The Basics of Bioethics [4th ed.] 9780429017551, 0429017553

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Metaethics What is the source of ethics?

How do we know what is ethical?

Religious Answers: The Divine Will The Divine Law Secular Answers: Universal Sources: Natural Law (e.g., the Stoics) Hypothetical Contract Relativist Answers: One’s Culture One’s Personal Preferences Actual Social Contract

Religious Answers: Revelation Scriptures Church Tradition Experience Secular Answers: Reason Experience and Observation Intuition Social Agreement or Contract

Normative Ethics Intrinsic Values

Principles of Right Action

Truth Moral goodness Beauty Happiness Health

ConsequenceMaximizing Principles

Duty-based Principles

Virtues Professional Virtues

Secular Virtues

Religious Virtues

Hippocratic:

General:

Jewish:

Percival:

Greek:

Purity Holiness

Individual

Subjective

1. Beneficence 2. Nonmaleficence

Hippocratic Utility Objective

1. Beneficence 2. Nonmaleficence

Respect for Persons:

Autonomy Fidelity Veracity Avoid Killing

Tenderness Steadiness Condescension Authority

WMA (1948): Conscience Dignity

AMA (1957):

Respect for dignity of man Devotion

AMA (1980):

Subjective

Social

1. Beneficence 2. Nonmaleficence

Social Utility Objective

1. Beneficence 2. Nonmaleficence

Justice

Compassion Respect for human dignity

Florence Nightingale Pledge: Purity Faithfulness

Benevolence Care Wisdom Temperance Courage Justice

Japanese: Kindness Devotion

Homeric:

Skill Cunning Courage Self-reliance Loyalty Love of friends Hatred of enemies Courtesy Generosity Hospitality

Gemilut Hasadim (loving kindness) Tzedek (loyalty or obedience)

Christian:

Faith Hope Love (Agape)

Muslim:

Contentedness Gratitude Generosity Magnanimity

Hindu:

Care Attention Humility Constant reflection

Confucian:

Humaneness Compassion Filial piety

Rules and Rights (Codes of Ethics) (How Rigidly Do Rules Apply?) Antinomianism No Rules Apply

Rules of Thumb (Guidelines, Situationism) Rules of Practice Legalism Rules Apply Rigidly

Cases (Casuistry)

“Veatch and Guidry-​Grimes have set a new standard for balancing breadth, clarity, and accessibility for introductory texts in healthcare ethics. They impressively cover a wide range of important topics, and they are judicious and fair in their discussion of the many sides to pressing bioethical debates. This text will serve well undergraduate students in general healthcare ethics courses, as well as anyone looking for an up-​to-​date guide to contemporary debates in bioethics.” Michael J. Deem, Duquesne University “A good bioethics primer will give a concise skim of basic concepts and still manage to show where there is consensus and disagreement and why. It will introduce new frameworks and provide a range of cases from classic to piping hot fresh. It may well have a point of view, but it will not pretend to be the only possible point of view. This is that primer.” Alison Reiheld, Southern Illinois University Edwardsville

ii

THE BASICS OF BIOETHICS

The Basics of Bioethics, Fourth Edition offers an easy-​to-​follow introduction to this dynamic field, intended for healthcare professionals, teachers, students, and anyone interested in bioethics. Accessible and enjoyable for readers of all backgrounds, the book contains numerous cases—​including ones that recently have dominated international headlines—​to help anchor the broader discussion. The text is suitable for use in short courses in schools of medicine, nursing, and other health professions; continuing professional education; various undergraduate departments; and adult education. Chapters are organized around common moral themes in order to help readers understand the values and other connections that tie together different positions in bioethics. This fourth edition adds a new chapter on alternative frameworks in bioethics, including narrative ethics and casuistry, feminist approaches, care ethics, and virtue ethics. Due to significant advances in genetics and reproductive possibilities, this new edition devotes a full chapter to each.The combined teaching, research, and clinical experience of the two authors helps make this edition current with the evolving field of bioethics, while still embedding the major issues in a systematic framework that allows readers easily to navigate the larger field. Key Changes to the Fourth Edition: • An added chapter on new and emerging approaches in bioethics, including those based on virtue ethics, casuistry and narrative ethics, feminist ethics, and care ethics; • Updates throughout the book based on developments in ethical theory and new medical research; • Revisions and updates to the Learning Objectives, Key Terms, Bibliographies, and URLs;

•

The addition of multiple recent case studies, including: • Jahi McMath • an undocumented patient who needs a rule bent • a pediatrician who turns away unvaccinated patients • a minor eligible for pediatric bariatric surgery • a daughter suing a hospital for non-​disclosure of her father’s Huntington’s diagnosis • CRISPR-​edited newborn babies.

Robert M. Veatch is Senior Research Scholar and Professor of Medical Ethics, Emeritus, and former Director at the Kennedy Institute of Ethics, Georgetown University. He is the author, co-​author, or editor of 60 books including Hippocratic, Religious, and Secular Medical Ethics (2012), Case Studies in Biomedical Ethics (with Amy Haddad and Dan English, 2015), Transplantation Ethics (with Lainie F. Ross, 2015), and Defining Death: The Case for Choice (with Lainie F. Ross, 2016). Laura K. Guidry-​Grimes is Assistant Professor in the Department of Medical Humanities and Bioethics with a secondary appointment in Psychiatry at the University of Arkansas for Medical Sciences. She also works as a clinical ethics consultant at the UAMS Hospital and Arkansas Children’s. She co-​edited Moral Expertise:  New Essays from Theoretical and Clinical Bioethics (with Jamie Carlin Watson, 2018).

iv

THE BASICS OF BIOETHICS Fourth Edition

Robert M. Veatch and Laura K. Guidry-​Grimes

Fourth edition published 2020 by Routledge 52 Vanderbilt Avenue, New York, NY 10017 and by Routledge 2 Park Square, Milton Park, Abingdon, Oxon, OX14 4RN Routledge is an imprint of the Taylor & Francis Group, an informa business © 2020 Taylor & Francis The right of Robert M. Veatch and Laura K. Guidry-​Grimes to be identified as authors of this work has been asserted by them in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. First edition published by Pearson Education, Inc. 2000 Third edition published by Pearson Education, Inc. 2012, and Routledge 2016 Library of Congress Cataloging-​in-​Publication Data A catalog record has been requested for this book ISBN: 978-​1-​138-​58007-​7  (hbk) ISBN: 978-​1-​138-​58008-​4  (pbk) ISBN: 978-​0-​429-​50751-​9  (ebk) Typeset in Bembo by Newgen Publishing UK

SELECT TABLE OF CONTENTS

List of Cases  List of Figures  Preface  1 A Map of the Terrain of Ethics 

xviii xx xxii 1

2 The Hippocratic Oath and Its Challengers: A Brief History  18 3 The Basis of Moral Standing in Debates on Defining Death, Abortion, Stem Cells, and Animal Welfare 

37

4 Principle-​based Approaches to Moral Problems in Bioethics  63 5 Alternative Approaches: Virtues, Casuistry and Narrative Ethics, Feminist Approaches, and Care Ethics 

80

6 Problems in Benefiting and Avoiding Harm to the Patient 

108

7 The Ethics of Respect for Persons: Lying, Cheating, and Breaking Promises, and Why Physicians Have Considered Them Ethical 

125

8 The Principle of Avoiding Killing 

152

viii  SELECT TABLE OF CONTENTS

9 Death and Dying for Patients Who Are Not Their Own Decision-​makers 

171

10 Human Control of Life: Genetics and Modifying Human Nature 

193

11 Reproductive Choice and Advancing Technologies: Ethical Challenges in the Creation of Humans 

216

12 Social Ethics of Medicine: Allocating Resources, Health Insurance, Transplantation, and Human Subjects Research 

234

Appendix  Notes  Index 

269 278 286

vi

CONTENTS

List of Cases  List of Figures  Preface 

xviii xx xxii

1 A Map of the Terrain of Ethics 

1  3  3  4  6  7  7  8  9  9   10   11   11   12   14   16   16   16

The Levels of Moral Discourse  The Level of the Case  Rules and Rights (Codes of Ethics)  Normative Ethics  Three Questions of Normative Ethics  Action Theory: What Are the Principles for Right Action?  Value Theory: What Things Are Good or Valuable?  Virtue Theory: What Character Traits Are Good to Have?  Alternative and Newer Normative Approaches 

Metaethics  The Meaning or Source of Ethical Norms  How Do We Know What Is Ethical? 

A Full Theory of Bioethics  Key Concepts  Bibliography  Works on Basic Ethics  Works on Bioethics 

2 The Hippocratic Oath and Its Challengers: A Brief History  18 The Hippocratic Tradition    19

x Contents

The Hippocratic Oath  The Oath of Initiation Section  The Code Section of the Oath 

Modern Codes in the Hippocratic Tradition  Percival’s Code of 1803  The American Medical Association Code of 1847  The World Medical Association Declaration of Geneva, 1948  Other Contemporary Oaths or Codes in the Hippocratic Tradition 

The Collapse of the Hippocratic Tradition  Codes and Oaths Within the Medical Profession Breaking with the Hippocratic Tradition  The Nuremberg Code, 1946  The American Hospital Association Patient Bill of Rights, 1973  American Medical Association Principles of 1980  The World Medical Association Declaration of Geneva Revisions Up to 2017  Other Professional Association Codes 

Alternative Oaths  Sources from Outside Professional Medicine  Judaism, Catholicism, and Protestantism  Hinduism  Buddhism  Ancient Chinese Thought  Islam  Japan  The Oath of the Soviet Physician  Liberal Political Philosophy  The UNESCO Universal Declaration on Bioethics and Human Rights 

Key Concepts  Bibliography 

3 The Basis of Moral Standing in Debates on Defining Death, Abortion, Stem Cells, and Animal Welfare 

  19

  20   21

  22

  22   23   23   24

  25   25

  25   26   27   27   28

  28   28   28   29   29   29   29   30   31   31   31

  33   33

37

Persons, Humans, and Individuals: The Language of Moral Standing    39 The Concept of Moral Standing    39 Moral and Descriptive Uses of the Term Person    40 Persons Defined as “Those Who Possess Certain Properties”  Persons Defined as “Those with Full Moral Standing”  Confusion Resulting from Shifting from a Nonmoral to a Moral Use of the Term Person 

Moral and Nonmoral Uses of the Word Human 

  41   41   42

  43

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Contents  xi

Defining Death  A Somatic or Circulatory Definition of Death 

  44   45

The Problem of Irreversibility  Problems with a Somatic Definition of Death 

  46   48

A Whole-​Brain-​Oriented Definition of Death  The Higher-​Brain Definition of Death  Definitions and Moral Standing  Abortion  Symmetry between Definition of Death and Abortion  Possible Basis for a Breakdown in the Symmetry  Human Stem Cells  Stem Cells and Moral Standing  Stem Cells and Cooperation with Evil  The Moral Status of Nonhuman Animals  Key Concepts  Bibliography  The Definition of Death  Abortion  Stem Cells  Moral Standing of Nonhuman Animals 

  48   50   50   51   51   52   54   54   55   56   57   58   58   59   60   61

4 Principle-​based Approaches to Moral Problems in Bioethics  63 Principle-​based Approaches: Principlism    63 The List of Principles    64 Conflict Among Principles    67 Different Concepts of Duty    68 Absolute, Exceptionless Duties    68 Prima Facie Duties    69 Duty Proper    70 Theories of Conflict Resolution    70 Single-​Principle Theories    70 Ranking (Lexically Ordering) Principles    71 Balancing    72 Combining Ranking and Balancing    72 Translating Principles to Rules    74 Key Concepts    76 Bibliography    79 5 Alternative Approaches: Virtues, Casuistry and Narrative Ethics, Feminist Approaches, and Care Ethics  Virtue-​based Approaches  Virtue Lists 

80   80   82

xii Contents

Professional Virtues  Secular Virtues  Religious Virtues  Care as a Virtue 

  84   84   85   86

Problems with the Virtues 

  86

The Wrong Virtue Problem  The Naked Virtue Problem 

Casuistry and Narrative Ethics  Casuistry  Narrative Ethics  Problems with Casuistry and Narrative Ethics  Feminist Approaches  The Evolution of Feminist Thought  Feminist Approaches and Ethical Theory  Problems with Feminist Approaches  Care Ethics  The Origins of the Ethic of Care  The Meaning of the Care Perspective  Specific Situations Take Priority Over Moral Rules  Among Virtues, Care Should Prevail  In the Debate between Principles of Right Actions and Virtues, Virtues Should Prevail 

Problems with Care Ethics  Key Concepts  Bibliography  Virtues  Casuistry and Narrative Ethics  Feminist Approaches  Care Ethics 

6 Problems in Benefiting and Avoiding Harm to the Patient  Complications in Determining What Benefits Patients  Subjective versus Objective Estimates of Benefit and Harm  Medical versus Other Personal Benefits  Conflicting Goals within the Medical Sphere  Ways to Balance Benefits and Harms  Bentham and Arithmetic Summing  Comparing the Ratio of Benefits to Harms  First of All, Do No Harm 

The Problem of Medical Paternalism  Key Concepts  Bibliography 

  87   87

  88   88   90   91   92   93   94   96   97   98   99

  99   100   100

  101   102   104   104   105   106   106

108   108   109   113   115   115   116   116   118

  119   122   124

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Contents  xiii

7 The Ethics of Respect for Persons: Lying, Cheating, and Breaking Promises, and Why Physicians Have Considered Them Ethical  The Principle of Fidelity and the Duty of Confidentiality  Fidelity and the Notion of Loyalty  The Ethics of Confidentiality  The Hippocratic Approach to Confidentiality  Non-​Hippocratic Approaches to Confidentiality 

The Principle of Autonomy and the Doctrine of Informed Consent  The Concept of Autonomy  Positive and Negative Rights  Informed Consent, Autonomy, and Therapeutic Privilege  Standards of Disclosure for Consent to Be Adequately Informed  The Professional Standard  The Reasonable Person Standard  The Subjective Standard 

The Principle of Veracity: Lying and the Duty to Tell the Truth  The Change in Physician Attitudes  Accounting for the Change in Attitudes  Changes in Judgments about Benefit and Harm  A Possible Shift to an Ethic of Respect for Persons 

The UNESCO Universal Declaration on Bioethics and Human Rights  Key Concepts  Bibliography 

8 The Principle of Avoiding Killing  Active Killing Versus Allowing to Die  Distinguishing Active Killing from Allowing to Die  Invalid Arguments for Keeping the Distinction between Active Killing and Letting Die  Consequentialist Arguments for and against Distinguishing Active Killing and Letting Die  The Argument from Implications for Mentally Incapable Patients  The Argument from a Principle of Avoiding Killing  The Argument from Autonomy 

New Legal Initiatives for Physician-​Assisted Suicide  Distinguishing Homicide on Request from Assistance in Suicide  Initiative Petitions 

Stopping versus Not Starting  The Distinction between Direct and Indirect Killing  The Distinction between Ordinary and Extraordinary Means 

125   127   128   129   129   130   133   133   134   137   140   140   140   141

  142   142   143   143   144

  146   148   149

152   154   155   155   156   157   158   159

  160

  160   161

  162   163   164

xiv Contents

The Meaning of the Terms  The Criteria for Classifying Treatments Morally Expendable  Uselessness  Grave Burden  Proportionality 

The Subjectivity of All Benefit and Harm Assessments  Withholding Food, Fluids, CPR, and Medications  Key Concepts  Bibliography 

9 Death and Dying for Patients Who Are Not Their Own Decision-​makers  Formerly Mentally Capable Patients  The Principle of Autonomy Extended  Substituted Judgment  Going Beyond Advance Directives  Mechanisms for Expressing Wishes  Advance Directives  Legislation 

Issues to Be Addressed in an Advance Directive  What Treatments Are Being Refused?  What Treatments Are Desired  When Should the Directive Take Effect?  Is a Healthcare Power of Attorney to Be Appointed? 

