do not want one, even if that means I’ll die.” After she loses capacity, her adult children request that she be intubated. The healthcare team refuses to intubate her and requests a clinical ethics consultation to help manage the family’s angry response.

26.3

Case 2

Ms. Jones, a 65-year-old patient, experiences a massive stroke after spending several days successfully recovering from a Left Ventricular Assist Device (LVAD) placement. During her pre-surgical evaluation, she told the healthcare team that she would want life-sustaining treatment “only for seven days” if she were to experience a critical or devastating event. She declined to complete advance directives, stating that she trusted her family to make decisions. The healthcare team places an ethics consult because the 7-day mark is approaching, and the patient’s family say they want life-sustaining treatment to continue. In Case 1, the ethically appropriate course was clear. Ms. Renner had decisionmaking capacity and expressed an unambiguous treatment decision. The healthcare team and the patient’s Surrogate Decision Makers (SDMs) had all been present to hear her clearly-articulated decision. Additionally, the clinical picture had not changed in the short time since the patient expressed her preference. The fundamental obligation of the healthcare team to honor Ms. Renner’s decision was clear. Such clarity is not common to all cases where healthcare teams are faced with surrogate decisions that appear to contradict a patient’s wishes. This chapter will identify three categories of such cases, offer practical guidance for clarifying a patient’s wishes in these scenarios, and outline the ways that clinical ethics consultants can support healthcare teams and families through these dilemmas.

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26.4

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Surrogate Decision-Making

Relying on surrogates to make decisions when patients cannot speak for themselves is the primary mechanism through which healthcare professionals can demonstrate respect for persons. The responsibility of surrogate decision makers is to highlight the patient’s voice in treatment decisions. This responsibility is formalized in the broadly-accepted ethical standards for surrogate decision-making (Jonsen et al. 2015), and specified in most state statutes (Pope 2012, 1077). SDMs are obligated to honor any previously expressed wishes of the patient. In the absence of expressed wishes, they must apply a substituted judgment standard. This standard involves invoking the patient’s values to make the decision the patient would make for themselves. Absent sufficient information to apply this standard, decisions should be consistent with the patient’s best interests. For many surrogates, the substituted judgment standard can pose difficulties, for reasons including lack of certainty regarding the patient’s wishes or difficulty understanding the concept. Indeed, any time a surrogate is asked to make valueladen decisions on a patient’s behalf, a risk exists that their interpretation of the patient’s wishes will differ from others’. This can lead to situations in which a surrogate’s decision appears to contradict a patient’s wishes and prompt significant moral distress among healthcare professionals. Clinical ethics consultants are wellpositioned to guide healthcare teams and families through these challenging cases.

26.5

Identifying the Source of Contradiction

To reconcile an apparent contradiction between a surrogate’s decision and the patient’s wishes, clinical ethics consultants must pinpoint the source of contradiction. These cases can be classified into three broad categories. The first, a “True Contradiction,” exists when the surrogate is not applying substituted judgment or fulfilling the patient’s known wishes. Data suggest that even when patients have made their wishes known, surrogates do not necessarily follow them (Ditto et al. 2001). Reasons for True Contradictions may include a surrogate projecting their own values and treatment preferences onto the patient, conflicts of interest, or a surrogates’ own cognitive limitations (Bramstedt 2003, 257). In the second category, “Partial Picture Bias,” the healthcare team or surrogate may lack a full understanding of the patient’s authentic values and preferences. In these cases, one party is accurately representing the patient’s wishes, while the other has an incorrect or incomplete understanding. Reasons for divergence in these cases may include that fact that the healthcare team only interacted with the patient for a snapshot in time, the healthcare team’s or surrogate’s discussions with the patient were not particularly robust or nuanced, or the patient’s statements were misinterpreted. It may also be that either the patient or surrogate lacked adequate

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clinical knowledge at the time they expressed their preference, and once any clinical misconceptions are corrected, the contradiction dissipates. The final category, “Internal Contradiction,” reflects times when a patient has expressed mutually exclusive, inconsistent wishes or values. For example, a patient may make opposing statements to different stakeholders (e.g. nurse, family) about the same issue. Alternatively, a patient may express strong preferences about two distinct issues (e.g. “I never want to be on dialysis” and “I want to live”) that cannot both be honored in their current medical condition. In these cases, the surrogate may make a decision that appears contrary to wishes the patient has expressed but is equally consistent with other values the patient has shared, as the patient may not have prioritized or had clarity regarding their own differing preferences. The substituted judgment standard required of SDMs generally assumes that patients have consistent and unambiguous preferences, and express them in the same way to all those involved in their care, which is not always the case (Eves and Esplin 2015).

26.6

Clarifying the Patient’s Wishes

When there is an apparent contradiction between the patient’s wishes and a surrogate’s request, the clinical ethics consultant’s first task is to clarify the patient’s authentic wishes by examining the context of the contradiction. This step involves resolving any conflict of facts to potentially resolve the ethical dilemma (DuBois 2008, 46–57). Ethics consultants should explore five key contextual elements: Capacity considerations; Clarity of the patient’s statements; Clinical information and understanding; Consistency of the patient’s preferences; and Concordance with the patient’s prior decisions and articulation of values (Table 26.1). After examining these contextual elements, it should become evident whether there is a True Contradiction, Partial Picture Bias, or an Internal Contradiction. In Case 2, Ms. Jones expressed two distinct preferences to her healthcare team. One was substantive, specifying the duration of life-sustaining treatment she would want should she experience a significant complication. The other was procedural; she declined to complete advance directive paperwork, and expressed that she trusted her family to make a decision on her behalf. When the patient suffered an unfortunate clinical decline, her substantive and procedural preferences came into conflict; her preferred decision-makers did not seem to be making the decision that she stated she would make for herself. As outlined in Table 26.1, there are a number of dimensions across which ethics consultants can engage in clarification. In Case 2, the clinical ethics consultant clarified that, despite the apparent tension between substantive and procedural preferences, this was a case of Partial Picture Bias. In a family meeting, the healthcare team shared the instructions the patient had given them regarding being on life support for only seven days. Although there was no reason to question the patient’s decision-making capacity at the time she shared those wishes (Capacity) and the patient’s instructions were relatively clear on their face (Clarity), the ethics consultant acknowledged the family’s deeper

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Table 26.1 The five Cs for determining the source of contradiction Contextual element Capacity issues

Clarity of patient’s expression

Clinical information & understanding

Consistency of patient’s preferences Concordance with prior articulation of values

Relevant questions Are there reasons to question the patient’s capacity at the time they stated their wishes? Are there reasons to question the surrogate’s cognitive ability to act as a decision maker? Were the patient’s statements clear and unambiguous? Did the patient provide reasons supporting their statements? Did the patient communicate acceptance of the consequences? Was the amount and quality of clinical information provided sufficient? Did the patient have adequate clinical understanding when they made their statements? Is the surrogate’s decision based on adequate clinical understanding? Has the clinical picture changed since the patient made their statements? Did the patient express the same preference multiple times and to multiple stakeholders? Is this preference consistent with the patient’s previous treatment choices? Is this preference consistent with the patient’s other life choices?