Patients Who Have Never Been Mentally Capable and Who Have No Available Family or Other Pre-​existing Surrogates  The Principles  The Legal and Ethical Standard  Who Should Be the Surrogate?  Patients Who Have Never Been Mentally Capable and Have a Surrogate  Disputes about What Is Best for the Patient  What Is the Standard Underlying This Family Discretion?  Key Concepts  Bibliography 

10 Human Control of Life: Genetics and Modifying Human Nature  Genetics as the Path to Playing God? 

  164   165

  165   165   166

  166   167   168   169

171   173   175   175   176   178   178   180

  181

  181   181   182   182

  183   183   183   184   185   185   187   190   191

193   194

xvi

Contents  xv

The Human Genome Project  The Collection of Genetic Information and Lessons from Henrietta Lacks  Precision Medicine  Genetic Discrimination  Genetic Testing and Counseling  Dilemmas for Counselors  Direct-​to-​Consumer Genetic Testing  Genetic Screening  Genetic Engineering  Therapy versus Enhancement  Somatic versus Reproductive Cell Changes  CRISPR  Key Concepts  Bibliography 

  195   196   198   199   199   202   203   205   206   207   208   209   211   212

11 Reproductive Choice and Advancing Technologies:  Ethical Challenges in the Creation of Humans 

216

Procreative Autonomy: Possibilities and Limits  Abortion and Prenatal Testing  In Vitro Fertilization  Preimplantation Genetic Diagnosis  Surrogacy  Posthumous Reproduction  Creating a Donor Child  Cloning  Key Concepts  Bibliography 

  217   219   221   222   223   226   228   229   230   231

12 Social Ethics of Medicine: Allocating Resources, Health Insurance, Transplantation, and Human Subjects Research  The Need for a Social Ethic for Medicine  The Limits of the Ethics of Individual Relations  The Social Ethical Principles for Medical Ethics  Social Utility  The Nature of the Principle of Social Utility  Quantification Problems  Problems of Inequity  Justice as an Alternative Social Ethical Principle 

234   235   235   236   236   236   237   237   238

xvi Contents

Allocation of Healthcare Resources  The Demand for Healthcare Services  The Inevitability of Rationing  Ethical Responses to the Pressures for Cost Containment  Ethical Principles at the Level of the Individual  The Subjective Form of Hippocratic (Patient-​Benefiting) Utility  The Objective Form of Hippocratic (Patient-​Benefiting) Utility  The Principle of Autonomy  Ethical Principles at the Social Level  Social Utility  Justice 

The Role of the Clinician in Allocation Decisions  Make the Clinician the One Who Decides Where to Cut Costs  Practical Problems in Calculating  Problems in Principle with Abandoning the Patient-​Centered Ethic  An Exemption from Social Ethics for Clinicians 

Health Insurance  The Affordable Care Act of 2010  Ethical Issues 

  239   240   240   242

  242   242   243   243   244   246   247

  247

  247   248   249   249

  250   250   251

The Right to Healthcare  (1) Healthcare and Society’s Interest  (2) Healthcare as a Social Good  (3) Healthcare as a Matter of Justice  Mandatory Coverage  The Multiple Lists Problem 

  251   251   251   252   252   253

Organ Transplantation  Is Performing Transplants “Playing God”?  Procurement of Organs  Organ Allocation 

  254   255   255   257

Social Utility  Justice  Balancing Social Utility and Justice 

Research Involving Human Subjects  Distinguishing Research and Innovative Therapy  Social Ethics for Research Involving Human Subjects  Social Utility  Respect for Persons  Justice 

Conclusion  Key Concepts  Bibliography  Social Ethical Theory 

  258   259   259

  259   260   260   260   261   261

  263   264   265   265

xvi

Contents  xvii

Allocation of Scarce Medical Resources  Health Insurance  Organ Transplantation  Research Involving Human Subjects 

Appendix  Hippocratic Oath  Universal Declaration on Bioethics and Human Rights (2005) 

Notes  Index 

  266   267   267   268

269   269   270   278 286

CASES

Case 1 Jahi McMath and a Confusing Case of Life and Death  1 Case 2 Physician Assistance in a Merciful Homicide  30 Case 3 The Man Living without a Heart  46 Case 4 Infant Heart Transplant  46 Case 5 When a Patient Wants to Stay in the Hospital  64 Case 6 Conflicting Promises: A Physician in a Bind  69 Case 7 Turning Away an Unvaccinated Pediatric Patient  82 Case 8 When a Minor Wants Bariatric Surgery  92 Case 9 When an Undocumented Patient Needs a Rule Bent  97 Case 10 The Physician Who Favors Hysterectomies  109 Case 11 Risks and Benefits in a Randomized Clinical Trial  117 Case 12 Is Birth Control Bad for One’s Health?  121 Case 13 The Promised Internship  128 Case 14 The Case of the Husband with Secret Affairs  131 Case 15 Natanson v. Kline: When May Information Be Withheld?  137 Case 16 Canterbury v. Spence: Invoking Therapeutic Privilege  139 Case 17 Limits on the Physician’s Duty to Promote Health  144 Case 18 Terri Schiavo: The Role of Relatives in Refusing a Feeding Tube  177 Case 19 Chad Green: The Case of Limited Familial Discretion about Chemotherapy  188 Case 20 The Case of Henrietta Lacks  196 Case 21 Non-​Disclosure of Genetic Risk  201 Case 22 Experimenting with Gene Therapy: The Case of Jesse Gelsinger  207 Case 23 A Rogue Scientist and the Emergence of CRISPR Babies  210 Case 24 Mary Beth Whitehead  224

xvi

Cases  xix

Case 25 Creating a Matched Sibling  Case 26 DRG Limits and Myocardial Infarction  Case 27 Allocating Livers: Local versus Regional Priority  Case 28 Justice in Design of Research 

228 241 257 262

FIGURES

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

16 17 18

The Four Levels of Moral Discourse  Rules and Rights  Three Questions of Normative Ethics  Metaethics: The Meaning and Justification of Ethical Judgments  Types of Codifications of Medical Ethics  Two Definitions of Person  Three Definitions of Death  Ethical Principles  Lists of Virtues  Where Hippocratic Utility Fits in a Grid of Types of Ethical Principles  The Spheres of Well-​being  Elements of Medical Well-​being  High-​Risk/​High-​Gain versus Low-​Risk/​Low Gain Therapy Choices  Ethical Principles at the Individual Level  The Principles of Biomedical Ethics: Comparing the UNESCO Universal Declaration on Bioethics and Human Rights and the Principles of This Book  Four Basic Distinctions in Death and Dying  Active Killing versus Forgoing Life Support (Actions versus Omissions)  Invalid Arguments for the Omission/​Commission Distinction 

4 6 7 12 32 41 45 68 83 111 113 115 117 127 147 153 154 155

x

Figures  xxi

19 Types of Mentally Incapable Patients and the Standards Used in Surrogate Decisions  20 Ethical Principles  21 Aggregate Net Benefit as a Function of Days of Stay 

173 236 242

PREFACE

Puzzles and challenges in bioethics continue to expand in the twenty-​first century, and healthcare has witnessed numerous changes since the last edition of this book appeared in 2012. In the United States, we have had several years of experience with the Affordable Care Act, so-​called Obamacare, which has provided health insurance for millions of additional Americans and imposed penalties on those who choose not to have insurance. The manipulation of human genes has become easier with the development of CRISPR (a technology that makes it possible to modify strands of DNA, including those that are heritable, that make up the genetic material of animals and humans). There are reports of the world’s first human infants being born with an intentionally modified heritable genome, with the editing taking place before they were born in an attempt to provide partial resistance to HIV (and the scientist who did this has been disciplined for experimenting without proper approval). Organ transplant has become more and more standard medical practice, and new body parts, including hands, face, and uterus, are now being transplanted. Medical assistance in hastening death has become more and more part of public policy debate. The number of states that permit physician assistance in suicide for terminally ill patients has doubled, and more and more jurisdictions are engaged in serious debate about permitting patients to terminate life with the knowledge and help of their doctors. At the same time, the world of academic and professional bioethics has become increasingly complex and sophisticated. Alternative theories in bioethics have emerged as influential frameworks for bioethicists who have grown tired of analysis based on principles. In this edition for the first time, we address specifically casuistry and narrative ethics, feminist approaches, care ethics, and virtue-​based approaches as ways of constructively thinking about the ethics of healthcare.

xxi

Preface  xxiii

Reproductive medicine and genetics have evolved so rapidly that, for the first time, this new edition devotes a chapter to each. All of these developments are addressed in the fourth edition of The Basics of Bioethics.This volume had its origins in the courses that the lead author taught over the years, first at Columbia University’s College of Physicians and Surgeons,Vassar College, and Brown University, but for the past decades at Georgetown University as well as regular visiting professorships at the St. George’s University School of Medicine in Grenada and Union College Leadership in Medicine Program in New York (now taught in conjunction with Clarkson University’s Department of Bioethics). These chapters started out as the lectures given to upwards of 15,000 medical school and philosophy students. This edition adds the contributions of a co-​author, Laura K. Guidry-​Grimes, who provided the lead for the completely new chapters on alternative theories in bioethics, reproduction, and genetics, as well as many of the extensive conceptual and factual revisions in the other chapters. The co-​author offers the perspective of a clinical ethics consultant and assistant professor in the Department of Medical Humanities and Bioethics at the University of Arkansas for Medical Sciences. The analyses and cases have been tried on countless students and colleagues to whom we are forever grateful. When the first edition of The Basics of Bioethics appeared in the final weeks of the twentieth century, no current, brief survey existed that was a suitable introduction to the field. Textbooks, anthologies, casebooks, and single-​authored perspectives were available to provide perspective on the issues of bioethics, but no introduction to the field of bioethics was available under several hundred pages in length. The first edition served that purpose. It was intended for healthcare professionals and lay people who wanted an introduction to the issues in a relatively small edition, suitable for use in short courses in schools of medicine, nursing, and the other health professions; continuing professional education; undergraduate courses in philosophy, religion, and the social sciences; and in adult education. This new edition continues to be committed to that purpose. It provides a relatively brief introduction to bioethics intended for those who are not specialists in the field. Our goal is to present an understandable, fair, and balanced survey of the major issues embedded in a systematic framework based on the ethical principles and other theoretical tools increasingly available to bioethics. In this edition, the chapter structure has changed somewhat. The book retains the approach of organizing chapters by major themes rather than primarily by standalone topics. For example, abortion, the definition of death, the moral status of nonhuman animals, and stem cells are all grouped together in a single chapter focusing on the overarching theme common to all of these: the moral status or “standing” of humans and other animals. Similarly, all the topics involving more social aspects of bioethics (the allocation of resources, health insurance, organ transplant, and human experimentation) are grouped together in a chapter on the social ethics of medicine. This permits consolidation into a relatively short book while simultaneously revealing the common moral themes among apparently

xxiv Preface

diverse topics. It adds to each chapter new material on developments since the appearance of the third edition.The approach is systematic. Rather than discussing issue-​by-​issue every topic in the current bioethics literature, we begin with an introduction to ethical theory and a brief history of bioethics. The first chapter is designed for the reader who has not been exposed to formal ethical theory. It provides a “map” of the ethical terrain, a schema outlining four levels of moral discourse or ethical analysis. This scheme is summarized in the diagram that appears at the very front of this volume. On this diagram virtually every dispute in bioethics can be mapped. Some disagreements exist at one of the levels. For example, much of bioethics in the late decades of the twentieth century involved controversies over which ethical principles prevailed. This can be seen in the central shaded boxes at the level of “Normative Ethics” in the figure at the front of this book. Other disputes involve questions of whether to resolve moral controversies by working at this normative level or at some other level (by applying a code of ethics or by focusing on an individual case, for instance). Portions of this central diagram of the “Four Levels of Moral Discourse” are reproduced in various chapters when the ethical controversies of bioethics are presented in greater detail.We hope this diagram will make clearer, especially to the reader not trained in ethical analysis, exactly what the basis is for moral disagreements in the field of bioethics. Law has, in a sense, taken over in the practice of medicine. In a way that is too bad. Law is obviously important, but it’s not all there is to medicine. Medicine is a profession, and, traditionally, one of the chief characteristics of a profession is that it has its own ethic. At least until about 50 years ago, self-​regulation was the definitive sign that medicine was a profession; it didn’t engender much controversy. In this volume, we look at the relatively new controversies over self-​ regulation in medicine and some of the ethical problems that emerge. In this and the third edition we are able to include in the Appendix a major development in this movement to a more public bioethics—​the adopting by UNESCO of its Universal Declaration on Bioethics and Human Rights. This places bioethics norms for the first time in the hands of the global public—​patients and the public as well as health professionals. We ask in the second chapter why the old Hippocratic Oath is in trouble and what the alternatives are. In Chapter 3 we discuss what may first seem like a disparate collection of topics: abortion, stem cells, the definition of death, and the welfare of nonhuman animals. We shall see that they all raise the question of who has moral standing and why. Next for this new edition we add two chapters that explore the major theoretical approaches to bioethics. Chapter 4 deals with the approach, often called “principlism,” that dominated bioethics in the last decades of the twentieth century and the first years of the twenty-​first. For this edition, we also incorporate in this chapter the discussion of how to resolve conflict among the principles. Then in a new chapter (Chapter 5) dealing with the major alternative theoretical approaches to bioethics, we cover the virtues as well as other

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Preface  xxv

approaches including casuistry, narrative ethics, feminist approaches, and care ethics.These alternatives to principlism have existed in some form for a while, but they continually gain ground as important theoretical frameworks. In Chapter 6, we discuss the ethics of benefiting patients and protecting them from harm. That may sound like a platitude. It seems like it is obvious that the healthcare professional’s goal must be to benefit his or her patient. However, we shall see that benefiting patients is increasingly controversial morally. There are, in fact, many situations in which physicians decide not to provide benefit, at least if they follow more contemporary ethical thinking, rather than the traditional Hippocratic Oath. Next, in Chapter 7, we deal with the major challenge to the Hippocratic perspective, what is often referred to as the ethics of respect for persons or the ethics of liberal political philosophy. This includes an alternative set of ethical considerations that is now being used in place of the Hippocratic Oath. We will be talking about rights of patients and rights of physicians and other healthcare professionals, particularly in terms of fidelity, autonomy, and veracity, and why these principles are causing big problems for healthcare professionals. Chapters 8 and 9 deal with one of the hottest issues in medical ethics, care at the end of life.Traditional medical ethics of the past hundred years was committed to preserving life, sometimes preserving it at all costs. Life, at least human life, was deemed sacred. We shall see that this notion is enormously complex. Euthanasia has variously been taken as referring to active killing for mercy, the forgoing of medical treatment even though the result is likely to be death, and sometimes simply any good death. In Chapter 8 we will begin to examine these issues by dealing with patients generally classified as competent by the law and mentally capable by clinicians. Then in Chapter  9 we will grapple with what the real complications are today, dealing with legally incompetent patients who are terminally ill and those deemed mentally incapable by their clinicians. We consider the arguments that these patients would be better served if they were not treated so aggressively. It is here that this edition incorporates the now-​infamous case of Terri Schiavo. In Chapters 10 and 11, we step back a bit from the principles of normative bioethics to ask about an underlying basic value commitment that shapes positions taken on just about every issue in bioethics: whether humans are going too far in attempting to remake their own basic nature. Here we will focus on genetics and birth technologies—​genetic screening and engineering as well as in vitro fertilization and surrogate motherhood—​as the areas of medicine that pose this question of fundamental value orientation most dramatically. We at last turn, in Chapter  12, to the issue of bioethics for the twenty-​first century, the social ethics of healthcare including the morality of allocating scarce medical resources as well as other conflicts such as medical research pitting the individual against the interests of society. In this edition we include a discussion of the major ethical issues raised by the Affordable Health Care Act, the new federal health insurance law in the United States.We shall examine the role clinicians have

xxvi Preface

to play as society’s agent, or gatekeeper, allocating a pie that is too small to give everyone all the healthcare he or she needs. These 12 brief chapters will give the reader a general framework by which the full range of ethical issues in healthcare can be addressed. It is not that every topic in contemporary bioethics will have been examined explicitly; that would be impossible in a volume of this size. Rather the goal is to understand the basics of how different approaches to ethics come into play in the biomedical world and why the historical framework of the Hippocratic Oath is increasingly seen as outdated and wrong morally. We will lay out a set of principles that challenge that tradition as well as an increasingly rich set of alternative approaches for addressing the major themes of healthcare ethics of today, such as confidentiality, informed consent, honesty in communication between patient and provider, the care of those nearing the end of life, health insurance, and the allocation of scarce resources. We will have some sense of who has moral standing and why that question is crucial not only for the abortion debate, the use of human embryonic stem cells, and deciding when an individual is dead, but also how animals are treated in research, education, and other spheres of life. We will have some understanding of whether humans’ role is that of co-​creator of a new genetic and reproductive future or is better seen as one of proceeding more humbly with fear and trembling out of fear that we may be playing with Promethean fire when we attempt to play like one of the gods. We will see how various people have resolved conflicts among ethical principles and among different theoretical approaches to bioethics. A large number of people have played a role in developing the four editions of this book. We have tried out many of the ideas and chapters on the scholars of the Kennedy Institute of Ethics, students and faculty at Georgetown University, St. George’s University, Union University, Clarkson University, and the University of Arkansas for Medical Sciences, and other colleagues in the field of bioethics.We continue to acknowledge the help of many people in the production of the earlier editions. We are grateful for the continuing, unfailing dedication of the professional staff of the Kennedy Institute’s Bioethics Research Library and for administrative assistance at the Institute. The new co-​author, Laura K. Guidry-​Grimes, is also enormously grateful for the unfailing support and feedback from Jamie Carlin Watson, who would stay up late to debate bioethics when requested (being married to each other makes this less awkward). She also received invaluable advice on ideas and drafts from Noelle Danylchuk, D. Micah Hester, and Elizabeth Victor. Some of the cases benefited from the input of specialists, including Nancy Berlinger and Ed Wicht. Most of all we are grateful to the thousands of students and clinicians who have pursued these issues with us by demanding clarity and enjoying the debate. Many have told us that these are the real issues that will make the healthcare professions rewarding for them even if they will also make life very difficult. Just as important, others have conveyed that, while they are not planning careers in the health professions, exploring these issues will make them better patients, surrogate decision-​makers, and participants in the public policy

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discussion. If so, that is good. Lay people are always necessarily the primary medical decision-​makers in our society, and they must be not only partners in the healthcare enterprise, but primary in that partnership.  Robert M. Veatch,Washington, DC  Laura K. Guidry-​Grimes, Little Rock, AR

1 A MAP OF THE TERRAIN OF ETHICS

LEARNING OBJECTIVES FOR THIS CHAPTER ( 1) Describe the key concepts of ethics. (2) Identify four basic levels of moral discourse, and explain how they relate to one another. (3) Diagnose potential sources of moral disagreement regarding a complicated case or topic. (4) Compare top-​ down and bottom-​ up approaches to ethical problem-​ solving, and explain common responses to these approaches.

CASE 1 JAHI McMATH AND A CONFUSING CASE OF LIFE AND DEATH On December 9, 2013, at Children’s Hospital, Oakland, CA, 13-​ year-​ old Jahi McMath underwent a surgical procedure for sleep apnea that included removal of her tonsils, adenoids, and soft pallet and other interventions. For reasons that are unclear, she suffered a large blood loss resulting in a heart attack and loss of blood flow to her brain. On December 11 and 12 she was examined by physicians Robert Heidersbach and Robin Shanahan who determined that, based on accepted medical standards, her brain had irreversibly lost all functions. Her heart and other body functions were being maintained on a ventilator. She was dead by neurological criteria according to California law. Normally, at this point, death would be pronounced, and supporting medical interventions would cease.

2  A Map of the Terrain of Ethics

Jahi’s mother, Latasha Winkfield, held a different view, citing what she claimed was her firm Christian belief that as long as the heart was beating, her daughter was alive. Moreover, she believed that all treatment, care, and nutrition to a body that is living were required, including treating it with respect and seeking to encourage its healing. She also claimed that she was aware of patients who had been declared brain dead and emerged to regain their cognitive ability and even fully recover. The hospital and its doctors informed Mrs. Winkfield that, according to California law, Jahi was dead without possibility of recovery and that they intended to disconnect the ventilator. After Mrs. Winkfield sought an injunction requiring that the ventilator support continue, the parties agreed to an examination by Dr.  Paul Fisher, the Chief of Child Neurology at Stanford University School of Medicine, who concluded that she was brain dead according to accepted medical standards. The court then denied Mrs. Winkfield’s petition for the medical treatment to continue in the hospital. After further discussion, the parties agreed that, after Jahi was pronounced dead, her body would continue to be ventilated, would be released to the Alameda County Coroner, and removed from the hospital. The coroner then released the body—​still being ventilated—​to her mother. With the public protests outside the hospital and media coverage, Jahi’s family was able to receive substantial financial contributions through the website GoFundMe from people in the public who believed that Jahi was still alive and deserved further life-​sustaining therapies at another hospital. In the news and across social media, concerns were expressed that the family was being treated unfairly due to their race, religious convictions, or both. Eventually, Jahi was transferred to the state of New Jersey where her body continued to receive medical support. Some confusion has remained years later about the status of Jahi in New Jersey. The law there stipulates that the irreversible loss of all functions of the brain constitutes death, but an exception is made when the patient provides a statement holding, based on religious belief, that death does not occur until there is irreversible loss of heart function. The law, however, does not explicitly permit parents to make such a claim on behalf of a minor. Nevertheless, most people assume that, while in New Jersey, Jahi was considered still alive because of this unique provision. Her treatment was paid for at least in part by Medicaid, and since Medicaid only pays for living patients, this implies she was considered still living. On the other hand, no publicly documented pronouncement was made that the California death certificate was negated. In the years since Jahi was declared dead in California, there has been endless dispute about whether Jahi met the criteria for death based on brain function loss when she was pronounced dead and whether she continued to meet those criteria in the years her body was ventilated.