Yes--> No-->

Likely

Partial picture bias Likely Possible

Yes--> No-->

Likely Possible

Possible Possible

Yes--> No-->

Likely

Possible Likely

Likely

Yes--> No-->

Likely Possible

Possible Likely

Possible Possible

Yes--> No-->

Likely Possible

Possible Likely

Possible Possible

Yes--> No-->

Likely

Possible Likely

Likely

Yes--> No-->

Likely

Possible Likely

Likely

Yes--> No-->

Likely

Likely Likely

Possible

True contradiction

Yes--> No-->

Likely

Yes--> No-->

Likely

Yes--> No-->

Likely

Yes--> No-->

Likely

Internal contradiction Likely

Possible

Likely Possible

Possible

Likely

Possible Likely

Likely

Likely

Likely

Likely

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knowledge of the patient and invited their perspectives. The family recounted that the patient had previously overcome cancer against all odds and during her treatment had thanked her family for getting her through critical times (Concordance). They also shared that she had been on a ventilator before; during her cancer treatment, she contracted the flu and required mechanical ventilation for precisely seven days. They believed that their mother’s apparent preference to be on life-sustaining treatment “only for seven days” may have reflected a misunderstanding of the question, rather than an expression of future wishes (Clinical). They were unanimous that she would want to remain on the ventilator at this time. Thus, the source of the apparent contradiction was the Partial Picture Bias of the healthcare team. Of note, had exploring Ms. Jones’ preferences through the Five Cs elicited different facts, an alternative source of contradiction may have been revealed. For example, if Ms. Jones had never been on a ventilator for precisely seven days, context that revealed potential clinical misunderstanding, the discordance between her substantive and procedural preferences would not have been as easily resolved. In such a case, Ms. Jones may have expressed mutually exclusive wishes, revealing a case of Internal Contradiction. Cases like this highlight the danger of rigidly adhering to a patient’s prior statements without further exploration (Fins et al. 2005, 57). Notably, an empirical study conducted by Fins et al. (2005, 55–56) found that neither patients nor surrogate decision makers “viewed deviation from patient instructions as a violation of the principal’s autonomy.” Rather, they emphasized the value of “nuanced and contextually informed moral judgments.” The Five Cs approach seeks to enhance surrogate decision making by eliciting and honoring such nuanced and contextually informed judgments.

26.7

Establishing the Ethical Framework

The clinical ethics consultant’s next task is to establish an ethical framework that reconciles the differences between the patient’s expressed wishes and the surrogate’s request. Importantly, the ethically supportable outcome will depend on the source of the contradiction (Table 26.2). First, in cases of True Contradiction, the healthcare team has an ethical responsibility to honor the patient’s wishes over the surrogate’s objection. As in Case 1, it is ethically impermissible to defer to the family when the patient’s wishes are Table 26.2 Ethical framework for the three sources of contradiction Source of contradiction True Contradiction Partial Picture Bias Internal Contradiction

Ethical obligation Honor the patient’s wishes over the surrogate’s objection Honor the patient’s wishes as more fully understood through the clarification process Permit the surrogate to prioritize competing patient wishes

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eminently clear. Second, if a Partial Picture Bias is revealed, and the clarification process leads to harmony between a surrogate’s request and the patient’s authentic preferences, it is ethically appropriate to defer to the surrogate’s contextualized articulation of the patient’s wishes. Finally, when there is Internal Contradiction, it is most ethically supportable to allow the surrogate to prioritize contradictory preferences. In the setting of uncertainty about a patient’s wishes, a surrogate who has an ongoing relationship with the patient has greater moral standing than the healthcare team to make the final decision. Notably, a surrogate may be unsure about what the right decision is. The goal is to make a decision that best aligns with who the patient is as a person (Sulmasy and Snyder 2010), in the context of all of the information gathered about the patient through the clarification process.

26.8

Supporting Stakeholders

Cases in which surrogates appear to contradict a patient’s wishes can be challenging for both healthcare professionals and surrogates. When faced with scenarios of True Contradiction, many healthcare professionals may inappropriately accede to surrogate demands (Berger et al. 2008, 49). These professionals may prioritize the psychosocial interests of family members, feel that it is more convenient to listen to the surrogate, or fear legal action (Westphal and McKee 2009). Surrogates who are challenged or told they are contradicting their loved one may feel their character is being questioned. In these situations, clinical ethics consultants have obligations to both the healthcare team and the surrogate. They should help the healthcare team navigate practical next steps, for instance by writing a validating chart note or collaborating with the institution’s law department as necessary when implementing a plan of care over a surrogate’s objection. Clinical ethics consultants can support surrogates by helping them think through the decision-making process and potentially providing emotional support (directly or with appropriate referrals) while they confront a loved one’s preferences they wish were different. In cases of Partial Picture Bias, ethics consultants can facilitate an ethically supportable consensus regarding the patient’s wishes through the clarification process (American Society for Bioethics and Humanities 2011). For healthcare professionals in particular, clinical ethics consultants can elucidate why it is ethically supportable to invite new information and reconcile competing perspectives, as well as why a patient’s wishes must be respected even if they are different than initially believed. With respect to surrogates, clinical ethics consultants can help them feel heard throughout the clarification process by acknowledging their insights, and identifying what additional information—clinical or values-based—is needed. They can also help fill in gaps in clinical information by serving as a “clinical translator,” which is especially important when the relationship between the surrogate(s) and healthcare team has been damaged. Building a consensus among healthcare professionals and surrogates grounded in newly contextualized facts and good process will help stakeholders feel confident that the patient’s wishes are truly being followed.

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Finally, in cases of Internal Contradiction, clinical ethics consultants can support surrogates by validating their feelings of uncertainty, and by acknowledging that either decision will contradict one or more of the patient’s wishes. They can also utilize strategies for alleviating the emotional burden on these surrogates. For example, consultants can urge the team to make a recommendation about a plan of care to guide the family given the patient’s contradictory values. For both healthcare professionals and surrogates, clinical ethics consultants can explain why it is ethically optimal for the surrogate to prioritize among the patient’s mutually exclusive values.

26.9

Conclusion

Cases in which surrogates appear to contradict a patient’s wishes can be challenging for healthcare professionals as well as the patient, surrogate and other interested parties. In this chapter, a practical approach has been offered to systematically identify and assess the source of conflict and to resolve such cases in a manner that honors the patient’s authentic wishes or values and mitigates moral distress among stakeholders. The authors have identified three categories that broadly capture the reasons that a surrogate’s decision may appear to contradict a patient’s wishes: (1) True Contradiction; (2) Partial Picture Bias; and (3) Internal Contradiction. By engaging in a focused exploration of five key contextual elements, The Five Cs, clinical ethics consultants should be able to pinpoint which of the three categories is relevant and clarify the patient’s authentic preferences. Using this process, ethics consultants are well-positioned to provide guidance on the course of action that most fully honors the patient and their preferences, and to support stakeholders in implementing plans to uphold those preferences.

References American Society for Bioethics and Humanities. 2011. Core Competencies for Healthcare Ethics Consultants. 2nd ed. Glenview, IL: American Society for Bioethics and Humanities. Berger, J.T., E.G. DeRenzo, and J. Schwartz. 2008. Surrogate Decision Making: Reconciling Ethical Theory and Clinical Practice. Annals of Internal Medicine 149 (1): 48–53. https://doi. org/10.7326/0003-4819-149-1-200807010-00010. Bramstedt, K.A. 2003. Questioning the Decision-Making Capacity of Surrogates: Surrogate Decision-Making Capacity. Internal Medicine Journal 33 (5–6): 257–259. https://doi.org/10. 1046/j.1445-5994.2003.00386.x. Ditto, Peter H., Joseph H. Danks, William D. Smucker, Jamila Bookwala, Kristen M. Coppola, Rebecca Dresser, Angela Fagerlin, et al. 2001, February 12. Advance Directives as Acts of Communication: A Randomized Controlled Trial. Archives of Internal Medicine 161 (3): 421. https://doi.org/10.1001/archinte.161.3.421. DuBois, James M. 2008. Ethics in Mental Health Research. New York: Oxford University Press.

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Eves, Margot M., and Bryn S. Esplin. 2015. “She Just Doesn’t Know Him Like We Do”: Illuminating Complexities in Surrogate Decision Making. The Journal of Clinical Ethics 26 (4 (Winter 2015)): 350–354. Fins, Joseph J., Barbara S. Maltby, Erika Friedmann, Michele G. Greene, Kaye Norris, Ronald Adelman, and Ira Byock. 2005. Contracts, Covenants and Advance Care Planning: An Empirical Study of the Moral Obligations of Patient and Proxy. Journal of Pain and Symptom Management 29 (1): 55–68. https://doi.org/10.1016/j.jpainsymman.2004.07.004. Jonsen, Albert R., Mark Siegler, and William J. Winslade. 2015. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. 8th ed. New York: McGraw-Hill Education. Pope, Thaddeus M. 2012. Legal Fundamentals of Surrogate Decision Making. Chest 141 (4): 1074–1081. https://doi.org/10.1378/chest.11-2336. Sulmasy, Daniel P., and Lois Snyder. 2010. Substituted Interests and Best Judgments: An Integrated Model of Surrogate Decision Making. JAMA 304 (17): 1946. https://doi.org/10.1001/ jama.2010.1595. Westphal, Dan M., and Stefanie Andrea McKee. 2009. End-of-Life Decision Making in the Intensive Care Unit: Physician and Nurse Perspectives. American Journal of Medical Quality 24 (3): 222–228. https://doi.org/10.1177/1062860608330825.