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A Map of the Terrain of Ethics  3

Since then, distinguished experts representing the family have claimed that, at some point, she stopped meeting criteria for those tests.1 The attorney for Mrs. Winkfield has released video purportedly showing that Jahi on occasion responded to her commands to move her hand and foot. On the other hand, those defending the claim that Jahi continues to have no brain function (and therefore could not respond to commands) claim that spontaneous muscle movements can cause such a response. Some have questioned whether the standard accepted brain function tests adequately measure the loss of all functions of the entire brain. Physicians representing Mrs. Winkfield claimed that Jahi had, after death was pronounced, undergone puberty, which, they claim, is evidence that some hypothalamic brain function remained. Tests for hypothalamic function have never been part of the standard testing for brain death. We are left with many critical questions. Did she meet the accepted medical criteria for death based on brain function loss in December of 2013 and, if she did meet those criteria at that time, did she ever regain any brain functions? Is there value in permanently unconscious human life? How much authority should physicians have over parents’ objections in a case like Jahi’s? Is New Jersey right to allow dissent from the legal definition of death based on brain function loss? Should a family be able to opt for a religiously based minority view of what it means to be dead? If so, should Medicaid or other public funds be used to pay for the medical care needed to sustain the body? Jahi McMath suffered a cardiac arrest secondary to liver failure on June 22, 2018. For her family and the public at large, her case continues to provoke a number of critical questions at the heart of medicine and ethics.2

The physicians, Jahi’s mother, and everyone else involved in this case face some difficult and controversial ethical choices.They need to determine the proper definition of death, the role of parents and other surrogates in deciding about medical care for a minor, the proper ethics of terminal care, the morality of using scarce medical resources, and the role that minority religious perspectives ought to play in modern, secular medical care. In order to sort out these disparate and complex ethical issues we need a map of the ethical terrain: an overview of the kinds of ethical issues at stake and the terminology for labeling the disputes. This chapter will provide a basic map of that terrain. Once that overview is in place, we can begin sorting out the issues facing Jahi McMath’s parents and physicians.

The Levels of Moral Discourse The Level of the Case Often in bioethics, the discussion begins with a case problem. Someone faces a concrete moral dilemma or two people disagree about what in a specific situation

4  A Map of the Terrain of Ethics

is the morally appropriate response. Some people may mistakenly think that ethical choices do not occur all that often in medicine. They think that an “ethics case” is an unusual, special event. In fact, ethical and other value choices occur constantly, but, fortunately, in almost all situations the ethically correct course is obvious. The decision can be made with little or no conscious thought. Ethical choices have still been made—​even if the decision-​maker does not even realize it. He or she can rely on well-​ingrained moral beliefs and get by quite adequately. Occasionally, however, the choice does not come as easily. As in the case of Jahi McMath, the choice requires more careful, conscious thought.The physician faced with a choice may turn to colleagues or to a hospital ethics committee for advice. A lay person may turn to friends or to a trusted religious or secular group for guidance. One kind of advice may come in the form of mentioning other cases that seem similar, cases that have been resolved in the past. They may be in the form of a Biblical story or a legal case about which the culture has reached agreement.These agreed-​upon cases are sometimes referred to as “paradigm cases.” Most people can agree that, in matters of ethics, similar cases should be treated similarly. In fact, one of the identifying characteristics of an ethical judgment (as opposed to a matter of mere taste or preference) is this awareness that if the relevant features are similar, then cases should be treated alike. As long as people can agree on what should be done in the paradigm case and can agree that the new case is similar in all relevant respects, they will be able to resolve their problem. This approach relying on paradigm cases is sometimes called casuistry. As seen in Figure 1, this is the lowest or most specific level of what can be considered the four major levels of moral discourse. This figure is a simplified version of the more elaborate map of the ethical terrain that appears at the front of this book.

Rules and Rights (Codes of Ethics) But what if the basic ethics we learned as children does not settle the problem? What if we cannot agree on a paradigm case or cannot agree that our present

Metaethics Normative Ethics Rules and Rights (Codes of Ethics) Cases (Casuistry) FIGURE 1  The

Four Levels of Moral Discourse

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A Map of the Terrain of Ethics  5

problem is like the paradigm case in all relevant respects? We may, at that point, move to a second level of moral discourse, the level of moral rules and rights. Sometimes rules and rights tell us what is legal, but they may also describe what is ethical. Since not everything that is legal is also ethical (and not everything that is illegal is necessarily unethical), it will be important to note the difference. If a rule or a right is considered ethical, it will be seen as grounded in a moral system, an ultimate system of beliefs and norms about the rightness or wrongness of human conduct and character. Groups of rules or rights claims are sometimes called codes of ethics. Jahi McMath’s physicians may consult the Code of Ethics of the American Medical Association to see whether that group considers it ethical to stop treatment in such cases. His parents might consult an Islamic code. Some of the parties in the dispute may bring out the Hippocratic Oath or a “patients’ bill of rights.” Sometimes the parties to an ethical dispute may cite a rule-​ like maxim. “Always get consent before non-​emergent surgery” or “a patient’s medical information must be kept confidential” are examples of such maxims. These rule-​like statements are usually quite specific. A large number of them would be needed to cover all medical ethical situations. If there is agreement on the rule that applies, then the case problem might be resolved at this second level. Sometimes these maxims are stated not as rules but as rights claims. The statement, “a patient has a right to consent before non-​emergent surgery” would be an example. So would the statement “a patient has a right to have his or her medical information kept confidential.” Rules are expressed from the perspective of the one who has a duty to act; rights are claims from the vantage point of the one acted upon. Often rules and rights express the same moral duty from two different perspectives. “Always get consent before non-​emergent surgery” expresses from the health provider’s point of view the same moral notion that is expressed from the patient’s vantage point as “a patient has a right to consent before non-​emergent surgery.”They are then said to be “reciprocal.” If one person has a duty to act in a certain way toward another, that other person usually can be said to have a right to be acted upon in that way. Medical professional, religious, cultural, and political organizations sometimes gather together collections of rules or rights claims. When they do, they “codify” them or produce a code of ethics. They can also take the form of oaths as in the Hippocratic Oath or directives as in the “Ethical and Religious Directives for Catholic Health Facilities.” When the statements are made up of rights claims, they are often called bills of rights as in the American Hospital Association’s “Patient’s Bill of Rights” or declarations as in the UNESCO “Universal Declaration on Bioethics and Human Rights.” Chapter 2 looks at various oaths, codes, and declarations and their implications for cases like Jahi McMath’s. We will discover how controversial these codifications are. Proponents of such codes not only have to determine what rules and rights are appropriate, but also which humans (and nonhumans) have the moral standing to have claims based on these rules and rights.

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Rules and Rights (Codes of Ethics) (How Rigidly Do Rules Apply?) Rules of Thumb (Guidelines, Situationism)

Antinomianism No Rules Apply FIGURE 2   Rules

Rules of Practice

Legalism

Rules Apply Rigidly

and Rights

Chapter  3 takes up this question of who has this moral standing. Here we address the question of whether Jahi McMath has the moral standing of a living human being or is already dead—​according to a brain-​oriented definition of death. We will also see the implications for the moral status of embryos, fetuses, and nonhuman animals. We will at this point also confront the new controversy over the use of stem cells. These rules and rights claims may provide enough moral guidance that the problem being disputed can be resolved. They rest, however, on the authority of the groups creating the codes (or on the inherent wisdom of the maxims themselves). One of the controversies in ethics is how seriously these rules and rights must be taken. At one extreme an ethical theory could include the view that there are no exceptions to the rules or rights. This view, which almost no one actually holds, is sometimes called legalism. At the other extreme, someone might hold that every case is so unique that no rules or rights can ever be relevant in deciding what one ought to do in a specific situation. This view, which is as implausible as legalism, is called antinomianism.Two intermediate positions are more plausible. Situationism holds that moral rules are merely “guidelines” or “rules of thumb” that must be evaluated in each situation. The rules of practice view holds that rules specify practices that are morally obligatory. In this view, the rules are stringently binding on conduct. Exceptions are made only in very extraordinary circumstances—​much less easily than in the situationist position. The continuum is represented in Figure 2 and in the more complete map of the ethical terrain at the front of the book.

Normative Ethics People in an ethics dispute may not be able to determine which rule or rights claim applies or how it should be applied. If the citing of various rules or rights claims cannot resolve the matter at controversy, a more complete ethical analysis may be called for.The parties may have to move to a third level of moral discourse, what can be called the level of normative ethics. It is at this level that the broad, basic norms of behavior, character, and moral relations are discussed. It is from

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A Map of the Terrain of Ethics  7

these basic norms that rules and rights claims will be derived or defended. It is also at this level that the norms of good moral character and moral relations are articulated. The key feature of these norms is that they are general: They apply to a wide range of conduct and character. If “always get consent before non-​ emergent surgery” is a moral rule, it might be associated with some broader ethical norm, such as respect for autonomy. Since these norms (like autonomy) are very broad, only a few norms will be expected or needed in a “normative ethical theory.”

Three Questions of Normative Ethics Normative ethical theory thus refers to very broad approaches that have been used in organizing ethical analysis. These will be explored in Chapters 4 and 5. These include action theory, often expressed in a list of principles of right action; virtue theory, which focuses on the moral character of actors; and value theory, which identifies those things considered intrinsically valuable. These chapters will also include some newer approaches such as narrative theory, care theory, and feminist theory. Action Theory: What Are the Principles for Right Action? As illustrated in Figure  3, normative ethics involves at least three kinds of questions. An ethical theory at the normative level, therefore, must address three separate issues. Much of recent bioethics3 has dealt with the principles of morally right action. The focus is on the action itself, not on the character or motives of the actor. The central normative ethical question has been “what principles make actions morally right?” The answer involves some list of moral principles such as beneficence, nonmaleficence, respect for autonomy, or justice. These are proposals for characteristics of actions that make them morally right. Someone might claim, for example, that doing good (beneficence) or respecting autonomy will tend to make an action (or perhaps a set of actions) morally right. The principles of right action were almost the entire focus of

Normative Theory

Action Theory What are the principles for right action?

FIGURE 3  Three

Value Theory

Virtue Theory

What things are good or valuable?

What character traits are good to have?

Questions of Normative Ethics

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bioethics in the 1970s and 1980s and remain a dominant part of the discussion. They will be considered in more detail in Chapter 6, when we take up the principles that concentrate on producing the best possible consequences, and in Chapters  7–​9, when we consider some additional principles that do not deal with maximizing good outcomes. The figures in these chapters (and at the front of this book) expand the map of the terrain of ethics by providing charts of possible consequence-​maximizing principles and of ones that attempt to identify certain moral duties that are independent of producing good consequences. If a bioethic includes more than one ethical principle, the action theory portion of normative ethics will have to address the question of how to resolve the conflicts that arise among them. There are several different possibilities for resolving these conflicts. They will be explored in Chapter 4. Value Theory: What Things Are Good or Valuable? Since beneficence (or producing good consequences) is one possible principle of right action and nonmaleficence (or avoiding producing bad consequences) is another, a second question that has to be addressed in a full normative theory is, “What things are good or valuable?” There are a number of related questions, including:  “What does it mean for something to have value, such that it is worth protecting or maximizing?” “Is value absolute or contingent? Is it subjective or objective?” “Is there something of fundamental value, or do some values necessarily have more weight than other values?” This branch of normative theory is therefore called value theory. Some of the questions of value theory are taken up in Chapter  4, where the principles of beneficence and nonmaleficence are discussed. The map of the options for this part of normative theory is expanded in that chapter in Figure 9. Just as there are disputes about what the proper list of principles is, so there are disputes about what kinds of things are valuable. Some kinds of things, like money, seem to be valuable, but only extrinsically—​ because it will buy something else of value. Other kinds of things are valuable in themselves –​that is, intrinsically valuable. The real question here is, “What kinds of things are intrinsically valuable?” Among the standard answers are happiness, beauty, knowledge, and—​importantly for bioethics—​health. Although there are many types of value in the world (such as market value, practical value, aesthetic value), just as there are many types of norms that could govern an action or activity (such as norms in chess or at a dinner table), not all of these will be moral or ethical in nature. In discussions about biomedical science or healthcare, it is often critical to delineate moral and nonmoral values and then what is and is not intrinsically valuable. Some people also consider morally good character to be among those things that are intrinsically valuable. This raises the question of just which character traits or virtues are morally good.

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A Map of the Terrain of Ethics  9

Virtue Theory: What Character Traits Are Good to Have? That brings us to the third question of normative ethics: “What character traits are good to have?” or “What kinds of character traits are morally praiseworthy?” A  morally praiseworthy character trait—​such as compassion or benevolence or faithfulness—​is called a virtue and, hence, this part of normative ethics is referred to as virtue theory. For a fuller list of the virtues and a discussion of their role in bioethics, see the discussion of virtue theory in Chapter 5. The virtues refer not to the character of actions, but to the character of the people who engage in the actions. Someone’s character is comprised of enduring dispositions, including cognitive and emotional traits. Benevolence and beneficence should be contrasted. Benevolence is a virtue, the virtue of willing to do good. Beneficence is a principle of actions, the principle of actually acting in such a way that good consequences result. One can, of course, will the good (show the virtue of benevolence) but end up not doing the good (being beneficent). One can also be malevolent, but nevertheless beneficent. (This person would not be of good will, but would nevertheless act in such a way that good results are produced, perhaps because the malevolent one has calculated that producing these good consequences would deflect from past misdeeds.) This means that normative ethics involves questions of ethical principle (action theory), what is good (value theory), and good character (virtue theory). Depending on the question asked and the situation, one may be more interested in one of these questions than another. In the 1970s and 1980s, for example, most bioethics concentrated on the principles of right action.Theorists of the time wanted to get straight on whether an action by a physician was morally right if it was designed to produce good consequences, but simultaneously violated respect for autonomy or involved telling a lie. Most bioethicists of that time did not primarily care about the character of the physician; the issue was what made his or her external conduct morally right, not whether the physician had a virtuous disposition. Ethicists who attacked the mainstream medical paternalism of the day in the name of the principle of autonomy were concerned that the benevolently paternalistic physician was acting immorally by violating the principle of autonomy even if his heart was in the right place. Only in the late 1980s did bioethics return to the more traditional interest in the virtuous character of the health provider. Since then, there has been more of a balance between ethics concerned about actions and ethics concerned about the character of the actors. Since action theory and virtue theory ask different questions, it is normally a mistake to think of the two as being in conflict. They are simply different aspects of the general considerations of morality.

Alternative and Newer Normative Approaches Some additional approaches have emerged in more recent discussions of normative ethics. These typically incorporate elements of action theory, value

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theory, and virtue theory, sometimes in quite unique ways. These newer approaches include narrative theory, which focuses on how the practice of telling, receiving, and reconstructing stories leads to distinctive ethical insights that are not predetermined by principles; care theory, particularly prominent in nursing ethics, which focuses on how care does and should shape moral relationships and institutional arrangements; and feminist theory, which challenges traditional moral reasoning for its masculine lens, instead emphasizing the moral perspectives of women and other historically oppressed persons. By way of contrast, a principle-​based approach holds that it is necessary to focus on a few basic, abstract principles because we can’t know what is morally salient and how to navigate ethically fraught situations if we don’t have principles already in hand. The other approaches (including narrative, care, and feminist theory) instead demand an acute sensitivity to how the particulars of a situation (including relationships and emotions) can make all the difference for how to conceive of the ethical issues at hand. Feminist theory, as we shall see, also is characterized by the kinds of substantive moral issues it emphasizes, issues such as false concepts or dichotomies in medicine, antiquated notions of sex essentialism, and how common assumptions in biomedical science have been based in the male experience and even male anatomy. Virtue theory and these newer approaches will be explored in Chapter 5.

10

Metaethics Sometimes if people can get clear on which principles, virtues, or intrinsic values are at stake, they can then resolve lower-​level moral disputes.They might agree on the principle of autonomy or beneficence being dominant, for example, and then be able to settle disputes about which moral rules or rights are legitimate. In the more interesting and complicated cases, however, the disagreement may remain intractable.The parties to a dispute may not be able to determine which principles should prevail. One person, for example, might give priority to the principle of beneficence while another might believe that autonomy should take precedence (even if respecting autonomy will lead to less good consequences; that is, be less beneficent). Or they may not agree on whether right action or virtuous character is more important. When disputes of this sort linger, the discourse must move to a fourth and final level, the level of metaethics. Metaethics deals with the most basic questions of ethics:  the meaning and justification of ethical terms, how people know which principles or virtues or moral relations are the correct ones, and the ultimate grounding of ethics. Here we are no longer interested in the substantive questions of which actions are morally right or which traits of character are morally praiseworthy. Rather we are dealing with even more basic issues of where to look to get answers to these questions and how we can know when we have the right answer.

A Map of the Terrain of Ethics  11

The Meaning or Source of Ethical Norms Religious ethics has, by now, fairly standard answers to these metaethical questions. To the religious person, claiming an action is right means it would be approved by the deity or is in accord with laws created by the deity. On this view, to say that a character trait is virtuous is to say that it would be approved morally by God. Religious people also have well-​worked-​out notions of how humans can know something is ethical:  by revelation and reason, by reading the scriptures, and by religious authorities such as the pope, church councils, Islamic fatwas, or Talmudic law. More mystical religious people may rely more on direct spiritual revelation. Secular people are not satisfied with these positions, but have analogous answers of their own. The grounding of ethics may be in natural law or practical reason or in some contract (actual or hypothetical) among people.Traditional secular ethics have shared with monotheistic religions the notion that ethics is universal; that is, for a specific moral case at a specific time and place, all people ought to reach the same ethical judgment about whether the behavior involved is morally right or wrong.This view is sometimes called universalism. Of course, universalists recognize that not all people actually will agree on such judgments, but they believe that there is some universal standard (such as the divine will or reason or social contract) against which people’s judgments can be tested. If two people disagree, say, about whether a particular abortion in a particular set of circumstances is immoral, then at least one of them must be mistaken. Other secular theories share with polytheistic religion the notion that there is more than one standard of reference for moral matters. These metaethical positions are called relativist because they hold that moral judgments are relative to the multiple standards or authorities that exist. For example, for believers in polytheistic religion, different cultures may have different deities. One culture’s god might approve of a merciful killing of a suffering patient while another culture’s, considering exactly the same case, might disapprove. Likewise, a secular ethic might be relativist if it holds that the ultimate standard of reference for moral judgments was the norms agreed upon in a particular culture. These alternative answers to the question of the source of ethical judgments are summarized in Figure 4 and in the chart at the front of the book.