Chapter 27

Thorny Issues in Clinical Ethics Consultation: A Canadian Perspective on Surrogate Decision Making Concerning Potentially Non-beneficial Care Katarina Lee-Ameduri

Abstract The vast majority of healthcare interventions require consent, both from a legal and ethical perspective. North American healthcare ethics requires healthcare providers to gain informed consent from patients or the patient’s surrogate decision makers (SDM) in the event they do not have the capacity to engage in decision making. The informed consent process includes that the patient or SDM understands the risks, benefits, consequences and alternatives of the intervention. Both law and ethics have consistently supported the notion that patients or their SDM’s may decline medical interventions; however, the areas that remain open to potential strife are situations in which patients and SDMs request or demand initiation or continuation of medical interventions, particularly interventions that are not considered medically beneficial. This chapter explores the lack of consistency in Canada regarding appropriate courses of action when there is a disagreement between healthcare professionals and SDMs regarding withholding life-sustaining treatment, withdrawing life-sustaining-treatment and Do Not Attempt Resuscitation (DNAR) orders. Keywords Surrogate decision making · Healthcare proxies · Do-Not-Resuscitate · DNR · Canadian perspective

27.1

Objectives

1. Provide a legal overview of surrogate decision makers and healthcare proxies in Canada 2. Outline a surrogate decision maker’s ability to consent to the initiation or withdrawal of life-sustaining treatment

K. Lee-Ameduri (*) St. Boniface Hospital, Reseau Compassion Network, Winnipeg, Canada University of Manitoba, Winnipeg, Canada e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_27

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3. Highlight legal constructs in Canada that permit physicians to override a surrogate decision maker’s decisions, specifically regarding the initiation or withdrawal of life-sustaining treatment and unilateral DNAR Orders

27.2

Case One

Mrs. Matthys, a 58-year old woman, presented to the hospital with late-stage Huntington’s Disease along with significant breathing complications due to aspiration pneumonia. She was intubated for her difficulty breathing and was minimally conscious. She scored a 6 out of 30 on a mini-mental status examination. She was initially admitted to the ICU of an acute care facility and eventually stabilized enough to be transferred to a step-down unit near the ICU. She was extubated. She was constantly surrounded by loved ones; her two adult daughters, as well as her sister and brother-inlaw. Mrs. Matthys had been divorced several years prior. Due to Mrs. Matthys’ late stage Huntington’s Disease as well as her constant need for deep suctioning due to her inability to manage her secretions, the clinical care team determined it was in her best interests not to be reintubated in the event that she would decompensate. They believed that in such a situation, she should receive only palliative care support. Mrs. Matthys’ daughters, both of whom were listed as healthcare proxies vehemently opposed this decision. They framed their objections based in the principal idea that Mrs. Matthys would want to “try” everything to extend her life. The healthcare providers and the surrogate decision makers were at an impasse.1

27.3

Informed Consent and Withholding and Withdrawing Life-Sustaining Treatment in Canada

The vast majority of healthcare interventions require consent, both from a legal and ethical perspective. Healthcare providers are under an obligation to gain informed consent from patients or the patient’s surrogate decision makers (SDM)2 regarding healthcare interventions. The informed consent process includes that the patient or SDM understands the risks, benefits, consequences and alternatives of the intervention. The typical exemption from informed consent occurs in situations of emergencies where healthcare providers have a duty to intervene unless definitively informed otherwise of an individual’s preferences of lack of intervention. Both law and ethics have consistently supported the notion that patients or their SDMs may decline medical interventions; however, the areas that remain open to potential strife are 1

Please note that while similar situations have arisen in the clinical ethics experience of Katarina Lee-Ameduri, this case is fictionalized. 2 A surrogate decision maker (also known as a substitute decision maker) is an individual who engages in medical decisions for an individual in the event they are not able to engage in medical decision making.

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situations in which patients and SDMs request or demand initiation or continuation of medical interventions, particularly interventions that are not considered medically beneficial. While there has been some legal authority presented in Canada regarding the withdrawal of life-sustaining treatment (WDLST) (Bandrauk 2018a, b) there is little legal authority regarding a healthcare provider’s withholding LST (WHLST) or the refusal to resuscitate a patient in the event that the patient requires chest compressions or intubation.3 The above clinical ethics case involves both the healthcare providers refusing further escalation of medical interventions as well as refusing to resuscitate or intubate Mrs. Matthys if she decompensated. Respect for the autonomous decision making of the patient or their dulydesignated surrogate is the most widely accepted ethical principle in North American healthcare ethics consultation. However, Canadians live in a socialized healthcare environment that implicitly has restrictions on autonomous decision making. While healthcare providers interact with patients and their SDMs in order to elucidate patient preferences and values, there are limits to autonomous decision making. There are numerous interventions that are not offered or provided to patients due to limits on medical benefit and limitations on resources (Bandrauk 2018a, b). Moreover, simply because a patient or SDM has requested an intervention does not inherently require a healthcare professional to provide that intervention. Rationales for a healthcare provider refusing an intervention range from the intervention being medically inappropriate to the healthcare professional conscientiously objecting. As such, while Canadians have fully adopted an autonomous decision-making framework in healthcare, it is not unlimited. Notably in Canada, there are significant differences among provinces and territories regarding legislation that protects SDM’s. The only guarantee in the Canadian context is that if a patient appoints a healthcare proxy, that individual has legal protection to make medical decisions on behalf of that patient. Importantly, a Healthcare Proxy is not a Power of Attorney, a common misunderstanding. A Power of Attorney addresses financial matters for an individual if they are unable to do so. In the absence of a properly executed healthcare proxy, there are inconsistencies in Canada regarding SDMs. For example, in Saskatchewan, there is legislation that legally protects a patient’s spouse to act as a SDM, while in Manitoba there is no legislation legally protecting a patient’s spouse to act as a SDM (Substitute Healthcare. DecisionMaker’s Act (SK, 1997) vs. The Healthcare Directives Act (MB, 1992). However, as Mrs. Matthys had appointed her two daughters as healthcare proxies, they would be legally protected as decision makers in both Saskatchewan and Manitoba, as long as the document was appropriately executed. The vast majority of Canadian provinces do not have legal authority to help assist regarding the WDLST or DNAR orders. However, the current most persuasive legal authority came from the Supreme Court of Canada reviewing a case in Ontario. In

3

Please note that situations like this are often referred to as unilateral DNARs (Do Not Attempt Resuscitation). However, please note that there are two occurrences that may happen: (1) the healthcare provider informs the patient or SDM that they will not resuscitate and (2) the healthcare provider does not inform the patient they are DNAR.

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Rasouli, the “Court held that consent is required for WDLST for a patient who would be expected to die imminently without that LST” (Bandrauk 2018a, b; Hawryluck et al. 2014). However, the Court did not state whether WDLST or WHLST were equal and the “Court referred to provincial legislation for resolving the disagreement between [healthcare professionals] and family/SDM regarding WDLST. Not every province/territory has relevant legislation to follow.” (Bandrauk 2018a, b). Essentially the Court ruled that a physician would have to “convince [Ontario’s] Consent and Capacity Board that the SDM was not acting either in accordance with the patient’s most recent wishes or, if unknown, what would be in his or her best interests.” (Yanke et al. 2018). Moreover, the Court stated that this consent requirement was only for Rasouli, but did not specify any other requirements for future cases. Importantly, many provinces and territories do not have review boards to address these types of cases. While there is minimal case law regarding WHLST, the Manitoba Court of Queen’s Bench “concluded based on the pre-Charter case law that ‘a decision not to provide treatment is exclusively within the purview of the doctor. . .the courts would not interfere with a medical decision not to provide treatment.’” (Young 2012). What these two cases evidence is that there is not a consistent legal framework in Canada regarding WHLST or WDLST. In practice, support for WHLST and WDLST is left to the individual provincial/territorial College of Physicians and Surgeons Standard Practice Guidelines. If Mrs. Matthys was in Manitoba, her physicians would be able to WHLST, WDLST and enter a DNAR. Per the College of Physicians and Surgeons of Manitoba, there is a formal notice requirement to inform the patient’s SDM of this decision. (College of Physicians and Surgeons of Manitoba, Standards of Practice of Medicine 2019). In Ontario, Mrs. Matthys’ case would likely go before a review board to determine whether deep suctioning would continue, and it is unclear whether there would be any consideration given to the fact that Mrs. Matthys’ physicians were WHLST in the event that she would depreciate.