How Do We Know What Is Ethical? Metaethics also deals with a related question of how we can know the content of these moral norms. While for religious ethics the divine will or divine law is known through revelation or reason, scripture, or church tradition, in secular ethical systems it is known through reason or through empirical experience. The German philosopher Immanuel Kant based knowledge of ethics in reason; the British empiricist David Hume based it in the experience of sympathy. These

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Metaethics

What Is the Source of Ethics? Religious Answers: The Divine Will The Divine Law Secular Answers: Universal Sources: Natural Law (e.g., The Stoics) Hypothetical Contract Relativist Answers: One’s Culture One’s Personal Preferences Actual Social Contract

FIGURE 4   Metaethics: The

How Do We Know What Is Ethical? Religious Answers: Revelation Scriptures Church Tradition Experience

Secular Answers: Reason Experience and Observation Intuition Social Agreement or Contract

Meaning and Justification of Ethical Judgments

religious and secular answers to the question of how we can know what is ethical are also included in Figure 4 and at the front of the book. These metaethical questions take us well beyond what bioethics normally addresses. Fortunately, many have found that even if there is serious disagreement at this most abstract level, those who cannot agree on matters of religion and secular philosophy can nevertheless reach some converging consensus at the lower three levels of moral discourse.They can agree on normative ethical matters of moral principles, virtue theory, and intrinsic values (value theory). They can agree on many moral rules and rights.Therefore, they can sometimes agree on what is morally right in a particular case, even if they have no agreement in metaethical matters. This is sometimes referred to as a common morality, an agreement on many, indeed most, ethical matters across cultures, religions, politics, and time periods.

A Full Theory of Bioethics Even though we need not spend much time in bioethics going all the way up the “ladder” of the levels of moral discourse, a full theory would need to climb all the way to this top level. In fact, some people would claim that traveling up this ladder from the case through moral rules and rights to normative theory and finally to matters of metaethics is traveling the wrong way.They hold that, in matters of ethics, one must start at the top and work one’s way down. One would then first

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A Map of the Terrain of Ethics  13

get clear on the meaning and justification of ethical claims—​on metaethics—​ and then identify principles of right action, traits of good character, and intrinsic values at the normative level, which would, in turn, lead to identifying lists of moral rules and rights, which would finally tell us how to act and what character traits one should have in particular cases.They claim one should reason from top to bottom rather than from case to the more abstract levels. While the theorists defending the top-​down approach fought bitterly with the bottom-​up clinicians for the last decades of the twentieth century, there is now something of a rapprochement. More and more there is agreement that what is critical is that, for a full and consistent approach to bioethics, eventually all four of these levels must be brought into “equilibrium.” It seems less and less important where one starts. If one begins with a case intuition and discovers that that intuition cannot be brought in line with firmly held beliefs about moral rules and moral principles, then something must give. Either one adjusts the case intuition or, if the case judgment is firm and unrelenting, then maybe the commitments at the higher levels will have to be adjusted. One will move up and down the ladder of the levels of moral discourse. Hence, in Figure 1, the arrows moving from one level of discourse to another are shown pointing in both directions. If one wants a full and consistent set of positions in bioethics, eventually a stable equilibrium is needed. The result is now often called a reflective equilibrium. Chapters 11 and 12 illustrate how questions at all four levels of moral discourse can be brought together to develop a set of judgments that rests in an equilibrium. In these chapters we examine the current controversies over genetics and new birth technologies. In these debates we are witnessing the tensions during the process of the emergence of a stable or equilibrium state in the moral debate. In the case of Jahi McMath, the patient who suffered major brain trauma post-​surgery, it appears that the physicians and the parents are not yet in such a stable state. If they were to start going up the ladder of the levels of moral discourse, they might turn to various codifications of moral rules and rights. Some of their options are presented in Chapter 2. The serious issue of whether Jahi should be treated as a seriously ill but still living patient or as one who has already died will be taken up in Chapter  3. Then in Chapters  4 and 5 we will step back and see how different theories of bioethics, focusing first in Chapter 4 on principle-​based approaches and then, in Chapter 5, on alternative approaches: virtue ethics, ­casuistry and narrative ethics, care ethics, and feminist approaches. Next in Chapter  6 we explore what would be required focusing only on the moral principles of doing what is good for Jahi (beneficence) and avoiding what is harmful (nonmaleficence). In Chapter 7 we introduce considerations that go beyond doing good and avoiding harm, considerations about keeping commitments, respecting autonomy, and speaking truthfully. Since the crucial issues of the care of the dying patient are so critical in bioethics, we devote two chapters to this problem. Chapter  8 sorts out whether, assuming a patient like Jahi is still alive, it would be killing her to turn off the ventilator/​to let her

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die and, if so, whether that is intrinsically an immoral act. Chapter 9 adds the complexity of the fact that Jahi is a minor who, even when she was conscious, was not mature enough to make these decisions on her own. It examines the role of parents and other surrogates in making medical decisions when those surrogates may not reach the most obvious moral choices. In Chapters 10 and 11 we take up questions that are only tangentially raised by Jahi’s case—​controlling life through genetics, birth technologies, and other new strategies for modifying human nature. Since the continuation of medical support for Jahi would consume a large quantity of scarce medical resources, we need also to take up the social ethical question involving the interests of third parties, which we do in Chapter 12.

Key Concepts Action Theory The branch of normative ethics pertaining to the principles of morally right behavior (as opposed to virtuous character); cf.Virtue Theory,Value Theory. Antinomianism The position that ethical action is determined independent of law or rules; cf. Situationism, Rules of Practice, Legalism. Care Theory A  type of normative theory (seen often in nursing ethics) that focuses on how care does and should shape relationships and institutional arrangements; can be a type of virtue theory if the emphasis is on care as a virtue or, if care is considered a cluster of virtues, then on the caring virtues like compassion and empathy. Casuistry The approach to ethics that addresses case problems by applying paradigm or settled cases in order to identify morally relevant similar and dissimilar features. Contract Theory A type of metaethics that maintains that the source of moral rightness or the way of knowing what is moral stems from actual or hypothetical social agreement. Extrinsic Value Something valued for its ability to produce something else that is intrinsically valued. Money and power are often cited as examples; cf. Value Theory, Intrinsic Value. Feminist Theory A  type of normative theory that critiques traditional moral reasoning for its masculine lens and instead emphasizes concepts, ways of knowing, and moral issues from the perspective of women and other historically marginalized groups; feminist theory can guide other normative approaches, such as principle-​ based and virtue-​based approaches.

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A Map of the Terrain of Ethics  15

Intrinsic Value Something valued for its own sake, not merely as a means to some end. Truth, beauty, happiness, health, and virtuous character are all examples of things valued intrinsically; cf.Value Theory, Extrinsic Value. Legalism The position that ethical action consists in strict conformity to law or rules; cf. Antinomianism, Rules of Practice, Situationism. Metaethics The branch of ethics having to do with the meaning and justification of ethical terms and norms; cf. Normative Ethics. Moral Principles General and abstract characteristics of morally right action. The main elements of the part of normative ethics called action theory; cf. Action Theory, Moral Rules. Moral Rules Concrete statements specifying patterns of morally right conduct, sometimes believed to be derived from more abstract moral principles or, alternatively, created as summaries of patterns of individual case judgments. Narrative Theory A type of normative theory that methodologically focuses on receiving, telling, and reconstructing stories, such as those of patients and caregivers; narrative theory is meant to reveal fine-​g rained and textured details of unfolding stories and may emphasize the cultivation of virtue within narratives. Norm A set of rules that governs actions or activities by indicating what is and is not acceptable; may be moral or nonmoral in nature; cf. Normative Ethics. Normative Ethics The branch of ethics having to do with standards of right or wrong; cf. Metaethics. Relativism In metaethics, the position that there are multiple sources or groundings of moral judgments such as the approval of various cultures to which any correct moral judgment must conform; cf. Universalism, Situationism. Rights Justified moral or legal claims to entitlements or liberties often seen as taking precedence over (“trumping”) considerations of consequences. Rights normally stand in a reciprocal relation with moral or legal rules; that is, if someone has a rights claim against some other party, that other party is duty-​bound by a rule requiring that the right be respected. Rules of Practice The position that rules govern practices such that actions are normally judged by rules; cf. Antinomianism, Situationism, Legalism. Situationism The position that ethical action must be judged in each situation guided by, but not directly determined by, rules; cf. Antinomianism, Rules of Practice, Legalism.

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Universalism The position in metaethics that there is a single source or grounding of moral judgments such as the divine will or reason to which any correct moral judgment must conform; cf. Relativism. Value Theory The portion of normative ethics having to do with identifying what things are considered to be good, in what sense they are good, and how good they are; cf. Intrinsic Value, Extrinsic Value, Metaethics, Normative Ethics. Virtue Theory The portion of normative ethics having to do with virtues; that is, persistent dispositions or traits of good character in persons.

Bibliography Works on Basic Ethics Beauchamp, Tom L. Philosophical Ethics:  An Introduction to Moral Philosophy, 3rd ed. New York: McGraw-​Hill,  2000. Copp, David. The Oxford Handbook of Ethical Theory. New  York:  Oxford University Press, 2007. Frankena, William. Ethics, 2nd ed. Englewood Cliffs, NJ: Prentice-​Hall, 1973. Gert, Bernard. Morality: Its Nature and Justification. New York: Oxford University Press, 2005. Held,Virginia, ed. The Ethics of Care: Personal, Political, Global. New York: Oxford University Press, 2006. Lindemann, Hilde. An Invitation to Feminist Ethics. Boston, MA: McGraw-​Hill, 2005. McNaughton, David. Moral Vision: An Introduction to Ethics. Malden, MA: Blackwell, 1988. Rachels, James, and Stuart Rachels. The Elements of Moral Philosophy. New  York: McGraw-​Hill,  2006. Shafer-​Landau, Russ, ed. Ethical Theory: An Anthology. Malden, MA: Blackwell, 2007. Sterba, James P., ed. Ethics:  Classical Western Texts in Feminist and Multicultural Perspectives. New York: Oxford University Press, 2000. Thiroux, Jacques P., and Keith W. Krasemann. Ethics: Theory and Practice, 10th ed. Upper Saddle River, NJ: Prentice-Hall, 2009. Tong, Rosemarie, and Nancy Williams. “Feminist Ethics.” In The Stanford Encyclopedia of Philosophy, 2001. https://​plato.stanford.edu/​entries/​feminism-​ethics, accessed August 18, 2019.

Works on Bioethics Baker, Robert B., and Laurence B. McCullough. The Cambridge World History of Medical Ethics. Cambridge: Cambridge University Press, 2009. Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics, 7th ed. New York: Oxford University Press, 2013. Beauchamp,Tom L., LeRoy Walters, Jeffrey P. Kahn, and Anna C. Mastroianni. Contemporary Issues in Bioethics, 7th ed. Belmont, CA: Thompson Wadsworth, 2008. Brody, Howard. Stories of Sickness, 2nd ed. New York: Oxford University Press, 2003. Charon, Rita, and Martha Montello, eds. Stories Matter:  The Role of Narrative in Medical Ethics. New York: Routledge, 2002.

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Fry, Sara T. “The Role of Caring in a Theory of Nursing Ethics.” Hypatia 4, No. 2 (1989): 88–​103. Garrett,Thomas M., Harold W. Baillie, and Rosellen M. Garrett. Health Care Ethics: Principles and Problems, 5th ed. Upper Saddle River, NJ: Prentice-​Hall, Inc., 2009. Glannon, Walter. Biomedical Ethics. New York: Oxford University Press, 2005. Gert, Bernard, Charles M. Culver, and K. Danner Clouser. Bioethics: A Systematic Approach. New York: Oxford University Press, 2006. Jonsen, Albert R. The Birth of Bioethics. New York: Oxford University Press, 1998. Little, Margaret O. “Why a Feminist Bioethics?” Journal of the Kennedy Institute of Ethics 6, No. 1 (1996): 1–​18. Little, Margaret O., and Robert M. Veatch, eds. The Chaos of Care and Care Theory, special issue of The Journal of Medicine and Philosophy 23, No. 2 (1998). Park, Jennifer A., and Victoria S. Wike. Bioethics in a Changing World. Upper Saddle River, NJ: Pearson Education, Inc., 2010. Pence, Gregory E. Classic Cases in Medical Ethics: Accounts of the Cases that have Shaped and Define Medical Ethics. New York: McGraw-​Hill Higher Education, 2008. Pence, Gregory E. The Elements of Bioethics. Boston, MA: McGraw-​Hill, 2007. Scully, Jackie Leach, Laurel E. Baldwin-​ Ragaven, and Petya Fitzpatrick, eds. Feminist Bioethics:  At the Center, on the Margins. Baltimore, MD:  Johns Hopkins University Press, 2010. Steinbock, Bonnie, John D. Arras, and Alex John London, eds. Ethical Issues in Modern Medicine: Contemporary Readings in Bioethics, 7th ed. New York: McGraw-​Hill Higher Education, 2009. Veatch, Robert M. A Theory of Medical Ethics. New York: Basic Books, 1981. Veatch, Robert M., ed. Medical Ethics, 2nd ed. Boston, MA: Jones and Bartlett, 1997. Veatch, Robert M., Amy M. Haddad, and Dan C. English. Case Studies in Biomedical Ethics. New York: Oxford University Press, 2010.

2 THE HIPPOCRATIC OATH AND ITS CHALLENGERS A Brief History

LEARNING OBJECTIVES FOR THIS CHAPTER ( 1) Describe the origins of the Hippocratic tradition. (2) Analyze the controversial or debatable aspects of the Hippocratic tradition. (3) Identify alternative sources to professional codes of ethics from religious, cultural, and secular traditions around the world. (4) Assess the limitations of professional codes for resolving moral disagreements and navigating moral problems that arise in healthcare.

Case 1 in Chapter  1 involved Jahi McMath, a girl who was unconscious. The physicians claimed she could never again recover consciousness, in fact, that she was dead based on brain criteria. The healthcare providers and her mother disagreed about how she should be treated. While the physicians felt it was appropriate to pronounce her dead and therefore to discontinue life support, her mother wanted it to continue. They could not even agree on whether the girl was dead or alive. Where might a physician, a parent, or a social observer of this scene turn for moral advice about how to handle a case like this? One possibility is to look at a code of ethics. These codes have been prepared by many different cultural, religious, and professional groups.They are lists or codifications of rules of the sort we identified in Chapter 1 as the second level of moral discourse, the next level of generality to which one might move if intuitions about specific cases resist resolution. Codes are meant to present moral rules (or perhaps rights) from the perspective of the group doing the writing. Sometimes they are limited to a specific domain such as medicine; in other codes, the scope is more general.

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Different specialties have promulgated codes of ethics that fit their own areas of expertise and responsibility, including nurses, respiratory therapists, clinical nutritionists, physical therapists, clinical social workers, and others. Many healthcare professionals view their code as a formalized way of binding them together as a moral community; the code provides a statement of values and standards for moral (not just legal or skills-​related) accountability. Physician and bioethicist Edmund Pellegrino famously argued that healthcare professionals commit themselves to a code of ethics publicly when they participate in an oath-​taking ceremony, but also every time they implicitly ask for the trust of patients, their loved ones, their colleagues, and society at large (2002). Pledging to a code of ethics can feel monumental for some graduating students, and ceremonial oath-​taking can impress on new professionals the moral gravity of their work.The Hippocratic Oath in particular has such force in some cultures that “Didn’t you take an oath?” has become a common rebuke of physicians. Nonetheless, it is important to ask whether a code of ethics provides sufficient guidance for navigating the tricky moral waters through which healthcare professionals will continually find themselves wading. And even if a code of ethics provides some guidance, does that mean that the professional is morally bound, absolutely? Are there important gaps in the content of these codes of ethics? Can a code of ethics settle all disputes? What should happen when the healthcare professional discovers that his or her personal or religious ethical position differs from that of the professional code?

The Hippocratic Tradition The Hippocratic Oath For many years, some physicians have used the Hippocratic Oath as that summary of moral/​medical wisdom. It is not, however, a timeless document used throughout history in all parts of the world. It is part of a collection of writings known as the Hippocratic corpus. We really don’t know who wrote the oath. The fifth-​century bce physician known as Hippocrates (one of the original leaders of medicine on the island of Cos in ancient Greece) was almost certainly not the author (Edelstein, 1967). The oath is generally believed to have been written about 100 years later. It is one of several ethical writings along with other, more scientific ones. Most people have not thought extensively about where the oath came from and, more importantly, about the belief system on which it was based. A  provocative observation on the island of Cos should arouse curiosity. On the island are the ruins of a Greek healing temple. According to local folklore, the school of Hippocrates was associated with this temple.1 When local residents are asked what happened to the building, they say the destruction happened during the Christianization of Greece. Apparently, at some point in history, the Hippocratic and Christian schools of thought were sufficiently at odds that they battled to the

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point that the temple was destroyed. At some point in history, Greek ethics and medicine were very different from ancient Christian ethics and medicine (Veatch and Mason, 1987). This raises questions that should concern moderns who see themselves standing in the Christian tradition, but affirming the oath. The most famous twentieth-​century scholar of this period, Ludwig Edelstein (1967), thinks that the Hippocratic tradition arose from the Pythagorean cult (named for the same Pythagoras who gave us the Pythagorean theorem in geometry), a cult that was interested in science, philosophy, and religion, and, if Edelstein is correct, produced a school of medicine in ancient Greece known as the Hippocratic school. More recent scholars have questioned this conclusion (Miles, 2004), but some acknowledge that the oath has many elements that suggest it came from a school of thought similar to that of the Pythagoreans (Carrick, 1985, p. 163; cf. von Staden, 1996, p. 409). The critical fact is that these scholars recognize the oath as coming out of a specific context of Greek thought of the day it was written. If all this is true, why should a group of modern, secular Western physicians caring for a patient in California, turn to a 2500-​year-​old Pythagorean cultic ritual oath for moral guidance? One will begin to see that however helpful it was for an ancient medical group, for those practicing medicine today it is controversial.