27.4

Ethical Justifications for Overriding Surrogate Decision Making

The ethical justifications as to whether a healthcare provider may disregard a patient or SDM’s requests for further medical intervention or resuscitation and intubation are primarily focused on an understanding of the “best interests” test. The healthcare professional has determined that it is no longer in the medical best interests of the patient to continue interventions. These conversations are based on the central question as to whether the proposed interventions may have any potentiality for benefit. Benefit is often difficult to define, i.e., what one individual may define as a benefit, another may see as a burden. In the clinical context, benefit typically references whether the intervention will improve the patient’s medical situation or improve the patient’s quality of life. The College of Physicians and Surgeons of Manitoba “describes medical criteria of benefit and the achievement of ‘minimal goals,’ as ‘the maintenance of or recovery to a level of cerebral function that enables the patient to: achieve awareness of self; achieve awareness of existence; and experience his/her own environment.’” (Hawryluck 2012).

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In the case of Mrs. Matthys, the only potential benefit or further benefit is preventing death and prolonging life. Continued treatment has very little chance to improve quality of life and Mrs. Matthys would not be able to achieve minimal goals in activities of daily living. Additionally, Mrs. Matthys’ healthcare providers viewed continual deep suctioning as causing Mrs. Matthys great pain, and that if her breathing would depreciate to the point in which she would need to be intubated, it was very unlikely that she would regain consciousness. She would continue to exist on life support with little interaction with others. Mrs. Matthys’ healthcare proxies viewed that she would want to try everything, including intubation regardless of the potentiality of improvement. Unlike many other cases in which there is disagreement between healthcare providers and a patient’s SDM, the viewpoint of Mrs. Matthys’ healthcare proxies was that she was entitled to a right to try, even if there was no medical benefit. They argued that merely trying an intervention was something she greatly valued, even if there was little to no chance for benefit. The problem with many cases such as that of Mrs. Matthys is that SDMs may argue that the patient values having every opportunity for life or every opportunity for the chance of life. The ethical issue becomes the tension between the medical best interest of the patient in contradiction with the patient’s values as the SDM interprets them. From this disagreement the following questions are asked: “Who are you to determine what this patient values and who gives you the right to make that decision?” Essentially in Canada, great deference is given to the healthcare providers to make this decision. Some will argue that this is appropriate because accessing healthcare does not guarantee an individual to an affirmative right to every intervention; others will argue that as benefit is a somewhat subjective concept, the autonomous decision making of patients or their SDMs outweighs healthcare providers views of best interest standards. While many of these cases may be addressed judicially, many more of these patients die prior to their cases ever being adjudicated, and many reach an uneasy compromise in the clinical setting. The lack of judicial case law and consistency in Canada may owe to the fact that many of these patients would not live long enough to have an extended court process.

27.5

Conclusion – A Morally Distressing Situation

While this chapter was meant to highlight some of the key legal and ethical components in situations like Mrs. Matthys, it is also important to note that these situations involve many different individuals who may be experiencing moral distress. First, there is a reliance upon SDMs to engage with healthcare professionals. While many SDMs appropriately express a patient’s values and wishes, there is always the potentiality that the SDM may be making decisions on behalf of the patient that do not align with the patient’s values or preferences. This may be done intentionally or unintentionally, as SDMs are often grappling with their own feelings, perceptions and experiences while acting as a SDM. Second, healthcare professionals are the ones who actually physically engage with the patient. For instance,

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in the case of Mrs. Matthys the healthcare professionals would see her in pain every time the clinician provided her with deep suctioning and this proximity caused a sense of whether what they were doing was “the right thing.” Moreover, attempting resuscitation on a person is not an insignificant event, as there is often considerable physical harm including the breaking of ribs in the process. These situations often invoke the support of a clinical ethics consultant. The typical role of the ethics consultant is to understand patient preferences and provide mediation strategies. These recommendations are only as good as the willingness of the healthcare professionals to provide interventions. There are situations in which clinical ethics consultants may provide a recommendation that has its own limitations. For instance, if the ethics consultant agrees with the healthcare team’s assessment that WHLST, WDLST or DNAR are appropriate this can often erode trust between the clinical ethics consultant and the patient’s SDMs. While there will not be a one-size-fits all approach to adequately address these types of situations, there is very little consistency in Canada regarding appropriate courses of action when there is a disagreement between healthcare professionals and SDMs regarding WHLST, WDLST and DNAR orders. The vast majority of guidance comes from provincial and territorial Colleges of Physicians and Surgeons creating their own guidelines. It would serve both the Canadian public and Canadian healthcare providers greatly to address these issues in a cohesive manner with support and input from an interdisciplinary approach.

References Bandrauk, Natalie, James Downar, and Bojan Paunovic. 2018a. Withholding and Withdrawing Life-Sustaining Treatment: The Canadian Critical Care Society Position Paper. Bojan Canadian Journal of Anesthesia/Journal canadien d’anesthésie 65 (1): 105–122. Bandrauk, Natalie, James Downar, and Paunovic. 2018b. In Reply: Reappraisal of the Canadian Critical Care Society’s Position on Withholding and Withdrawing Life-Sustaining Treatment. Bojan Canadian Journal of Anesthesia 65 (7): 845–846. Hawryluck, Laura. 2012. A Response to “Why Withdrawing Life-Sustaining Treatment Should Not Require ‘Rasouli Consent’”. (Canada, Ontario). McGill Journal of Law and Health 6 (2): 108. Hawryluck, Laura, Andrew J. Baker, Andrew Faith, and Jeffrey M. Singh. 2014. The Future of Decision Making in Critical Care After Cuthbertson v. Rasouli. Canadian Journal of Anesthesia 61 (10): 951–958. College of Physicians and Surgeons of Manitoba. 2019. Standards of Practice of Medicine: Schedule D. Withholding and Withdrawing Life-Sustaining Treatment. The Health Care Directives and Substitute Health Care Decision-Maker’s Act (SK, 1997) vs. The Health Care Directives Act (MB, 1992). Yanke, Greg, Mohamed Rady, and Joseph Verheijde. 2018. Reappraisal of the Canadian Critical Care Society’s Position on Withholding and Withdrawing Life-Sustaining Treatment. Canadian Journal of Anesthesia 65 (7): 843–844. Young, Hilary. 2012. Why Withdrawing Life-Sustaining Treatment Should Not Require “Rasouli Consent”. (Canada, Ontario). McGill Journal of Law and Health 6 (2): 65. referencing Sawatzky vs. Riverview Health Centre.

Part IV

Introduction to Part IV: Organizational Issues in U.S. Ethics Consultation

This two-essay part presents a window into the evolving nature of ethics consultation in the US. The essays present two different kinds of organizational issues which are to greater and lesser extents peculiar to the fragmented healthcare financing and delivery system of the US. Thus, no similar essays are provided from European authors. Patrick McCruden’s essay provides an example of an ethics consultation involving a business strategy of a regional healthcare delivery organization. It is organizational ethics in the sense of considering conflicting ethical obligations of the organization to various stakeholders such as a physician’s practice group versus the local community. This is a thorny and perennial type of issue in the US because healthcare institutions are dependent upon generating revenues within the context of the markets and reimbursement systems. Yet they also exist for a particular mission, i.e. to serve various communities. These considerations must always be balanced and the degree to which this essay contains lessons for ethicists in other nations will depend upon structural features of the delivery and finance models in those nations. The essay by Mark Repenshek reflects on the organization of an ethics consultation service. He argues that the traditional model of consultation on demand by a defined expert is suboptimal and that embedded structures can better address ethical issues proactively. Every health system would seem to have an obligation to deliver ethics services in an efficient and effective manner. As a result, this essay provides food for thought for all ethics consultants. Organizational issues in both of these senses are thorny issues in that they have a perennial character that is unlikely to achieve a once-and-for-all resolution. We expect that the universally increasing pressures for healthcare to be fiscally efficient and for ethicists to show their effectiveness, will make these reflections more relevant to ethicist everywhere in the years to come.