The Oath of Initiation Section The oath is divided into two parts, an oath of initiation followed by a code of conduct. The oath of initiation contains a pledge of loyalty to the teacher. If the teacher should ever become short of funds, it is the student’s moral duty to come to the rescue. There is also a rather strange oath of secrecy. This does not refer to a pledge of confidentiality regarding patient information. Rather, one taking the oath pledges not to reveal the knowledge of healing to lay people. Knowledge taught to physicians was believed to be very powerful. That power in the hands of the untrained could cause great harm. Pythagoreans also believed that knowledge should not be revealed to anyone outside the cult. We still see this attitude in modern medicine, particularly in some older physicians who are uncomfortable about sharing medical information with patients.2 This traditional practice is at odds with our current belief that the physician has a duty to educate patients about their medical conditions, a duty to educate the public about health and disease generally, and a duty to obtain consent to treat that requires that the patient be informed. The oath section also contains a pledge to the Greek gods and goddesses Apollo, Asclepius, Hygeia, and Panacea. Modern physicians have felt it necessary to modify that sentence. They might substitute authorities within their own religious tradition or even secular authorities. By contrast, other religious traditions, such as Judaism and Christianity, base their ethics on a covenant relationship between Yahweh and His people. They do not

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include a vow of secrecy.The Judeo-​Christian belief, especially in Protestantism, is that all are capable of using knowledge responsibly. Education is also important in secular liberal political philosophy. Liberal political philosophy has its origins in the philosophy of Locke, Hobbes, and Rousseau and reaches its best-​known political expression in the documents of the American Founding Fathers. It stresses the importance of the individual and commands respect for individual liberty even if other people believe they know what is best. It also incorporates a belief in the equality of moral worth of all persons, providing a basis for various concerns about social justice. Its proponents believe that people have a right to know; the development of an informed consent doctrine illustrates the pervasiveness of this conviction. None of this discussion of patients’ rights appears in any of the traditional Hippocratic writings. We begin to see that the Judeo-​Christian attitude and that of secular liberalism, as well as other traditions, have medical ethical doctrines that differ from this old cultic Hippocratic tradition.

The Code Section of the Oath The second half of the oath contains the code of ethics itself. It is divided into three parts, dealing with dietetics, pharmacology, and surgery.3 The third section contains an odd prohibition that requires physicians to swear that they will never practice surgery.Translations differ a bit, but the best translation prohibits operating “even on sufferers from stone,” which presumably refers to bladder stone surgery. Because that was relatively simple surgery even in ancient times, this statement seems to emphasize that the prohibition is categorical and not merely reflecting an awareness that surgery in ancient times was too dangerous. Why would a medical-​ethical oath forbid its physicians to practice surgery? One explanation is that the original meaning was that the Hippocratic physician should not practice surgery because surgery involves contamination; that is, touching blood and waste products, which is religiously defiling. Pythagoreans worried about such ritual contaminations. The oath does not say that surgery is inherently dangerous, but rather that Hippocratic physicians should leave surgery to persons who practiced that particular branch of medicine. In short, there is a moral division of labor like that seen in some traditional cultures, in which those in priestly roles were kept “pure.” This interpretation is supported by the fact that the oath holds out “purity and holiness” as the two key Hippocratic virtues. The oath also contains other prohibitions. The Hippocratic physician will not give deadly drugs. Euthanasia is proscribed, as are abortifacients.4 Most important, the oath contains what can be called its core principle, which is not primum non nocere or “first, do no harm” (despite common belief).5 Rather, the Hippocratic Principle states that the physician should benefit the patient according to his ability and judgment.6 Decisions are made as to what should benefit the patient, based on the physician’s ability and judgment, not the patient’s. Hence, the Hippocratic ethic

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is often considered paternalistic; that is, it approves of actions intended to benefit another person even if that person does not want the benefit. Often in medicine this paternalism arises because the healthcare professional is focusing exclusively on medical benefits of treatments while the patient may be willing to sacrifice these medical benefits in order to obtain nonmedical benefits considered more important or desirable. (Declining blood products on the basis of religious faith, leaving the hospital against medical advice to be at home with an ailing parent, and refusing potentially life-​extending treatments to minimize financial burdens on family are all possible examples.)7 When a physician limits the patient’s choices or frames decisions in a slanted manner for the sake of benefiting the patient medically, such actions pose a potential conflict with the principle of autonomy (see Chapter 7). By contrast, other ethics are of a different style. Some interpretations of Judeo-​ Christianity, for example, see this religious tradition as less paternalistic and different from the Hippocratic Oath in other significant ways. The other major religious and secular traditions of the world—​Islam, Hinduism, Buddhism, various Chinese traditions, Marxist thought, and, for our purposes probably the most significant, the liberal political philosophy of the modern West—​all have something that can be considered an ethic for medicine. All of these will be seen as contrasting to the Hippocratic tradition. Hence, if physicians or parents or anyone else is seeking moral guidance for a case such as that of Jahi McMath, they will need to determine on which of the many available ethical systems they wish to rely.

Modern Codes in the Hippocratic Tradition Percival’s Code of 1803 Several modern professional ethical codes stand in the Hippocratic tradition, at least in the sense that they stress the duty of the physician to benefit the patient. By far the most important for the English-​speaking world is the code of Thomas Percival, published in 1803 (Percival, 1985 [1803]). The need for a written ethical code for medicine arose from a typhoid and typhus epidemic in Manchester, England, that occurred in the 1790s. As a result, the Manchester infirmary staff members were overworked. Medicine in the eighteenth century in Britain was divided very much the way it was in the Hippocratic tradition. There were physicians who specialized in dietetics, surgeons, and apothecaries who worked with drugs. With the pressure of this epidemic, it was more than they could handle. They began to fight among themselves about who should be doing what. A physician named Thomas Percival had quit practicing medicine around this time because of a physical disability. He was well educated, and everybody thought well of him. The physicians embroiled in the dispute asked him to mediate. The result was a volume of ethical guidance that eventually became Percival’s code.Thus,

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The Hippocratic Oath and Its Challengers  23

the purpose of the code was originally to mediate quarrels among physicians, not to deal with relationships with patients. Percival’s code was published in revised form in 1803.While it is largely compatible with the Hippocratic Oath, Percival was more influenced by the philosophy of the Scottish Enlightenment, which also based morality on producing good consequences. In fact, Percival had little to say about the actual Hippocratic Oath. Nevertheless, he focused on benefit to the patient rather than the rights of patients in matters such as informed consent or open disclosure.8 This duty to benefit the patient combined with the absence of any recognition of the rights of patients is the hallmark of the Hippocratic tradition. It is one of the major differences between medical ethics that is Hippocratic and many of the other religious and secular ethics we shall be considering. The focus on benefit to the patient has become the foundation not only of British, but American professionally sponsored medical ethics as well.

The American Medical Association Code of 1847 In the United States at the beginning of the nineteenth century, a number of schools of medical thought existed side by side, just as in ancient Greece. Members of these schools began to fight among themselves, each wanting to establish theirs as the dominant school. In 1847, one group, representing what we now call allopathic (or orthodox and scientific) medicine, founded the American Medical Association (AMA) to accomplish this end and to combat what they thought of as quackery. They recognized that if theirs was going to be a profession, as opposed to a mere business, they had to have a code of ethics. (Sociologists of the professions note that writing a code of ethics is often a distinguishing mark of a profession.) In writing one, they turned to Percival’s code, taking whole sections of it and incorporating them into their Code of Ethics of the AMA originally written in 1847 and published the following year (American Medical Association, 1848). So both Britain and the United States had codes of ethics that are essentially Hippocratic in their content, focusing on benefit to the patient. However, they both also discussed the duties of physicians to benefit society, something the original Hippocratic ethic never mentioned.

The World Medical Association Declaration of Geneva, 1948 Just after World War II, the World Medical Association, a conglomeration of national medical societies, needed a code to respond to the medical experiments in the Nazi concentration camps. In 1948 this group developed the Declaration of Geneva (World Medical Association, 1956). Its contents are remarkably similar to the Hippocratic Oath. Deleting from the old oath the references to Hygeia and Panacea and all the old gods and goddesses and the prohibition on surgery and

24  The Hippocratic Oath and Its Challengers

abortifacients, it still includes the key sentence that is a slightly modified version of the Hippocratic Principle. In its original 1948 version, it read, “the health of my patient will be my first consideration.” The World Medical Association was no more cognizant than the Hippocratic Oath of the problem that arises when the patient does not want her health maximized—​that is, when she has something else on her agenda other than health, or when she disagrees with the physician about what would count as improving her health or well-​being. When we consider codes that do not limit themselves to the Hippocratic Principle, we shall see that the World Medical Association in the recent revisions of its code adds other significant ethical considerations.

Other Contemporary Oaths or Codes in the Hippocratic Tradition By the end of the twentieth century, fewer and fewer medical schools were administering an oath strictly within the Hippocratic tradition to their graduates, and essentially none were administering the original form of the oath. Schools are now using a wide variety of oaths, some written by the individual schools or even by individual classes of students. Similar patterns appear in other countries with some schools using the Hippocratic form, usually modified, and others using an oath of entirely different origin. In post-​Soviet Russia, physicians have constructed an oath for the Russian physician (“Solemn Oath of a Physician of Russia,” 1993). Wanting to replace the Soviet oath with its significant Marxist influences, Russian physicians took the old Hippocratic Oath and translated it into Russian, cleaning it up in a manner similar to that of the World Medical Association’s original Declaration of Geneva. Another example is the Academic Oath of St. George’s University School of Medicine in Grenada. It also uses a rewrite of the Hippocratic Oath. Its version, however, requires the graduating medical student to work for the benefit of the patient rather than merely the patient’s health. The key sentence reads, “The regimen I prescribe will be for the good of my patients, according to my ability and judgment.”We shall see in Chapter 6 that there can be a difference between working for the patient’s total welfare and focusing more narrowly only on the patient’s health. There are other rewritings, such as the Florence Nightingale Pledge for nurses. It wasn’t written by Florence Nightingale any more than the Hippocratic Oath was written by Hippocrates, but it is a thinly modified rewriting of Hippocrates’ oath (“Editorial Comment,” 1911). Until the later decades of the twentieth century, then, physicians and other healthcare professionals often used some adaptation of the Hippocratic Oath as their ethical code (and some continue to do so to this day). The definitive feature is a commitment to benefiting the patient without any acknowledgment of patients’ rights, such as the right to be told the truth or to give consent before being treated. A right is a claim to a moral or legal entitlement. Rights cannot be defeated merely by appeals to good consequences that would result from failing to honor them. The more purely Hippocratic codes also pay no attention to the

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welfare of society or other individuals (although we have seen that both Percival and the AMA depart from the standard Hippocratic formula by mentioning some secondary concern for social benefits). But beginning about 1970, the Hippocratic tradition started to collapse. Observing this collapse is in a way quite exciting; it must be like being with Galileo during the revolution in astronomy or with Albert Einstein when atomic physics was emerging. A new medical ethics emerged on the horizon, particularly for Western culture, which has its roots in ancient Judeo-​Christianity, but more explicitly in secular liberal political philosophy.

The Collapse of the Hippocratic Tradition The Hippocratic Oath is being challenged in three ways. One preliminary challenge deals with the way in which benefits are assessed. The oath makes an enormous presumption when it says that a physician should judge what is best for his or her patient according to the physician’s ability and judgment. In some cases, the physician’s colleagues who are competent in their field may not concur. Even if they do, the patient may prefer some other course. In this sense, the oath’s assessment of benefit is subjective and the individual physician’s subjective judgment is what counts. In Chapter 6 we shall discuss further the problems with the subjective notion that it is the physician’s standard of benefit that is decisive. A second challenge involves problems that arise when benefits conflict with other kinds of moral duties, particularly those related to rights of patients and obligations owed to them. Many ethical theories hold that there is more to ethics than merely producing good consequences. They affirm moral obligations and rights that are relevant to deciding what is ethically right conduct regardless of the consequences. In Chapter 7 we shall talk about conflicts between benefiting the patient and respecting certain rights of the patient, including the right to the truth, the right to have one’s autonomy respected, and the right to have promises kept. Then in Chapters 8 and 9 we shall talk about the rights of the dying. The third challenge to the Hippocratic tradition arises when there is a conflict between the interests of the patient and those of others. The oath, at least in its original form, focuses exclusively on the individual patient. In Chapter 12 we will look at the way in which this focus on the individual conflicts with the healthcare professional’s duty to others in the society in the areas of resource allocation, health insurance, organ transplant, and research medicine.

Codes and Oaths Within the Medical Profession Breaking with the Hippocratic Tradition The Nuremberg Code, 1946 Several kinds of medical codes or oaths break with this Hippocratic tradition. The first and most dramatic challenge in modern times came shortly after World War

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II with the Nuremberg trials. People began to question Nazi physicians about the painful, sometimes lethal, studies they had been doing on unwilling concentration camp prisoners. It became obvious that research on humans could be ethically controversial. The agenda being pursued in these studies was set by the Nazi state. The experiments were not for the benefit of prisoners in concentration camps. It is the very nature of medical research (as opposed to innovative therapy) that the primary goal is to produce knowledge, not to benefit the subject. On the other hand, the Hippocratic ethic requires that physicians act solely for the individual patient’s benefit. Logically, all medical research would be unethical. The Nazi physicians had abandoned the traditional ethical commitment of the physician to the individual patient’s welfare. To respond to this problem, one option would be to go back to the Hippocratic formula, requiring that physicians focus only on individual patient welfare. That would mean, however, that they could never do any more research for the purpose of promoting the good of society unless there was the expectation of direct benefit to the patient participant. While the Hippocratic ethic would have prohibited the Nazi experiments, it would also have foreclosed even the most benign and defensible research. Instead of returning to a Hippocratic model, spokespersons for Western society acknowledged that research was necessary for the benefit of humankind, but they also realized that some protection was needed for the individual research subject. This protection came in the form of requiring consent from subjects so they could look out for their own interests. The resulting Nuremberg Code in 1946 was the first medical-​ethical document in the 2500 years after Hippocrates that mentioned the concept of informed consent; that is, the notion that the patient or subject has the right to be informed of the relevant facts of what is being proposed and to approve or disapprove before the physician proceeds. A second important difference exists between the Nuremberg Code and the codes in the Hippocratic form. The Nuremberg Code is a public document of international law, not one written by the medical profession and bestowed on the public. We are beginning to see the clash of two different perspectives that represent two radically different ethical traditions. The result was an explosion beginning in about 1970, and it was dramatic. One strand, represented by the Nuremberg Code, is grounded in liberal political philosophy. The other, from the Hippocratic tradition, shows no such influence. This Hippocratic tradition is older, is more paternalistic, and, as we are beginning to discover, is incompatible with the liberalism on which the Nuremberg Code is based, at least in certain areas like research medicine.

The American Hospital Association Patient Bill of Rights, 1973 Another document breaking with the Hippocratic view came from the American Hospital Association (AHA) in 1973, right at the beginning of the

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full-​blown clash between the Hippocratic and liberal traditions.The Patient Bill of Rights was revised in 1992 and then replaced with a less formal statement entitled The Patient Care Partnership:  Understanding Expectations, Rights and Responsibilities (American Hospital Association, 2003). The AHA documents go a long way toward focusing on the rights of patients. The original Bill of Rights included explicit reference to informed consent and a right to information. The newer statement incorporates the idea even though these words are not mentioned. Nothing like that ever appeared in the Hippocratic tradition. This affirmation of patient rights is coming not from the Medical Association but the Hospital Association. Nevertheless, it says nothing about the more social dimensions of medical ethics such as how scarce resources should be allocated and whether those without health insurance have a right of access to medical or hospital care.

American Medical Association Principles of 1980 It was not until 1980 that the AMA changed its code in a dramatic, significant way. The new version, adopted that year and published in 1981, finally begins speaking of the rights of patients (American Medical Association, 1981). Modest changes were made in 2001 (American Medical Association, 2001). The use of the word “rights” in this new set of principles is a signal that something new is going on. The Hippocratic Oath never mentions anyone’s rights. The language of rights is, after all, a modern notion grounded in liberal political philosophy.

The World Medical Association Declaration of Geneva Revisions Up to 2017 When the World Medical Association (WMA) first adopted its Declaration of Geneva in 1948, it closely followed the wording of the Hippocratic Oath. It has undergone revisions, gradually abandoning its exclusive focus on the Hippocratic Principle. In 1968, it strengthened the confidentiality provision. In 1983, it seemed to soften its pledge to respect human life from the time of conception, changing it to read “from its beginning.” In 1994, it references gender-​inclusiveness and added gender and sexual orientation to its nondiscrimination provision. In 2005, it simply pledged to respect human life (removing “from its beginning”). In 2006, it added for the first time a commitment not to violate human rights and civil liberties. Most recently, in 2017 it added a pledge to respect the autonomy and dignity of the patient. While up until this point the Declaration had pledged the physician to hold the “health” of the patient as the physician’s “first consideration,” in this revision the pledge was expanded to focus on the patient’s “health and well-​ being.” In all, the WMA has moved considerably beyond the paternalistic focus on the individual patient’s health.

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Other Professional Association Codes In the 1980s at about the same time that the AMA changed its approach, many other national medical associations began abandoning their more traditional Hippocratic codes in favor of revised documents that more explicitly affirmed consent, confidentiality, and other rights of patients. For example, the Federal Council of Medicine of Brazil adopted a new code in 1988. The New Zealand Medical Association did so the following year. Any healthcare professional working in a clinical setting can find recent codes of ethics pertaining to the details of their work. The recognition of patient rights is emphasized in codes published by the International Associations of Clinical Nutritionists, American Nurses Association, American Association for Respiratory Care, American Physical Therapy Association, and Clinical Social Work Association, to name a few.

Alternative Oaths As the Hippocratic Oath became more controversial, schools began adopting alternative oaths. One of the most common is attributed to Louis Lasagna, the former academic dean of Tufts University’s School of Medicine. It loosely follows the Hippocratic Oath, but adds acknowledgment of social obligations and a stronger commitment to confidentiality. It omits the prohibition on abortion and giving of deadly drugs, but does not otherwise acknowledge patient rights. Some schools have chosen to write a code of their own (Sritharan et al., 2001). Sometimes each class writes its own code. This raises interesting issues such as whether it is plausible for all members of a graduating class to hold the same moral positions and what should happen when graduates of different schools with different codes end up practicing medicine in the same hospital or group practice.