Chapter 28

Moving Ethics Upstream: Shifting Clinical Ethics Consultation from Volume to Value Mark Repenshek

Abstract A common theme among practitioners in clinical ethics consultation (CEC) is the idea of moving “upstream.” In other words, shifting a service from merely reacting to requests for clinical consultation to proactively integrating standardized resources to identify and address clinical ethics issues is highly desirable. This article will focus on the necessary infrastructure as well as the systematic and standardized resources that enable an Ethics Consultation Service (ECS) to make this shift successfully. Central to this success is the recognition that a proactive ethics integration model is about embed-and-empower as opposed to deploy-and-opine. Through the use of case study analysis, the article will demonstrate the significantly different outcome a proactive ethics consultation service model achieves when compared to a traditional reactionary model. Keywords Ethics · Consultation · Upstream · Proactive · Cases · Standardization

28.1

Objectives

1. To briefly detail the inadequacies of the traditional paradigm of CEC focused solely on a reactive “deployment model” in which experts are called to resolve ethical dilemmas treating each consult in isolation of the other. 2. To outline a response to the traditional paradigm of an expert-centered deployment model of ethics in deference toward one that embeds systemic approaches and standardized resources for identifying and addressing clinical ethical issues upstream in the existing and emerging clinical and organizational processes as close to the point of services as possible.

M. Repenshek (*) Ascension, St. Louis, Missouri, USA e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_28

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3. Through the use of a single clinical ethics case analysis, demonstrate the different outcomes of these two models relative to ethics committee process, outcome and continuous quality improvement (QI) initiatives.

28.2

Case

A 68-year-old patient is in the ICU with pneumonia requiring dialysis at day 14 with an expected mortality of 90% at one year. The healthcare team is concerned about the risk-benefit profile associated with moving to a tracheostomy. The patient lacks decisionmaking capacity and, appropriately, discussions have occurred with the designated healthcare decision-making proxy who is deferring to the attending physician to “do what is in the patient’s best interests.” The attending physician remains uncertain as to the ethically appropriate course of action. The following sections will analyze how this case would likely be approached by a traditional reactive model of ethics consultation and contrast that with a proactive ethics integration model.

28.2.1 Reactive Clinical Ethics Consultation Model Regardless of whether the health system uses a single expert or team-based approach to CEC, and assuming it would be requested by the attending physician relatively quickly due to the attending’s uncertainty as to the ethically appropriate course of action, the ECS will become aware of the patient only at the point of an ethics consultation request. The ethics consultant will then require time to review the medical record, talk to the relevant stakeholders, gather additional facts, meet as a CEC team (if applicable) and offer a recommendation. This process may or may not involve being a part of an additional care conference with the identified proxy. All of these steps add additional delay regarding the matter of a tracheostomy thereby changing the risk/benefit ratio as the consultation process unfolds. In the best of scenarios, where the patient remains clinically stable, the risk/benefit ratio is changed only slightly as the ethics consultant is able to respond efficiently and effectively. In the worst of scenarios, where any delay in care would have negative clinical implications, standard processes associated with quality CEC may result in additional comorbidities, or potentially, mortality. In both scenarios, high-quality ethics consultation is being presumed. Should that not be the case, deficiencies in the quality of CEC will only magnify the problem.

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28.2.2 Proactive Clinical Ethics Consultation Model In a proactive model, the idea of requesting an ethics consultation or identifying what would constitute a “similar case” is not the “trigger” for the consult. In other words, because a proactive model is based on embedding systematic approaches and standardized resources for identifying and addressing clinical ethical issues upstream in existing and emerging clinical and organizational processes as close to the point of service as possible, membership of the ECS is a significant model differentiator. In a proactive model ethics committee membership would necessarily include members of the healthcare team that are involved in patient care in the Intensive Care Unit (ICU) given the fact that the ICU, by its very nature, involves complex ethical dimensions of clinical care. These ethics committee members are trained to intentionally look for existing infrastructure in which to embed systematic approaches and standardized resources that would attempt to identify and address clinical ethics issues in anticipation of a dilemma or crisis. In this particular example the members of the ethics committee who, in their employed role already in the ICU, would look to rounds as a systematic and standardized process in which a template rounding tool serves as a resource to the entire care team. In order to ensure that ethics consultation is not reactionary and only used in response to a dilemma or crisis, the ethics committee would focus its resources on enhancing the rounding tool to address issues that are likely precursors to traditional ethical dilemmas. In this specific case, focusing on key questions prior to or in anticipation of the common clinical decision point of endotracheal tube to tracheostomy serves to move ethics consultation “upstream.” (Venkat 2013) Questions to consider embedding into the rounding template might include: • • • •

Has the decision-making capacity of the patient been identified and documented? Does the patient have an advance directive in the chart? Has it been reviewed? Has the patient identified a proxy/agent/surrogate decision maker? Has a care conference been held to determine goals of care within 72 h of admission? • Has the patient’s code status been identified and documented? Articulating these questions does not suggest that including them in a rounding template addressed in daily rounds by the ICU interdisciplinary care team would eliminate all need for CEC. However, embedding and addressing these questions in daily rounds does position the care team, and in this instance the attending physician, to be well aware of the patient’s preferences in advance of the decision regarding a tracheostomy (if able to be discerned prior to losing decision-making capacity), or at the very least, may eliminate some of the uncertainty currently plaguing the attending physician regarding this decision on day 14. Most importantly, the work of the ethics committee is of service to the patient, family and care team well in advance of a dilemma or crisis. Put simply, the work is beyond the idea of “moving upstream,” rather proactive ethics integration is simply a part of the way in which the ICU operates.

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Relying on the work of prior authors for a more thorough assessment of the current state of clinical ethics, this article will only briefly describe the nature of the problem if the field remains predominantly focused on an expert-centered deployment model for CEC. This brief assessment will serve to outline a response to the traditional paradigm in deference toward one that embeds systematic approaches and standardized resources for identifying and addressing clinical ethical issues upstream in the existing and emerging clinical and organizational processes as close to the patient as possible.

28.3

Nature of the Problem

The current reality of ethics consultation, often confined to the walls of the acute care setting, is described well by John Paul Slosar: Historically, clinical ethics consultation has been a reactive endeavor epitomized, if not regaled, by tales of the “Friday afternoon consult” regarding the procedure scheduled for first thing Monday morning or, worse, the 2:00 a.m. phone call regarding the mother-to-be in distress. In the best-case scenario, we are able to provide quick reassurance that the “medically appropriate” course of action is also “ethically appropriate.” Alternatively and less desirably, we may be called upon to mediate an entrenched and irresolvable conflict between a patient’s family and care-team after a 60 day stay in the ICU (Slosar 2016). Given how all too familiar this scenario may be for many of us, it seems worth noting that the collective dissatisfaction of such an approach likewise continues to occupy the narrative of ethics consultation. Matthew Kenney argues the collective dissatisfaction in continuing this type of approach is predicated on three faulty assumptions that seems to maintain the need for a “expert-centered” model: (1) all ethics consultations are alike, (2) we must rely on a ‘deployment model’ in which we call experts to resolve ethical dilemmas, and (3) the way to increase capacity in ethics consultation services is to increase the number of full-time professional ethicists, in other words, create job security for those of us who chose this as a vocation (Kenney 2018). To be clear, this critique does not necessarily imply there is no need for professional ethicists. Rather, when able to utilize the expertise of the ethicist at her highest level of practice, time traditionally devoted to CEC that may not require that expertise can be devoted to infrastructure development, education and training necessary to fully actualize the potential of the ethics committee and its membership outside the confines of the recurring meetings.