Sources from Outside Professional Medicine We also begin to see the emergence of medical ethical documents from other sources to which physicians, parents, or others confronting difficult decisions such as that involving Jahi McMath might turn.

Judaism, Catholicism, and Protestantism Just as international law has provided a source for a code coming from outside the medical profession, religious traditions also have medical ethics. They are seen in Talmudic Judaism (Rosner and Bleich, 1979) and Catholic moral theology (United States Conference of Catholic Bishops, 2009). Protestant ethics has positions on many medical ethical issues including abortion, euthanasia, and the right of access

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to medical care that come from moral sources fundamentally different from those of professional medical groups.

Hinduism Outside of the West, many ancient religious traditions have developed medical ethical positions as well. The Hindu Vedic scriptures, for instance, contain a medical ethic. The Vedic texts are classical religious writings. One group of those writings, the Ayurveda, contains medical material including a code of ethics called the Caraka Samhita (“Oath of Initiation [Caraka Samhita],” 1978). This code required that the physician not injure or abandon the patient and not cause his death. One of the provisions in that document that makes very little sense to Westerners, but is understood within the Vedic tradition, is a pledge of the physician that he will not treat those who are haters of the king. There is nothing like this provision in Western medical ethics, but it is perhaps more comprehensible against the backdrop of the religious traditions of ancient India including the notion of karma with its suggestion of a kind of fatalism and just reward.

Buddhism The classical Buddhist ethic involves an eightfold path that incorporates five precepts. These precepts include prohibitions on killing, lying, and drinking intoxicants, revealing that the Buddhist tradition has definite implications for the practice of medicine. A central aim of Buddhism is the removal of suffering (dukkha), which extends beyond physical suffering to the deeper existential suffering that characterizes repeated birth and death. Although medicine cannot alleviate suffering in all its forms, physicians can provide some relief and free the body and mind for piety (Keown 2001).

Ancient Chinese Thought Ancient China developed a complex, rich culture that included the thought of Confucianism as well as strands of Buddhist and Taoist thinking. By the seventh century ce, Chinese writing began to focus explicitly on medicine. Sun Simiao included a famous treatise “On the Absolute Sincerity of Great Physicians” in his work The Important Prescriptions Worth a Thousand Pieces of Gold. Widely believed to reflect Buddhist and Taoist influences, it affirms special moral duties for professional physicians.

Islam There are a number of Muslim oaths or codes for physicians. The Islamic Code of Medical Ethics was prepared in Kuwait in an international meeting of Islamic

30  The Hippocratic Oath and Its Challengers

scholars in 1981 (International Organization of Islamic Medicine, 1981). Islamic medicine has a strong prohibition on killing, including mercy killing and abortion. There is an affirmation of Allah’s will.

Japan Japanese ethics also has rich traditions relevant to medical ethics. Consider the following case:

CASE 2 PHYSICIAN ASSISTANCE IN A MERCIFUL HOMICIDE A young woman had just given birth, in Tokyo. She was unmarried, had no close relatives who could help her raise this child, and had a malignancy of the breast. In fact, the malignancy had now metastasized. The oncologist told her she probably only had a few more months to live. The woman said to the oncologist, “I want you to help me to do the most loving thing that I can do for my child. I would like you to tell me how I can mercifully kill my child so that when I die, the child will not be condemned to the life of an orphan.” The physician pointed out that there were other possibilities. For instance, someone could adopt the child. The mother understood all this. She said, “My child is a girl. My child has a deformed hip. That close bond between mother and child is destroyed forever with my death. So my child will never be able to do well.”

There is a concept in Japanese culture called amae, which is roughly translated as dependency, a close bond between a mother and child that would be irretrievably destroyed with the mother’s death (Doi, 1981). There is also in Japanese culture a concept called joshi. Joshi can be translated as “love killing,” or mercy killing. It is sometimes carried out by the head of a household who is disgraced in business. He might, as a merciful act, kill not only himself, but also take the lives of his wife and children so they would not be disgraced. Although illegal today, this practice, which comes out of the more traditional Edo period in Japan, still occurs. This woman’s request reflected these old beliefs. Japanese people today understand the concept, and it will not necessarily surprise them that a mother could ask for help from her physician not only to kill herself, but to kill her infant child.The striking thing about this story is that the physician understood. Most physicians, even in Japan, would not have cooperated, but they well might understand. It is impossible to understand that story without knowing a great deal about traditional Shinto doctrine and beliefs. It is the exception rather than the rule, but it does happen.

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The Oath of the Soviet Physician All of these traditions in medical ethics leave us with the realization that those facing a choice in Jahi McMath’s case and in similar situations cannot assume that the Hippocratic ethic and the professional consensus about what is ethical are automatically correct. There are many different traditions specifying what is ethical in medicine. These are not limited to the religious traditions. In secular philosophy, a number of schools of thought have implications for medical ethics that differ from the Hippocratic tradition. One example is the Soviet Oath from 1971 (“Oath of Soviet Physicians [1971],” 1978). It contains, among other things, a pledge of loyalty to the Communist society. Other political philosophies have implications for medicine as well.

Liberal Political Philosophy One of these is seen in the most important intellectual movement in modern Western culture, the tradition of liberal political philosophy. It is the dominant philosophical orientation of secular society in the United States and most other nations of the West. Liberalism emerged as the major challenger of the more paternalistic Hippocratic tradition in the last quarter of the twentieth century. Patients’ bills of rights are emerging that reflect liberal political philosophy such as the Council of Europe Convention on Human Rights and Biomedicine (1997, revised 2014) and the United States Consumers’ Bill of Rights of the President’s Advisory Commission on Consumer Protection and Quality in the Health Care Industry (1997).

The UNESCO Universal Declaration on Bioethics and Human Rights A newer and potentially very significant development in the history of codes of medical ethics emerged in 2005 when the General Conference of the United Nations Economic, Scientific, and Cultural Organization (UNESCO) adopted a Universal Declaration on Bioethics and Human Rights,9 seen as a bioethics-​ oriented follow-​up of the 1948 Universal Declaration of Human Rights. This document represents a new stage in biomedical ethics codifications. It is a document that plausibly can be seen as speaking for all countries of the world and it is from a public agency, UNESCO, rather than the product of a professional association. Thus, it is not surprising that it announces a set of principles that go beyond the Hippocratic idea of benefiting the individual patient and protecting the patient from harm. It also includes concern for the welfare of social solidarity and responsibility as well as incorporating concerns about autonomy, consent, privacy, and justice as well as human rights, all features absent from traditional Hippocratic ethics.

Hippocratic Codes or Oaths Closely reflecting the Hippocratic Tradition: The Hippocratic Oath The Hippocratic Oath Insofar as a Christian May Swear It The Florence Nightingale Pledge The Declaration of Geneva (1948) State University of New York at Syracuse The St. George’s University Academic Oath The Oath of the Russian Physician

Qualified Hippocratic Content: Percival’s Code of 1803 The AMA Principles of 1847 Non-Hippocratic Codes and Oaths Professionally Generated Codes Significantly Departing from the Hippocratic Tradition: The AMA Principles of 1980 American Nurses’ Association, Code for Nurses with Interpretive Statements (1985) The Chilean Medical Association (1983) The American Nurses Association Code of Nurses (1985) The Federal Council of Medicine, Brazil (1988) The New Zealand Medical Association (1989) Declaration of Geneva (2017) Medical Ethical Systems Based on Non-professional Ethical Traditions Ten Maxims for Physicians and Ten Maxims for Patients, China The Ethical and Religious Directives for Catholic Health Facilities The Caraka Samhita of the Hindu Ayur Veda The Seventeen Rules of Enjuin, Japan, Seventeenth Century The Islamic Code of Medical Ethics The Oath of Maimonides (Jewish) The Oath of Soviet Physician (1971) The AHA Patients’ Bill of Rights Council of Europe Convention on Human Rights and Biomedicine (1997) The Consumers’ Bill of Rights of the President’s Advisory Commission on Consumer Protection and Quality in the Health Care Industry (1997) FIGURE 5  Types

of Codifications of Medical Ethics

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The Hippocratic Oath and Its Challengers  33

After exploring the question of who it is who has full moral standing in the next two chapters, we will take a brief look at the different approaches (or theories) for doing bioethical analysis. Then in Chapter 6 we will begin an analysis of the Hippocratic approach to medical ethics. We will ask what moral problems arise if we assume that the primary goal of medicine is to produce benefits for the patient and to protect the patient from harm.

Key Concepts Hippocratic Oath The code of physician ethics attributed to the Greek physician, but more likely written by his followers in the fourth century bce. Often believed to be related to a Pythagorean cultic belief system. Hippocratic Principle The core principle of the Hippocratic Oath, holding that the physician pledges to benefit his patient according to his ability and judgment and protect the patient from harm; cf. Paternalism. Liberal Political Philosophy The dominant commitment of secular society in the United States and most other nations of the West that has its origins in the philosophy of Locke, Hobbes, and Rousseau and reaches its most well-​known political expression in the documents of the Founding Fathers of the American political system. It stresses the place of the individual and commands respect for the liberty of the individual. It also incorporates a belief in the equality of moral worth of all persons, providing a basis for various concerns about social justice. Paternalism When an individual, group, or governing body tries to benefit another by either overriding or not soliciting the wishes of the potential beneficiary. Medical paternalism occurs when a healthcare professional acts for the benefit of a patient without consent from the patient or the patient’s surrogate decision-​ maker. Medical paternalism can take different forms, such as limiting or framing choices based on what the physician thinks is prudent, withholding relevant medical information, or performing procedures or tests without a proper informed consent process. Rights Justified moral or legal claims to entitlements or liberties often seen as taking precedence over (“trumping”) considerations of consequences. Rights normally stand in a reciprocal relation with moral or legal rules; that is, if someone has a rights claim against some other party, that other party is duty-​bound by a rule requiring that the right be respected.

Bibliography American Association for Respiratory Care. AARC Statement of Ethics and Professional Conduct. 2015. http://​ethics.iit.edu/​ecodes/​sites/​default/​files/​aarc-​statement-​of-​ethics-​ and-​professional-​conduct.pdf, accessed August 18, 2019.

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American Hospital Association. A Patient’s Bill of Rights. Chicago, IL: American Hospital Association, 1992. American Hospital Association. The Patient Care Partnership:  Understanding Expectations, Rights and Responsibilities. Chicago, IL: American Hospital Association, 2003. American Medical Association. Code of Medical Ethics:  Adopted by the American Medical Association at Philadelphia, May, 1847, and by the New York Academy of Medicine in October, 1847. New York: H. Ludwig and Company, 1848. American Medical Association. Current Opinions of the Judicial Council of the American Medical Association. Chicago, IL: American Medical Association, 1981. American Medical Association. Principles of Medical Ethics of The American Medical Association. 2001. www.ama-​assn.org/​sites/​default/​files/​media-​browser/​principles-​of-​medical-​ ethics.pdf, accessed August 18, 2019. American Medical Association. Code of Medical Ethics of the American Medical Association. Chicago, IL: American Medical Association, 2016. American Nurses Association. Code of Ethics for Nurses with Interpretative Statements. Silver Spring, MD, 2015. www.nursingworld.org/​coe-​view-​only, accessed August 18, 2019. American Physical Therapy Association. Code of Ethics for the Physical Therapist. 2013. www. apta.org/ ​ u ploadedFiles/ ​ A PTAorg/ ​ A bout_ ​ U s/ ​ Policies/ ​ E thics/ ​ C odeofEthics.pdf, accessed August 18, 2019. Baker, Robert. “Introduction.” In The Codification of Medical Morality:  Historical and Philosophical Studies of the Formalization of Western Medical Morality in the Eighteenth and Nineteenth Centuries. Vol. 2:  Anglo-​American Medical Ethics and Medical Jurisprudence in the Nineteenth Century, ed. Robert Baker. Dordrecht, Netherlands:  Kluwer Academic Publishers, 1995, pp. 1–​22. Baker, Robert, Dorothy Parker, and Roy Porter, eds. The Codification of Medical Morality: Historical and Philosophical Studies of the Formalization of Western Medical Morality in the Eighteenth and Nineteenth Centuries. Vol. 1:  Medical Ethics and Etiquette in the Eighteenth Century. Dordrecht, Netherlands: Kluwer Academic Publishers, 1993. Berlant, Jeffrey L. Profession and Monopoly: A Study of Medicine in the United States and Great Britain. Berkeley, CA: University of California Press, 1975. Carrick, Paul. Medical Ethics in Antiquity: Philosophical Perspectives on Abortion and Euthanasia. Dordrecht, Holland: D. Reidel Publishing Company, 1985. Clinical Social Work Association. CSWA Code of Ethics. 2016. www. clinicalsocialworkassociation.org/​CSWA-​Ethics, accessed August 18, 2019. Council of Europe, European Convention on Human Rights and Biomedicine. Revised 2014. www.humanrights.ch/​en/​standards/​ce-​treaties/​biomedicine/​, accessed August 18, 2019. Doi, Takeo. The Anatomy of Dependence. Tokyo: Kodansha International Ltd., 1981. Edelstein, Ludwig. “The Hippocratic Oath: Text,Translation and Interpretation.” In Ancient Medicine:  Selected Papers of Ludwig Edelstein, ed. Owsei Temkin and C. Lilian Temkin. Baltimore, MD: Johns Hopkins Press, 1967, pp. 3–​64. “Editorial Comment.” The American Journal of Nursing 11 (1911): 596. Foster, Byron A., Matthew Iles-​Sheh, and John Stull. “The Uses of Medical Oaths in the Twenty-​First Century.” The Pharos (Spring 2016):  20–​ 25. http://​alphaomegaalpha. org/​pharos/​PDFs/​2016-​2-​Crawshaw-​Foster-​Iles-​Smith-​Stull.pdf, accessed August 18, 2019. International & American Associations of Clinical Nutritionists. Certified Clinical Nutritionist Code of Professional Ethics and Responsibility. 2005. www.iaacn.org/​wp-​content/​uploads/​ sites/​3489/​2016/​11/​CCN-​Code-​of-​Professional-​Ethics-​20151.pdf, accessed August 18, 2019.

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International Organization of Islamic Medicine. Islamic Code of Medical Ethics. Kuwait: International Organization of Islamic Medicine, 1981. Keown, Damien. Buddhism and Bioethics. New York: Palgrave, 2001. Miles, Steven H. The Hippocratic Oath and the Ethics of Medicine. Oxford and New York: Oxford University Press, 2004. “Nuremberg Code, 1946.” In Encyclopedia of Bioethics, Vol. 4, ed. Warren T. Reich. New York: The Free Press, 1978, pp. 1764–​1765. Nutton,Vivian. Ancient Medicine. London/​New York: Routledge, 2004. “Oath of Initiation (Caraka Samhita).” In Encyclopedia of Bioethics, Vol. 4, ed. Warren T. Reich. New York: The Free Press, 1978, pp. 1732–​1733. “Oath of Soviet Physicians (1971).” In Encyclopedia of Bioethics, Vol. 4, ed. Warren T. Reich. New York: The Free Press, 1978, pp. 1754–​1755. Orr, Robert D., Norman Pang, Edmund D. Pellegrino, and Mark Siegler. “Use of the Hippocratic Oath: A Review of Twentieth Century Practice and a Content Analysis of Oath Administered in Medical Schools in the U.S. and Canada in 1993.” Journal of Clinical Ethics 8 (1997): 377–​388. Pellegrino, Edmund. “Professionalism, Profession and Virtue.” The Mount Sinai Journal of Medicine 69, No. 6 (2002): 378–​384. Percival, Thomas. Percival’s Medical Ethics, 1803. Reprint. Edited by Chauncey D. Leake. Baltimore, MD: Williams and Wilkins, 1927. Percival, Thomas. Medical Ethics; or, a Code of Institutes and Precepts, Adapted to the Professional Conduct of Physicians and Surgeons by Thomas Percival, MD. Together with an Introduction by Edmund D. Pellegrino, MD. Birmingham, AL: The Classics of Medicine Library, 1985 [1803]. Rosner, Fred, and J. David Bleich, eds. Jewish Bioethics. New York: Sanhedrin Press, 1979. “Solemn Oath of a Physician of Russia.” Kennedy Institute of Ethics Journal 3, No. 4 (1993): 419. Sritharan, Kaji, Georgiana Russell, Zoe Fritz, Davina Wong, Matthew Rollin, Jake Dunning, Philip Morgan, and Catherine Sheehan. “Medical Oaths and Declarations,” BMJ 323 (2001):1440–​1441. Temkin, Owsei. Hippocrates in a World of Pagans and Christians. Baltimore, MD:  Johns Hopkins University Press, 1991. Tyson, Peter. “The Hippocratic Oath Today.” NOVA. 2001. www.pbs.org/​wgbh/​nova/​ body/​hippocratic-​oath-​today.html, accessed August 18, 2019. United States Conference of Catholic Bishops. Ethical and Religious Directives for Catholic Health Care Services, 5th ed. Washington, DC:  United States Catholic Conference, 2009. www.usccb.org/​issues-​and-​action/​human-​life-​and-​dignity/​health-​care/​upload/​ Ethical-​Religious-​Directives-​Catholic-​Health-​Care-​Services-​fifth-​edition-​2009.pdf, accessed August 18, 2019. Veatch, Robert M. Patient, Heal Thyself: How the New Medicine Puts the Patient in Charge. New York: Oxford University Press, 2009. Veatch, Robert M., and Carol G. Mason. “Hippocratic vs. Judeo-​ Christian Medical Ethics: Principles in Conflict.” The Journal of Religious Ethics 15 (1987): 86–​105. von Staden, Heinrich. “ ‘In a Pure and Holy Way’: Personal and Professional Conduct in the Hippocratic Oath?” Journal of the History of Medicine 51 (1996): 404–​437. Waddlinton, Ivan. “The Development of Medical Ethics: A Sociological Analysis.” Medical History 19, No. 1 (1975): 36–​51.

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Waddlinton, Ivan. The Medical Professional in the Industrial Revolution. Atlantic Highlands, NJ: Humanities Press, 1984. World Medical Association. “Declaration of Geneva.” World Medical Journal 3, supplement (1956): 10–​12. World Medical Association. WMA Declaration of Geneva. 1948–​2017. www.wma.net/​ policies-​post/​wma-​declaration-​of-​geneva, accessed August 18, 2019.