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Constructing a Proactive Ethics Integration Model

The idea of improving the institutional capacity to influence clinical decision making in anticipation of potential ethical concerns is not new. What is new is the focus on three areas essential to a model of proactive integration: • the design of systematic approaches and standardized resources • for identifying and addressing clinical ethics issues upstream • into existing and emerging clinical and organizational processes as close to the point of service as possible. By focusing on systematic approaches and standardized resources, elements of process and practice are a priority without making moral claims about a standard response to particular clinical ethics issues (Cherry 2018).

28.4.1 Systematic Approaches and Standardized Resources Before one can begin to contemplate what it means to identify ethical issues “upstream” the matter of what constitutes an ethics consult is a helpful place for exploring standardization. The American Society for Bioethics and the Humanities (ASBH) defines ethics consultation as “a set of services provided by an individual or a group in response to questions from patients, families, surrogates, healthcare providers, or other involved parties who seek to resolve uncertainty or conflict regarding value-laden concerns that emerge in healthcare” (ASBH 2011). The Catholic Health Association (CHA) adopts this definition in its Striving for Excellence in Ethics thereby representing some level of consensus and standardization (CHA 2014). A second element of standardization essential to a model of proactive integration is the development of a taxonomy of types of consults along with definitions for each. Evidence for this type work can be found in The Veterans Administration’s IntegratedEthics (VHA 2019), CHA’s Striving for Excellence in Ethics (CHA 2014), ASBH’s Core Competencies (ASBH 2011) and Ascension’s Excellence in Ethics (Kenney 2018). A taxonomy is critical to aligning education and level of service. In other words, not all members of the ethics committee require all the same training to do all the same work. As Becket Gremmels notes, “each kind of consult requires a different skill set and scope of responsibility, and a clear, standard taxonomy permits each person to receive the training they need and to be deployed where their unique skill set is most effective” (Gremmels 2020). An immediate corollary of a standardized taxonomy is the consideration of ethics committee membership that is effectively integrated within the institution to execute on a proactive consultation strategy. In this way, ethics committee membership and recruitment are profoundly intentional.

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Once a standardized taxonomy is developed, resources that can support the taxonomy are critical. These include, but are not limited to, standardized charters of ethics committee members, identifying the elements of and content for a core curriculum for ethics committee members, training targeted to ethics committee members engaged in patient specific ethics consultation, CEC deliberation models or methodology, and data capture and utilization.

28.4.2 Identifying and Addressing Clinical Ethics Issues Central to ethics consultation moving from a reactionary approach to more proactive service is the idea of early identification or indication of the likelihood of the need for CEC. Ideally, a list of indicators that would help care teams recognize the potential need for CEC would avoid the consult request that comes only after positions have been entrenched or irresolvable (Pavlish et al. 2011). Such a set of indicators is also helpful to move CEC out of the paradigm of resolving dilemmas and into the realm of promoting human dignity and human flourishing. This is not to suggest that values conflict will be jettisoned as a legitimate reason for ethics consultation, rather CEC should not be confined only to instances of conflict or dilemmas. A proactive ethics integration model seeks to define indicators for CEC that involve resolution of two or more positive values. Examples might include clinical encounters where multiple positive outcomes of an intervention are likely to result, yet the only focus has been the physiologic outcome, absent the multiple dimensions of person-centered care (e.g., spiritual, emotional, psychological, or relational). Put simply, this may mean CEC would serve as a beneficial resource to optimize the patient’s ability to flourish amidst a number of positive outcomes and/or goods. Typically, healthcare teams overlook this context as an encounter requiring CEC, especially when it is only called to solve dilemmas or resolve conflict situations. A broader consideration of the work of an ECS focused on proactive ethics integration may lead to a more general set of indicators about when to call for an ethics consult, similar to those offered by John Paul Slosar: 1. Any salient moral values or personal goals of the patient or patient’s family that are impacted by the illness, injury or plan of care; 2. Any goods or harms that may be in or come into conflict with one another; 3. Any lack of clarity regarding the goals of treatment, which may or may not lead to conflict regarding those goals; and 4. Any ambiguity about the application of organizational policy (e.g., Ethical and Religious Directives for Catholic Healthcare Services)

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In this way, CEC is less about mediating conflict or convincing relevant decisionmakers to follow clinical practice standards, but rather to help all members of the care team, with the person at the center of the team, to appreciate the limits and possibilities of the medical intervention at hand in light of the dignity of the person as patient.

28.4.3 Integrating into Existing and Emerging Clinical and Organizational Processes Integration by its very nature is an ongoing process. The work of a proactive ethics integration model is finding key processes within established clinical and organizational structures to allow for ethics to be a part of those structures, as opposed to added-on, or worse, completely separate from these structures. Daily safety or clinical rounds in an ICU serves as a prime example. In many ICUs across the country, rounds occur on a frequent and regular basis. Often within a “rounding” structure, multiple disciplines that are part of the care team discuss the patient’s ongoing needs, holistically considered. The multidisciplinary nature of the team allows for the patient’s holistic care needs to be addressed immediately, or at the very least a plan can be put into place to address the need in the near term. It is also common that these rounds occur without any dilemma surfacing. In a traditional reactionary model, no dilemma likely means no consult. Whereas, in a proactive integrated model, no dilemma likely means early, and ongoing integration is effective.

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Conclusion

As I reflect on what it means to move clinical ethics upstream, I recall two significant moments in my professional career that have come to illustrate a shift in my understanding of distinct models of ethics consultation: (1) when I was handed my own pager, and (2) when I turned in my pager. The former was enveloped with innumerable themes that reinforced the expert-centered model in which I was trained. Messages like “you are now a trusted resource within the clinical community,” “your expertise is needed at all times,” “your skill set is so critical that reaching you anywhere is essential to the organization,” “there is an appropriate urgency in what you can bring to the clinical encounter,” and most simply “we need you.” There is also powerful symbolism within our healthcare institutions that comes with carrying a pager. Namely, whoever you are and whatever it is that you do, it must be important to this organization. My own response to the vibrating sound of the device when paged was a learned behavior that involved the almost ritual-like reach to my belt, a quasi-

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contemplative look to the device to determine the urgency of the request based on the message, followed by an abrupt interruption of my work announcing, “excuse me, I have been paged and need to respond to this request.” Essentially, the expertcentered model was continuously self-referential and reinforcing. Contrast that experience with turning in my pager. Here, too, the action was enveloped with innumerable themes that reinforced a model, but in this instance the model was one that was in its early stages of bringing a proactive ethics integration structure into existence. Messages like “there must be trust in the ethics committee, that with the right infrastructure, resources and education, it will provide a high quality service,” “it is far better that many on the ethics committee are trained to provide high quality service than to rely on the unsustainability of deploying a single ‘expert,’” “ethics committees can do more than react to each case as an isolated incident and can begin to work proactively throughout the organization to address the need,” and most simply “an ethical culture is not created by the work of only one individual.” Essentially, the proactive model is a willingness to create a service that is not contingent upon the clinical ethicist. A proactive ethics integration model is about embed-and-empower as opposed to deploy-and-opine. Again, as mentioned earlier, I am not suggesting there is no longer a need for the trained ethicist. It is a different need. By embedding systematic resources for identifying and addressing clinical ethics issues upstream in existing and emerging clinical and organizational processes as close to the point of service as possible, sustaining a high quality CEC service is not solely contingent upon the preservation of the role of the ethicist and the extent to which she can meet the demands of clinical consultation, but rather it is primarily in building infrastructure to support the ethical dimensions of clinical care through those who directly care for the patient.