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3 THE BASIS OF MORAL STANDING IN DEBATES ON DEFINING DEATH, ABORTION, STEM CELLS, AND ANIMAL WELFARE

LEARNING OBJECTIVES FOR THIS CHAPTER ( 1) Distinguish different notions of moral standing, person, and human. (2) Explain why some beings could have more or less moral standing than others. (3) Identify the fundamental assumptions about moral standing that are common in bioethics, such as in debates about the definition of death, abortion, the use of stem cells, and the treatment of nonhuman animals.

In the previous chapter we saw that different cultures and social groups have different medical ethical codes or oaths. One way or another they provide compilations of moral principles, virtues, rules, or rights that specify the norms of morally right conduct and character. In addition to the question of which set of norms should be used, they must also address another major issue. To whom do these norms apply? That might seem to be a question with an obvious answer—​ they apply to human beings. The question is, however, far more complex. At least four problems arise. First, some codes are written as if they apply only to members of certain professional groups. They delineate norms of conduct for physicians, nurses, or other health professionals. But even these raise troublesome questions. Are the writers claiming that they apply to all members of the relevant profession or only to those who are members of the organization that adopted the code? For example, the American Medical Association’s (AMA) code prohibits active mercy killing (euthanasia). Does that prohibition apply to all physicians, even those who are not members of the AMA? Certainly, it does not make sense for it to apply to

38  The Basis of Moral Standing in Debates

physicians who are not American. Also, some codes written by professional groups specify behavior that is morally required for patients and other lay people. Can these professional organizations claim authority to specify what is morally right conduct for those who are not even in the profession and cannot be members of these organizations? Can these norms be imposed on lay people who have no voice in creating them? A second problem is that professional groups are not the only ones who write codes purporting to state norms of professional conduct. Religious groups and governmental agencies write them as well. One can imagine a religious group claiming authority to articulate norms for its physician members. It might even claim to know what the norms of conduct are for those who are not members of the religious body. Secular philosophies might make similar claims. Ethical norms are usually thought to be universal; that is, a single system of ethics applies to all. But there are many different groups claiming to know what those norms are. For example, since both religious and professional groups claim to be able to articulate the norms of conduct for physicians and other health professionals, a physician may feel he or she is subject to the norms articulated not only by the professional group, but also by his or her religion—​and the two may not approve of or permit the same conduct. Third, ethical duties in the biomedical world may extend beyond living human beings. In the era of organ transplantation, people may be seen as having moral duties regarding bodies of the newly dead. In the era of genetic manipulation, stem cells, and test tube babies, the same can be said for human gametes and embryos. Many bioethicists, scientists, and governmental representatives argue that there are moral limits on how these are treated, even if they are not considered living human beings. Whether an embryo—​or for that matter a fetus—​has the same moral standing as (other) living human beings is a matter of enormous controversy. Whether the moral principles—​such as the principle of beneficence or avoidance of killing—​should apply (or could apply) to these entities with a human genetic endowment will require much more philosophical work. Also, some nonhuman animals appear to most people to have some kinds of moral claims on us. Those claims may not be as weighty, depending on the type of creature, but they exist nonetheless. We need to understand to whom the principles apply—​to which humans (if not to all) and to which beings that are not human (if any). Finally, the very language of morality and moral standing is complex. We speak in casual conversation of humans, persons, individuals, and human beings, sometimes interchangeably and sometimes with important moral differences presumed or implied. We need to understand how these terms should be to be used in more careful ethical discourse. In this chapter we first look at these linguistic questions. Then we examine four major areas of bioethics that play key roles in deciding to whom we owe moral obligations and to what extent they bind us. We examine the debate about the definition of death to see when we

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believe we should quit treating a human as having the full moral standing that is attributed to normal humans. Following that, we look at the other end of life to the even more controversial area of abortion to see when we should begin treating humans as having full moral standing. The link between the two will quickly become clear. Third, since the writing of earlier editions of this book, the new and controversial area of the use of stem cells has emerged. We will take up the aspects of the stem cell controversy related to moral standing. Finally, we look at the controversy over animals to see whether any nonhuman animals have moral standing and, if so, how much.

Persons, Humans, and Individuals: The Language of Moral Standing The Concept of Moral Standing We need to identify those to whom the moral norms apply; that is, those who are owed duties of beneficence, nonmaleficence, and the other moral obligations. One way of speaking is to refer to any being to whom we owe some kind of duty as having moral standing. We usually believe that humans have moral standing, but other animals may as well. Humans with fundamentally different capacities also pose some difficult questions—​the permanently unconscious, for example. Nevertheless, most people believe these humans have moral claims as well. It is also widely believed that nonhuman animals are owed at least something. Almost everyone believes we should not cause them pain, certainly not without good reason. Whether we have a duty not to kill them is more controversial. Some people even believe that we have duties toward plants and inanimate objects. Many believe that our character develops in part based on how we treat animals and the environment, and care ethics is not clearly limited to human–​human bonding. Feminist environmentalists argue for the interconnectedness of humans, animals, and the environment and the need for humans not to view this relationship with nature as one of domination. Assuming we do have such duties toward nonhuman animals, plants, and inanimate objects, the reason we have them is the cause of further controversy. It may be because they are the possessions of a human, in which case the moral claims may be indirect. Both religious and secular people often speak as if we have duties toward trees, ecological systems, or natural landscapes. For religious people, it may be because they believe that these are God’s creation or God’s possessions. For secular ecologists, the reasons why we have such duties are harder to articulate. It may be because other human beings have claims to enjoy the rest of nature, but often ecologists speak as if the duties toward the environment were more direct, that there is something intrinsically wrong with diminishing biodiversity even if humans have no interest in the particular species and get no benefit from it. This may be because we believe that, even if the genes of the species are not useful now,

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we may find that genetic material useful to humans in the future. Or it may be because it is intrinsically valuable and simply deserves protection. Whenever we speak this way, we can say that any animals, plants, and inanimate objects to whom we owe some kind of duties have moral standing. Clearly, not all the moral principles can apply in each case, however. It is hard to imagine what it would mean, for example, to speak of a duty to respect the autonomy of trees or to tell the truth to them, although we can imagine what it might mean to have a duty to avoid killing them. It is common to speak as if humans have a special moral standing. Some say that they each have maximum or “full” moral standing. Moreover, if each human has maximum standing, the standing of each is equal. Whatever duties we owe to them, we owe to them equally.Those who hold such a view would say that these humans have full and equal moral standing. It is not that those outside this group have no standing at all. For example, it seems we owe lower animals such as rabbits something. At least we should not inflict pain on them without good reason. It appears that we can divide the world into those who have full standing and those to whom we owe some lesser duties. Most people, rightly or wrongly, tend to treat lower animals as having a lesser status. They would be quite willing to sacrifice a rabbit for the welfare of a human child, but unwilling to sacrifice a child for the welfare of rabbits, even if the amount of good we could do to the rabbits of the world was enormous. Likewise, if a human child and a bobcat were both starving and we have enough food only for one, certainly most people would favor giving the food to the child. (In fact, many would support killing the bobcat to feed to the child, but no one would favor killing the child to feed to the bobcat.) We can say of such special moral status that we give the child, that he or she has full moral standing. One of the critical questions in bioethics is who has full moral standing. When we divide living beings into those with full standing and those with some lesser standing, there is a burden of justification when the time comes to draw the dividing line. It is that problem that is addressed in this chapter.

Moral and Descriptive Uses of the Term Person The English language has done us a disservice by giving us so many ways of referring to humans while at the same time often lacking precision in how these terms are used. We speak of human beings, persons, and individuals, as well as using more technical terms such as “moral agents.” In the field of ethics, sometimes these terms do important moral work, signifying our commitment that the being referred to either has or does not have some kind of moral standing. The language may signal that we have duties toward it as called for by the various moral rules or principles or that it has a particular type of moral standing. In other cases, however, these words can be used in a way conveying no moral implication

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Person (nonmoral definition): Humans (and other beings) who possess some critical physical or mental capacities such as self-awareness or rationality Person (moral definition): Humans (and other beings) who possess full or maximal moral standing FIGURE 6  Two

Definitions of Person

at all. To make matters particularly confusing, sometimes the same word can be used both morally and nonmorally, even by the same speaker and in the same paragraph or sentence (see Figure 6).

Persons Defined as “Those Who Possess Certain Properties” The word person is particularly confusing in this regard. Sometimes the word is used in ways that do not necessarily convey any moral status. Thus, a person can be defined as any self-​aware being. (Other physical or mental characteristics that do not necessarily imply a moral status are also sometimes used, such as possessing an opposing thumb, a human genetic code, or self-​consciousness.) It should be clear that, if person is defined descriptively—​that is, by citing one or more crucial properties such as self-​awareness—​nothing follows about whether such persons have moral status. One always needs some moral assumption to justify a conclusion about moral status. Likewise, those who lack the critical characteristic or characteristics could still have full moral standing. Thus, it could be a correct use of the language to say, “Even though a baby is not a person in the sense of possessing self-​awareness, nevertheless, babies have full moral standing.” Such a statement would simply convey that the speaker based moral standing on something other than that on which he or she bases personhood. Using the language in this way, we can say that there could be human living nonpersons with full moral standing. Likewise, although it would today be an unusual moral view, it would not be a linguistic contradiction to say that some individuals are persons in the sense that they possess self-​awareness and yet they lack full moral standing. (Certain racists might hold such a view, for example.) Those who use the word person in this way are also using it in a nonmoral sense.

Persons Defined as “Those with Full Moral Standing” Making matters more confusing, others use the word person in a way that attributes moral standing to its referents by definition. According to this view, we must

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first determine who has full moral standing (and who does not) and then call all in the first group persons. Hence, one might say, “I believe that embryos have full moral standing and therefore are persons even though they obviously lack self-​awareness.” Or someone might say, “Even though small children possess self-​ awareness, they are nevertheless not persons because they do not have full moral standing.” While this would be an unusual view about the moral status of children, if being a person means nothing more than having moral standing, it is a linguistically comprehensible statement. On the other hand, such a statement would be self-​contradictory if the speaker defined person as meaning “one who possesses self-​awareness.” The bottom line is that some use the term person to identify those with certain physical or mental characteristics (such as self-​awareness), while others use the term to identify those who, by definition, have moral standing regardless of whether they possess any particular mental or physical characteristics.

Confusion Resulting from Shifting from a Nonmoral to a Moral Use of the Term Person The problem arises when someone tries to say something like the following: Late-​term fetuses are not persons because they lack self-​awareness (or self-​ consciousness or ability to reason). But, since lacking personhood means one lacks full moral standing, fetuses can be aborted. Whether it is ethical to abort fetuses is controversial. One cannot validly get to the conclusion that it is ethical by using the reasoning just presented. The speaker first claims that fetuses are not persons using the nonmoral definition—​that is, a definition that is based entirely on descriptive features. He or she wants us to accept as obvious that fetuses do not possess some key nonmoral characteristic such as self-​awareness. Then the speaker shifts to the moral meaning of the term person, claiming that only persons have moral standing. Notice that, as long as one defines person without any reference to moral standing, one has not established that only persons have moral standing. This linguistic sleight of hand seems to suggest a proof that fetuses lack full moral standing, but it is merely a linguistic shift from a nonmoral to a moral definition of persons. What is not established in the two-​sentence statement is that only those with self-​awareness possess full moral standing and that, after all, is what the whole abortion debate is all about. This confusion between the position that persons have moral standing by definition and the position that personhood can be defined based on certain nonmoral characteristics leads to enormous confusion in bioethics debates.The easiest way to eliminate this confusion is simply to exclude the use of personhood

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language, requiring those arguing for one or another position about moral standing to make their claim in a straightforward way. Hence, if one wants to hold that fetuses lack moral standing, it won’t do to claim that they are not persons and that only persons have standing. Or if one wants to hold that they possess moral standing, it won’t do to claim that they are persons and therefore they must have moral standing. Either persons have moral standing by definition, in which case little is established, or persons possess some nonmoral physical or mental characteristics, in which case claiming someone is a person tells us nothing about their moral status without going on to show that these characteristics imply moral standing. Proving that some nonmoral characteristic such as self-​awareness or a unique genetic code is what it takes to establish full moral standing is extremely difficult to do. If such a link could be proved, someone would have done so by now and the abortion, definition of death, and animal rights debates would be over. Apparently, there are no definitive secular proofs of what characteristics establish full moral standing. Instead, we rely on firmly held beliefs—​either secular or religious—​that cannot be proved to others who do not share those beliefs. Nevertheless, virtually everybody accepts the idea that some beings have full moral standing while others do not. The inability to prove what characteristic establishes full moral standing is the reason why we continue to have controversy over the definition of death (when full moral standing ceases), abortion (when full moral standing begins), and the moral standing of nonhuman animals.

Moral and Nonmoral Uses of the Word Human A similar problem arises with the use of the word human. Sometimes those who adopt liberal views on abortion will say that human life does not begin until quickening or the third trimester of gestation or even birth. Similarly, those who are skeptical about the moral standing of anencephalic infants or the persistently vegetative may claim that such beings are not “human.” Clearly, they are not challenging the genetic makeup of such beings; they are merely making claims about their lack of full moral standing. On the other hand, conservatives may respond by pointing out that these beings clearly are “human” since they possess the genetic code of the human species. (They are not cats or dogs.) In making these claims, they are relying on our consensus that the anencephalics or fetuses or persistently vegetative adults in question possess some nonmoral characteristic such as the genetic code of the human that makes them a part of the human species. They trade on the consensus on the characteristics of humans defined nonmorally to attempt to establish that all those with these characteristics are also humans defined as having full moral standing. Once again, it seems that one can only add confusion by sliding from a nonmoral definition to one that establishes moral status by definition. Clearly,

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to be a human in a nonmoral sense establishes nothing one way or another about whether that being also has full moral standing. Doing so requires a belief that all who are humans in the nonmoral sense also possess full moral standing. Or, to point out the liberal’s problem, establishing that one lacks some nonmoral characteristic of humanness, such as self-​consciousness, does not prove one lacks moral standing. The issue in this chapter is how people have attributed moral standing to individuals and, further, how they have attributed what we call full moral standing.

Defining Death It is probably best to start by examining what it means to lose full moral standing, because this avoids some complex issues that pertain to the starting point of full moral standing. A  good case could be made that when there is a quantum change so that full moral standing is lost, we say that the individual has died. That means that certain moral and legal rights that once applied to this individual no longer do. At least for humans, the fight over the definition of death is really a fight over when we should no longer treat someone the way we normally treat living humans. Once an individual is said to have died, our moral (and legal) duties toward that individual are not the same. One cannot “kill” a corpse. Other rights claims are also terminated. The deceased do not, for example, retain rights to their property or to scarce resources. To say that someone has died therefore means, among other things, that we no longer attribute full moral standing to the individual. To be sure, even a corpse is thought to retain some attenuated moral standing. There are things we could do even to a corpse that would be considered immoral. In Chapter  8 we will encounter the principle of avoiding killing. A  critical problem with the principle of avoiding killing—​the idea that it is wrong to kill people—​is that we need to figure out what it means to be dead since, once we consider someone dead, killing that individual is no longer a concern. Up until recently, we all knew who was dead and who was alive; it was straightforward. But in the past half-​century it has become increasingly difficult to decide whether someone is really dead or alive. Remember Jahi McMath, the girl we encountered in Chapter  1 who was declared brain dead in a hospital, despite the objections of her mother and others in her community. If we cannot agree on whether she is dead or alive, we are going to have a real problem figuring out how to handle such a case. We need to determine whether the clinicians who favor cessation of treatment can stop on the grounds that their patient is deceased. Alternatively, they might have to claim that it is acceptable to stop treatment even though the patient is still alive. There are three general positions regarding what it means to be dead (Capron, 2004; President’s Council on Bioethics, 2008; Lamb, 1985; Law Reform Commission of Canada, 1979; President’s Commission for the Study of Ethical

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Somatic-Oriented Irreversible loss of somatic functions including cardiac and respiratory function Whole-Brain-Oriented Irreversible loss of all functions of the entire brain Higher-Brain-Oriented Irreversible loss of higher-brain functions (those responsible for consciousness of other functions considered crucial) FIGURE 7  Three

Definitions of Death

Problems in Medicine and Biomedical and Behavioral Research, 1981;Veatch and Ross, 2016). These are defined in Figure 7.

A Somatic or Circulatory Definition of Death The first, the traditional definition, can be called the somatic definition of death (Jonas, 1974; Shewmon, 2001). According to this view, an individual dies when there is irreversible loss of the body’s capacity to carry on integrated functioning. Usually the focus is on cessation of circulatory and respiratory function, but the body also carries on other complex, integrated functions having to do with such processes as digestion, elimination, reproduction, and maintaining homeostasis.What holders of this view consider essential is that a body is alive as long as it can carry out complex, integrated maintenance of the body as a whole. Thus, we can refer to this view as the somatic integration view. Sometimes (recognizing that circulation is one crucial element in bodily integration) this is simply referred to as a circulatory definition, keeping in mind that we are referring not just to the functioning of the heart, but also to the functioning of the circulatory and respiratory systems as well as other bodily systems. A minority of the President’s Council on Bioethics (2008, p. 90) support this definition of death based on irreversible loss of somatic integration. One can infer from a study published in 2004 that about 14 percent of Ohio citizens held this minority view (Siminoff et al., 2004). The circulatory view of death can be appealing to certain believers in the Abrahamic religions, who view God’s “breath of life” as the critical moment for when life begins, indicating that life ends when breath, or cardiopulmonary function, cannot be restored. It is clearly possible for someone to be alive with a dead heart—​even under this definition of death. As the following case shows, those who favor this definition can recognize that an individual can be alive even if his heart is totally removed and discarded.

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CASE 3 THE MAN LIVING WITHOUT A HEART Some year ago, a dentist named Barney Clarke was a heart patient at the University of Utah, where clinicians were experimenting with artificial hearts. Since he was at death’s door and awaiting a heart transplant, the physicians removed his heart and connected his aorta and veins back up to a Jarvik-​7 artificial heart pump. Barney Clarke lived for four months on that artificial heart. At times he was doing quite well with this machine running next to him, pumping like a heart would pump blood. At times he would sit up in bed, even get out of bed and go for a stroll, pulling this machine along with him on a cart. If he is carrying on a conversation, smiling, and discussing things with those at his side, would anyone, even believers in a definition of death focusing on heart function, consider him dead?

This is an unusual case, but it seems clear that Barney Clarke was not dead during this period. What we mean by a somatic or circulatory death is that an individual has irreversibly lost the key bodily integrative capacities and that these include circulatory and respiratory functions that normally are controlled by the heart. The fact that these functions are being maintained by some artificial device does not make one dead.