References American Society for Bioethics and Humanities. 2011. Core Competencies for Health Care Ethics Consultants. 2nd ed. Glenview, IL: ASBH. http://apps.asbh.org/store/product-details? productId¼95. Accessed 5 Feb. 2020. Catholic Healthcare Association, ed. 2014. Striving for Excellence: A Resource for Catholic Health Ministry. 2nd ed. Catholic Healthcare Association. https://www.chausa.org/store/products/ product?id¼2770. Accessed 5 Feb 2020. Cherry, M. 2018. Bioethics After the Death of God. The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 43 (6): 615–630. Accessed 5 Feb 2020 https:// academic.oup.com/jmp/article/43/6/615/5187528. Gremmels, Becket. 2020. Ethics Consultation Services. In Catholic Health Care Ethics: A Manual for Practitioners, ed. Ted Furton, 3rd ed. Philadelphia, PA: National Catholic Bioethics Center. 6.1-6.15. Kenney, M. 2018. A Systematic Approach to Proactive Ethics Integration. The National Catholic Bioethics Quarterly 18 (1): 93–112. Accesses 5 Feb 2020 https://www.pdcnet.org/ncbq/content/ ncbq_2018_0018_0001_0093_0112. Murphy, K. 2006. A ‘next generation’ ethics committee. Health Progress 87(March–April 2006): 26–30.

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Pavlish, C., K. Brown-Saltzman, M. Hersh, M. Shirk, and O. Nudelman. 2011. Early Indicators and Risk Factors for Ethical Issues in Clinical Practice. Journal of Nursing Scholarship 43 (1): 13–21. Accessed 6 Feb 2020. https://pubmed.ncbi.nlm.nih.gov/21342420/. Slosar, J.P. 2016. Embedding Clinical Ethicists Upstream: What Non-Ethicists Need to Know. HCEUSA 24 (3). https://www.chausa.org/publications/health-care-ethics-usa/article/summer2016/embedding-clinical-ethics-upstream-what-non-ethicists-need-to-know. Venkat, A. 2013. The Threshold Moment: Ethical Tensions Surrounding Decisions Making on Tracheostomy for Patients in the Intensive Care Unit. Journal of Clinical Ethics 24 (2): 135–143. Veterans Health Administration. IntegratedEthics – National Center for Ethics. 14 Aug. 2019. https://www.ethics.va.gov/integratedethics.asp. Accessed 5 Feb 2020.

Chapter 29

The Tension Between “Margin and Mission” as an Ethical Issue in Healthcare Patrick J. McCruden

Abstract It is non-controversial that clinical ethics issues frequently arise due to wider structural or organizational ethics issues. A clinical ethics consultant may play an important role in identifying these systemic issues and assisting their organizations as they reflect upon and initiate organizational practices to better reflect their professed ethical commitments. Less clear is the role of the ethics consultant in what might be described as “the business of healthcare,” i.e., business decisions that seem distant from the bedside and the core competencies of the ethics consultant. This case study examines a dilemma between a proposed business venture of a not-forprofit health system that might negatively impact a community asset that promotes a social determinant of health. The case demonstrates how the core competencies of healthcare ethics consultation can be utilized in the setting of business ethics to facilitate the resolution of an ethical dilemma and promote ethics education and leadership development to avoid and address such issues in the future. Keywords Organizational ethics · Organizational identity · Ethics education · Community health

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Objectives

1. Analyze a conflict between two goods, e.g., a conflict between a proposed medical business venture and an existing community asset that promotes a social determinant of health (e.g., access to healthy food) 2. Describe how ethics facilitation can promote an organizational discernment including community advocates 3. Describe how the discernment process can balance margin and mission. 4. Promote proactive strategies to avoid future conflicts such as developing a casebased approach to organizational ethics training for senior leaders.

P. J. McCruden (*) Neiswanger Institute for Bioethics, Loyola University Chicago, Maywood, IL, USA e-mail: [email protected] © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_29

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Case One

St. Gabriel’s Health System has planned the construction of a $75 million multispecialty clinic replacing an aged facility in a distressed part of the city. The new clinic is part of a capital commitment to a physician group promised when the physicians sold their practice to the health system twenty-four months previously. There is a contractual obligation that the new clinic must be constructed and opened within a specified time. The clinic would be built on the site of an existing 1970s era grocery store. Recognizing the importance of the grocery store to the community, St. Gabriel’s administration had met with city planners and the store’s owners (a national grocery chain) to ensure a replacement store could be opened nearby and not negatively impact an important community resource and social determinant of health, i.e., food access. The grocery chain indicated that location had weak financial performance and they projected its closure in the long term, i.e., 2–3 years. The city committed to working with the grocery chain or other developers to build a new grocery store nearby through tax abatements, infrastructure improvements and other forms of public support. Based on this assurance, St. Gabriel’s proceeded with plans to develop the new clinic: capital was secured, architectural plans were completed, and alternative plans were discarded. As the time for completing the real estate transaction drew near, it became clear the new grocery store would not be completed by the time the old store was demolished. Community members voiced concerns that there would be no grocery store for many months while new proposals were evaluated and completed. The health system has a contractual commitment to the physician group and needs to proceed with the proposed development either at the proposed site or choose a new site in a different neighborhood. How should they proceed?

29.3

Can Clinical Ethics Help in Organizational Issues?

The ethics and values of an organization are commonly demonstrated by the policies, activities, decisions and behaviors of persons within the organization (Boyle et al. 2001). A variety of processes can support organizational ethics, e.g., value statements, compliance programs and ethics education programming. The role of ethics committees in supporting organizational ethics is a matter of some debate (Sabin 2016). Clearly, many clinical ethics issues have roots in the practices and organizational decisions of healthcare systems, but much of the “business of healthcare” seems to lie beyond the expertise of the commonly accepted threefold tasks of ethics committees: education, policy development and case consultation (Ross et al. 1993). Even less clear is the role of the professional bioethicist or ethics facilitator in the business of healthcare. Although the clinical ethics consultant would typically not claim expertise in the management and leadership issues of a healthcare

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organization, the case presented above, and its sequelae, highlight how professional ethics facilitation can play a role in an organizational discernment balancing obligations to multiple values and stakeholders. Additionally, this case illustrates how ethics facilitation can lead to proactive strategies for preventing organizational ethics conflicts by training leaders to recognize and address such conflicts in both the clinical and business sector. Among the competencies that have been articulated by the Clinical Ethics Consultation Affairs (CECA) Committee of the American Society for Bioethics and Humanities (ASBH,) several are germane to this particular case including: identifying the nature of the value uncertainty or conflict that underlies the need for healthcare ethics consultation, eliciting the moral views of the involved parties, educating involved parties regarding the ethical dimensions of the consultation and identifying systems issues and follow-up (ASBH 2011). Although these competencies have been articulated in relation to clinical ethics consultation, they are transferable to organizational issues.

29.4

The Competing Identities of an Organization: Discerning an Ethical Resolution

At first glance, the value uncertainty or ethical dilemma might appear to pit the interests of the healthcare organization and its business venture against the community and its interest in maintaining an access point for healthy food. This would be a distortion of the issue. Like many organizations, St. Gabriel’s demonstrates what organizational theorists describe as a “dual identity” (Albert and Whetten 1985). They are a healthcare enterprise, but they are also a ministry of the Catholic Church and a non-profit entity with a mandate to serve the common good and improve community health (McCruden 2013). Certainly, St. Gabriel’s has an organizational imperative and legal obligation to complete a building for the physician stakeholders within a specified period, so this is a realistic value to the organization in their identity as a healthcare enterprise. Additionally, St. Gabriel’s, in its identity as a non-profit serving the common good, must understand and consider the important contribution of the social determinants of health to the overall health of the community (Gottlieb et al. 2019). Finally, the health system in its religious identity must be attentive to the demands of solidarity and subsidiarity especially in relation to the poor and vulnerable including the economically disadvantaged in the community. This understanding of competing commitments was first evidenced when the health system decided to build in a distressed neighborhood, rather than relocate to a more affluent area of the city. It was further evidenced when they engaged the store’s owners and the city in a dialogue regarding the future of the grocery store. It was only based on their confidence of a replacement store being constructed that they proceeded with their plans to acquire the property which would lead to the closure of the old store.

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The value uncertainty in this case may be more accurately described as a conflict between the health system’s identity as a business enterprise and its identity as a non-profit serving the common good. In Catholic healthcare these dual identity conflicts are often portrayed as a “margin vs mission” conflict. (Langley 1998) Additionally there is added complexity in that there may exist two competing goods for the residents of the neighborhood where the clinic might be located. The community residents must determine whether to forego a substantial capital investment in their neighborhood with the accompanying positive impact on employment, property values and neighborhood viability vs. the impact of experiencing a food desert (USDA 2020) for a matter of months. In this case the presence of an experienced ethics facilitator among senior health system leadership facilitated a discernment process that considered the multiple stakeholders and their values and concerns. Health system leadership raised valid concerns reflecting legitimate organizational values. First, there existed a contractual deadline to complete the clinic on schedule. Demonstrating the commitment and ability to make good on promises is important, not only from a contractual perspective, but also to strengthen the burgeoning relationship with the recently integrated physician group. Additionally, the value of stewardship dictates that the health system not irresponsibly abandon expenses already incurred to develop the clinic at the original site. In good faith, the health system had invested in appraisals, architectural drawings, site preparations and extensive legal and regulatory efforts to initiate demolition and construction. An argument was advanced that the health system had acted responsibly and should not be held responsible for the inability of the city and the grocery chain to make good on their agreement to relocate the store in a nearby location. Then the health system paused to consider other organizational values. As a preliminary step, the impacted physicians were engaged in a dialogue to explain the unexpected delay in constructing a new grocery store and to explore the community’s associated concerns. Community members as well as civic leaders were again engaged to solicit their input on the proposed construction considering the values conflict. Although civic leaders had originally been engaged, greater effort was placed on obtaining input from those most impacted by the potential decision with an emphasis on the professional obligation to include marginalized voices (Tarzian and Wocial 2015). Given the new visibility to the discussion, the media became involved and portrayed the dilemma as a “David vs Goliath” scenario, glossing over the nuances of the value uncertainty and the long-range benefits that might incur to the neighborhood if the clinic were to be built. Despite negative media attention, the health system was able to reengage with civic and community leaders. Taking a communitarian perspective, the health system respectfully dialogued with multiple groups, i.e., neighborhood residents, city leaders, the impacted physicians, believing these perspectives would help clarify viable options for the intersecting communities to which it owed moral duties (Kuczewski 2009).

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After discernment with these multiple groups and considering the significant agreement in opposition by the neighborhood residents, the health system abandoned plans to build on the site of the existing grocery. This decision was met with gratitude from community members and affirmation from the media. The physicians who had been promised the new clinic were also agreeable to this outcome, although it meant the new clinic would not be completed within the agreed contractual period. The physicians appreciated the diligence of the health system in seeking community input and recognized the imprudence both ethically and practically of moving forward in the face of community opposition. Whether this decision has a long term positive financial impact on the community is unclear, but the process of arriving at this decision and giving deference to the values of the community was impactful for the identity of the hospital both for internal and external audiences. An organization’s identity is not captured solely in mission and values statements but in the experiences of those inside and outside the organization. Thus, an organizational identity exists to the extent that people experience and believe in it (Ashforth and Mael 1996). Importantly, it was not simply the decision that was reached or the process that led to the decision which would have lasting impact on the organization. Health system leadership at the recommendation of the clinical ethics consultant recognized that a continued shared dialogue around the process and decision could have an impact on reinforcing organizational identity and shared values throughout St. Gabriel’s and their parent national health system. The clinical ethics consultant reasoned that these experiences in organizational and community discernment could be used to further elucidate, educate and support the identity of the health system as an organization committed to solidarity and subsidiarity with the community and further highlight the important role of the social determinants of health in contributing to population health. Initially, a case-based format was prepared to share with ethics committees throughout St. Gabriel’s parent health system. This case was presented much as in this essay and relevant ethical principles were discussed related to Catholic social teaching, the common good and organizational ethics. This education occurred via webinars with ethics committee chairpersons and ethics resources throughout the health system who then utilized the resources within their ethics committees. Desiring to deepen the impact of the organizational learning beyond ethics committees. St. Gabriel’s parent health system incorporated the case in an education and formation program developed for executives throughout the broader health ministry. These included clinical executives e.g., physician and nurse executives, as well as those leaders supporting the business of healthcare, e.g. finance and human resources executives. This course highlights essential and distinctive elements of Catholic identity including organizational discernment and a commitment to including all stakeholders in decisions which will impact those stakeholders. Through this process the organization’s values become shared rather than merely accepted through a reflexive dialogue among a stakeholder group of executives (Pruzan 2001). St. Gabriel’s experiences in this case reflect the contributions that a skilled ethics

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facilitator can bring to an organization beyond clinical ethics consultation. These include the identification and clarification of value conflicts, the coordination of dialogue among various stakeholders and the implementation of proactive organizational strategies to emphasize organizational identity and values to prevent future conflicts.

References Albert, S., & Whetten, D. A. 1985. Organizational identity. Research in Organizational Behavior, 7, 263–295. American Society for Bioethics and Humanities. 2011. Core Competencies for Healthcare Ethics Consultation. 2nd ed. Chicago: American Society for Bioethics and the Humanities. Ashforth, Blake, and Fred Mael. 1996. Organizational Identity and Strategy as a Context for the Individual. Advances in Strategic Management. 13: 19–64. Boyle, Philip J., Edwin R. DuBose, Stephen J. Ellingson, David E. Guinn, and David B. McCurdy. 2001. Organizational Ethics in Health Care: Principles, Cases, and Practical Solutions. San Francisco: Jossey-Bass. Gottlieb, Laura, Caroline Fichtenberg, Hugh Alderwick, and Nancy Adler. 2019. Social Determinants of Health: What’s a Healthcare System to Do? Journal of Healthcare Management 64: 243–257. Kuczewski, M. 2009. The Common Morality in Communitarian Thought: Reflective Consensus in Public Policy. Theoretical Medicine and Bioethics. 30 (1): 45–54. Langley, Monica. 1998. Money Order: Nuns’ Zeal for Profits Shapes Hospital Chain, Wins Fans. The Wall Street Journal, January 7, 1998. https://www.wsj.com/articles/SB88412525084014 7000. Accessed 13 Jan 2020. McCruden, Patrick. 2013. The Affordable Care Act and Community Benefit: A Mandate Catholic Health Care Can (Partly) Embrace. Kennedy Institute of Ethics Journal 23 (3): 229–248. Pruzan, P. 2001. The Question of Organizational Consciousness: Can Organizations Have Values, Virtues and Visions? Journal of Business Ethics 29: 271–284. Ross, Judith Wison, John W. Glaser, and Dorothy Rasinski-Gregory. 1993. In Health Care Ethics Committees: The Next Generation, ed. Joan McIver Gibson and Corrine Bayley. American Hospital Association. Sabin, James E. 2016. How Can Clinical Ethics Committees Take on Organizational Ethics? Some Practical Suggestions. The Journal of Clinical Ethics 27 (2 (Summer)): 111–116. Tarzian, Anita J., and Lucia D. Wocial. 2015. A Code of Ethics for Health Care Clinical Ethics Consultants: Journey to the Present and implications for the Field. American Journal of Bioethics 15: 38–51. USDA. 2020. Economic Research Service https://www.ers.usda.gov/amber-waves/2011/december/ data-feature-mapping-food-deserts-in-the-us/.

Correction to: Thorny Issues in Clinical Ethics Consultation Katherine Wasson and Mark Kuczewski

Correction to: K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0 In Chapter 3, the name of one of the affiliate schools was inadvertently added as an author name (Dalla Lana). The author group has now been corrected as: Dave Langlois, Juhee Makkar, and Michael J. Szego. The name of the second author from chapter 21 was inadvertently misspelled as Udo Shuklenk. The author’s name has now been corrected as Udo Schuklenk.

The updated original version for the chapters can be found at https://doi.org/10.1007/978-3-030-91916-0_3 https://doi.org/10.1007/978-3-030-91916-0_21 © Springer Nature Switzerland AG 2022 K. Wasson, M. Kuczewski (eds.), Thorny Issues in Clinical Ethics Consultation, Philosophy and Medicine 143, https://doi.org/10.1007/978-3-030-91916-0_30

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