The Problem of Irreversibility For an individual to be dead by this definition, the stoppage of bodily integrative function such as circulatory and respiratory function must be irreversible. It is very common but very wrong for clinicians and others to refer to someone who has suffered a cardiac arrest and been successfully resuscitated as having been “clinically dead.” Being dead means irreversible loss of circulatory function. If one suffers a cardiac arrest and then is brought back, that individual was never dead. His or her tissues continued to live. Potentially, we can save that individual. Such individuals have suffered a cardiac arrest and would have died, had we not intervened with CPR, but it is incorrect to say that they were ever dead. Consider the controversy regarding the procuring of infant hearts for transplantation (Boucek et al., 2008).

CASE 4 INFANT HEART TRANSPLANT Although most organ transplants occur after those from whom the organs are taken are pronounced dead based on neurological criteria, some organs are taken after patients are pronounced dead using the traditional circulatory

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criteria. Once the heart stops, the patient is pronounced dead and kidneys and other organs are removed. Historically, hearts are not procured in these cases. The reason is that if a heart can be transplanted and restarted, the one from whom the heart was taken cannot have been dead because the heart has not stopped irreversibly. In 2008 physicians in Denver published an account of their procurement and successful transplant of hearts from three infants who were terminally ill and whose parents had chosen to forgo further life-​support. In each case, the heart of the infant stopped after life-​support was withdrawn; death was pronounced based on loss of heart function; hearts were procured and transplanted. No measurements were made that would suggest loss of brain function. In each case the infants receiving these hearts survived with the transplanted hearts functioning appropriately. Controversy erupted in part because it was questioned whether the infants from whom the hearts were taken were actually dead. They were not pronounced dead based on loss of brain function. The deaths were based on heart function loss. The controversy centered on whether that function was lost irreversibly. Part of the debate centered on whether the physicians had waited long enough to establish that the hearts would not restart themselves in the chests of the original patients. Part of the controversy was over whether one could claim that the hearts had stopped irreversibly when they, in fact, were successfully restarted (in the chests of the infants receiving the transplants). The issue is of considerable substance since, if the infants from whom the hearts were taken were not yet dead (because their hearts had not stopped irreversibly), then the physicians who removed them must have caused the deaths. Homicides must have been committed.

If we understand being dead as signaling a critical change in moral status, it is easy to see why it is important that people must really be dead before their organs are removed.We must follow what is called the “dead donor rule.” Life-​prolonging organs cannot be removed before death.This helps understand why it is important that we insist that people do not die temporarily only to be brought back to life. If they are dead, many behaviors become appropriate that are totally inappropriate for living people, even unconscious people who are not breathing and temporarily have no heartbeat. We can do things like read the person’s will and transfer assets, and, with appropriate permission, remove organs for transplant.The person’s spouse becomes a widow/​widower. None of that happens with a temporary cardiac arrest. For those who do not believe in reincarnation, we only get one death per individual, at least in this world. If death is pronounced in such a case and then the patient’s cardiac and respiratory function returns, we must say we made a mistake. Death was erroneously pronounced—​at least in the eyes of those who hold a somatic or circulatory definition of death.

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Problems with a Somatic Definition of Death There are some serious problems with a somatic definition of death. For one, there are bad consequences in continuing to use the somatic definition. Thousands and thousands of people around the world are awaiting organs for transplant. In the United States alone there are more than 114,000 people on the waiting list for organs as of July 2018. If we wait until somatic integrative functions cease, for the most part those organs are no longer usable in transplants. It would be nice to be able to get these organs to be used for life-​saving transplants. Nevertheless, it is clear we cannot change the definition of death just in order to get wanted organs. In fact, if we wanted to get more organs, we might as well, for example, define all medical students as dead. Then we would get young, healthy organs, rather than waiting for people to have automobile accidents or strokes. It is obvious that we cannot just pick a definition out of thin air simply because it would be useful in saving lives. On the other hand, if there are independent reasons why the somatic-​oriented definition seems wrong, then we should begin the task of determining when we believe people lose their full moral status and die. Many people believe that the somatic or circulatory definition of death is no longer appropriate.To claim that people die when their fluids stop flowing is to elevate blood flow to too lofty a place. Likewise, considering people alive simply because they can digest food or excrete bodily wastes seems demeaning. There is more to human life than mere bodily integration. Instead there is another, more complicated account of what it means to die.

A Whole-​Brain-​Oriented Definition of Death That brings us up to about 1970, when we began talking about what is today sometimes called the whole-​brain-​oriented definition of death based on neurological criteria. An individual dies, according to this view, when there is irreversible cessation of all functions of the entire brain, including the brain stem (Harvard Medical School, 1968; Task Force on Death and Dying, Institute of Society, Ethics and the Life Sciences, 1972; see also President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1981). The majority of the writers of both the 1981 President’s Commission and the 2008 report of the President’s Council on Bioethics held this view. This is a belief that has traditionally been based on the claim that the essence of humans is their ability to integrate bodily functions, and insofar as we believe that the brain is responsible for that integration, one is dead when and only when the brain irreversibly stops functioning. The 2008 report of the President’s Council emphasized the brain’s capacity to make possible human interaction with the surrounding environment. Of course, according to this view, one can lose individual functions and still be alive. It is the integrating capacity or interaction with the environment that counts.

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Whole-​brain death is the current law in most jurisdictions of the world. The exceptions include some Asian countries. Japan only adopted a brain-​oriented definition of death in 1997, limiting it to cases in which organs will be procured for transplant. The resistance of brain-​oriented death pronouncement in Asia can be traced mainly to the fact that it does not square well with traditional Buddhist and Shinto beliefs. Also, the very first organs procured for transplant in Japan, back in the late 1960s, may well have been taken from a patient who was not totally dead, so in Japan there is nervousness about procuring organs.The Japanese do not object to procuring organs from a living patient, for instance taking one kidney from a parent to transplant to a child. It is the problem of pronouncing death based on whole-​brain death that is the difficulty. Several states in the U.S. have considered accommodation for those who, on religious or other grounds, favor a somatic or circulatory definition of death. California and Illinois make limited accommodation. California requires a “reasonably brief ” delay in pronouncing death in order for family or next of kin to gather. Illinois vaguely requires taking into account the patient’s religious beliefs concerning the patient’s time of death. New  York requires that hospitals make “reasonable accommodation” to an individual’s religious or moral objections to the use of the brain death standard.There is one other jurisdiction that still accepts some death pronouncement based on circulatory criteria. That is New Jersey. Policymakers in that state recognize that picking exactly what it means to be dead is not totally a scientific question, that some people could choose one view, some could choose another. In New Jersey, death is based on whole-​brain criteria unless the individual had executed a document expressing a religious objection to the use of the whole-​brain death concept. This was incorporated primarily to accommodate the beliefs of Orthodox Jews, some of whom hold to a circulatory definition. Other groups, including many Native Americans and Japanese, also prefer the more traditional definition. If her entire brain had been destroyed, as two of the neurologists believed it had been, Jahi McMath would have been dead by whole-​brain criteria even though the ventilator was maintaining her heart, respiration, and other bodily integrating functions. Once death has been pronounced, the normal practice would be to stop treatment if it had not already been stopped. Even if one believed that life-​supporting treatments should always be provided for living persons (an issue discussed in Chapter 8), many believe there is no reason to provide it if the patient is deceased. Most people hold that, under usual circumstances, treatment can be stopped on one who is dead even against the wishes of the family. Family members have no right, according to this view, to insist that clinicians continue to ventilate a corpse. A patient on a ventilator determined to be dead using brain criteria does, of course, make for an unusual corpse. On the ventilator, he is respiring and his heart is beating. But if his whole brain is dead, the law in most jurisdictions says that the patient is deceased.

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The Higher-​Brain Definition of Death This brings us to the third definition, sometimes called the higher-​brain-​ oriented definition. Suppose a patient were permanently unconscious, with most brain functions gone, but limited reflexes remained in the brain stem. He would not be dead by whole-​brain criteria.There are also cases in which evidence suggests certain hormonal functions of the pituitary or hypothalamic portions of the brain may be retained. According to the whole-​brain formulation, every last function must be gone. People have begun to say that perhaps there are some brain functions that are not absolutely essential to being considered alive. In that case, we might pronounce somebody dead if their “higher functions” were permanently lost. For instance, if the cerebrum is gone, but the brain stem remains so that brain stem reflexes are present, one might, under a higher-​brain definition of death, claim somebody is dead. An individual dies, according to this view, when there is an irreversible loss of higher-​brain functions. Defining exactly which functions are critical is controversial. Some have claimed that the critical function is the function of the cerebrum, but it is theoretically possible for some motor functions to remain in the cerebrum even though all sensory function is lost. Most defenders of the higher-​brain formulations consider some sensory function to be critical. Some of them simply equate death to an irreversible loss of consciousness. Anybody who is permanently unconscious, according to this newer view, would be considered dead. Since considering someone dead is, in reality, claiming that they have undergone a major change in their moral status, many behaviors appropriate with regard to dead people would become acceptable at this point. The higher-​ brain definition of death is not yet legal anywhere in the world. But it is an idea that is debated increasingly. A number of philosophers and neurologists are beginning to endorse this idea. Based on the 2004 Ohio study, it appears that over half (57 percent) of Ohio citizens would consider some people who retain some brain activity to be dead (Siminoff et al., 2004). Somebody will eventually propose that it be the legal definition of death. Were it the legal definition of death, Jahi McMath would have been considered dead from the moment she became irreversibly unconscious. Nancy Cruzan and Karen Quinlan (women left in a vegetative state from accidents, whose families led battles for the right to forgo life support) or Terri Schiavo (the Florida woman in a permanent vegetative state whose family aired a very public disagreement about withdrawing nutrition) would be dead by this higher-​brain definition even though they were legally alive according to the present whole-​brain definition.

Definitions and Moral Standing Almost everyone holds some version of one of these three major definitions of death. They believe that once one has irreversibly lost the critical function—​circulatory,

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whole-​brain, or higher-​brain—​a major moral shift has taken place as well as a biological one. They believe that the individual no longer has the full moral standing that he or she once possessed. They hold that many behaviors, such as procuring organs that maintain body functions, become acceptable that are not appropriate for individuals considered living. They may have lesser moral standing, but full standing no longer exists.

Abortion Symmetry between Definition of Death and Abortion If calling someone dead is, in fact, a social symbol that we are attributing to a major moral status change, the debate over the definition of death is really a great moral debate. Moreover, it may have direct relevance to the even more controversial debate over abortion. Whatever factor signals the end of full moral standing would seem to be relevant to the question of when full moral standing begins. It is possible we can do things before full moral standing is attributed that we will not be able to do later in a human’s life.We might, for example, be able to trade off interests, do laboratory manipulations, perhaps even end biological life. Manipulation of sperm and egg cells are often believed to be less troublesome morally than manipulating a late-​term fetus or postnatal infant. It is important to know why that is so. It must be that, no matter how we attribute moral status to sperm and egg cells, we view them as having a moral standing that is different from that of the late-​term fetus or postnatal infant. If we can identify what is responsible for this perceived shift in moral status, perhaps we can understand better when full moral standing accrues. Can we use the criterion for end of life as a signal of when full moral standing begins? Some people think this is so. Let us see what the implications of each of the three definitions of death might be for the issue of the moral standing of fetuses. (For a range of well-​developed positions on abortion, see Beckwith, 2007; Little, 2008; Steinbock, 2011; Watson, 2018; Tooley et al., 2009; Hursthouse, 1991; Thomson, 1971; Marquis, 1989; Warren, 1973; Callahan, 1970; Dworkin, 1994; Feinberg, 1973; Noonan, 1970.) First, the higher-​brain death formulation implies that full moral standing accrues only when the requisite higher functions appear. For many holders of this position that means the capacity for some level of mental function or consciousness. This is late in fetal development, perhaps about 24 weeks of gestation. Holders of this view would accept a lesser moral status for fetuses prior to that time, but they would not attribute the same moral status that is assigned to postnatal humans. This concept is probably what underlies the most liberal view on abortion. Second, the whole-​brain death definition implies that full moral standing accrues when capacity for neurological bodily integration or interaction with

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the environment develops. This is earlier, perhaps in about the eighth to twelfth week of gestation. Those who believe that full moral standing accrues at the point at which neurological integrating capacity appears would probably accept abortion up to this point (although many women, especially those who take some form of hormonal contraception, are unaware of their pregnancy at early stages). The exact cutoff would depend on exactly what they understand integration or interaction to mean. They would, thus, be moderates in the abortion debate. The circulatory definition of death implies that full moral standing accrues when capacity for circulating blood appears. That, in turn, depends on exactly we mean by capacity to circulate blood. Full pumping of blood occurs much later, perhaps at a time similar to the occurrence of neurological integrating capacity. Cardiac muscle contraction occurs quite early in fetal development, however (so early that many women, especially those on hormonal contraception, do not yet know that they are pregnant at the time of the first fetal heartbeat). So do some other somatic integrating functions such as digestion and elimination. If one includes these functions as indicators of full moral status, a more conservative position on abortion is likely. Each definition of death has a corresponding notion of when full moral standing begins and implications for the moral status of fetuses before that time. None of this implies that a fetus has no moral status before the emergence of the critical function; just as a corpse commands respect even after the critical function ceases, so even liberals on abortion may recognize that early fetuses are not merely meaningless pieces of tissue. There are moral limits on what can be done to a corpse. But those limits are not as constraining as for a being with full moral status. In the case of a dead body, we may transplant organs, do research solely for the benefit of others, perform a respectful autopsy, and so on. So, likewise, those who identify a point later in fetal development at which full moral standing begins may still believe fetuses at an earlier stage of development have some intermediate moral status. Notice that there is no scientific way to choose among these functions to determine which function is critical for maximal moral standing. This necessarily requires a religious or philosophical judgment. Many in Western society have chosen the whole-​brain function as critical in the definition of death. Should they also use that as the critical point in deciding when in fetal development full moral standing accrues? Should those who accept a higher-​brain definition of death likewise accept the beginning of these functions as the beginning of full moral standing?

Possible Basis for a Breakdown in the Symmetry It is striking that none of these positions has anything directly to do with the fixing of the genetic code, which occurs soon after conception. None seems to

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imply full moral standing at the moment of conception. How do conservatives on abortion, those who would oppose all abortion from the beginning, defend their position? Thus far we have assumed it is the actual capacity to perform some function that is morally critical. That function might be consciousness, neurological integrating capacity, or circulatory function, but it is the ability to perform the function that has been taken to be decisive morally. But some people hold that it is the potential for these functions that is morally critical. They say that once the genetic code for the human being is determined, the eventual development of the critical function is determined. Barring some injury or other untoward event, the capacity will eventually emerge. In death, one loses potential when one loses capacity irreversibility. At the beginning of life, the potential is present long before actual capacity. It is present at conception or soon thereafter. If it is potential for an individual to develop higher-​brain, whole-​brain, or circulatory function that is morally critical, then full moral standing would arise once that potential has been established. Liberal critics may claim at this point that potential is present even before conception. The genes are present in sperm and egg, and the potential exists before conception. This claim would appear to give egg and sperm cells full standing, a position almost no one finds plausible. But defenders of the more conservative position claim that what is critical is a potential for these functions occurring in a unique and individual way. This occurs only when the genetic code is determined, at least insofar as these functions are determined genetically. If one believes unique potential is what is morally critical to establishing full moral standing, then this moment when the genetic code is fixed becomes critical. A more moderate defender of the potentiality position may recognize that there is at least the possibility for changes in the genetic makeup of an individual for several days after conception (Hellegers, 1970; McCormick, 1991), perhaps up to the point at which twinning can take place. Regardless of when they believe the genetic code is fixed, their ethic is shaped by the belief that full moral standing is contingent on the establishment of the genetically unique individual. This would lead to attributing full moral standing at or near conception no matter which function is critical. There is one possible exception. If the embryo or fetus has a major defect so that we could determine it could never develop the critical function, then it lacks the potential and would never attain the full moral standing we are discussing. If a fetus is diagnosed as an anencephalic, then holders of a higher-​brain view would conclude that the fetus never has the potential for the development of consciousness. Termination of the pregnancy would theoretically be acceptable even for one who was unalterably opposed to abortion of all “living” fetuses. This decision would, of course, require reliance on the higher-​brain view and the unique potential view simultaneously. On the other hand, holders of the whole-​brain view of which function is critical would still view the anencephalic fetus as having full moral standing. It could not licitly be killed if possessing full moral standing

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precludes killing.They would, however, seem logically committed to the view that a fetus so genetically abnormal that had no potential for development of any brain function (cerebral or lower) would lack full moral standing. Likewise, the holder of the circulatory or somatic integration view would be committed to the view that a fetus with no potential for any of these functions would lack full moral standing. For more on the bioethical debates on abortion, see Chapter 11.

Human Stem Cells One of the most exciting and controversial developments in recent biology is the emergence of human stem cells as a strategy for medical research and therapy (Gruen et al., 2007; President’s Council on Bioethics, 2008; Monroe et al., 2008; National Bioethics Advisory Commission, 1999; Thompson, 2013; King and Perrin, 2014; Dresser, 2010). Stem cells are undifferentiated cells occurring in multicellular organisms that have the potential to develop into specialized cells of various types.They occur in embryos and in adult organisms and have proven very useful in various kinds of research. They have the potential to be useful in therapy for such diverse conditions as Alzheimer’s disease, Parkinson’s, strokes, myocardial infarction, and diabetes.

Stem Cells and Moral Standing Stem cells raise two kinds of moral issues. One arises potentially with both embryonic and adult stem cells. Some people consider that interventions to manipulate the core genetic and cellular structure of humans are too much tampering with nature. They think that generation of replacement cells or organs or conducting research at this level is treading where humans ought not to tread. The second issue is more immediate. The production and growth of organisms from stem cells raises issues related to moral standing. That is our focus here. The moral problem arises first in the obtaining of embryonic stem cells. Researchers are also developing the capacity to obtain stem cells from adults (President’s Council on Bioethics, 2005), but some insist that embryonic sources are still needed for at least some uses. These come from the inner cell mass of the embryo at the morula or blastocyst stage. This involves destruction of an embryo and thereby the destroying of a human organism (the immoral killing of a human life) according to the holders of more conservative views on moral standing. Thus, anyone who is morally opposed to all abortions (even at the earliest stage of embryonic development) would be likely to oppose the destruction of the embryo necessary to obtain embryonic stem cells. Controversy over stem cells is, thus, in part an extension of the controversy over abortion. A somewhat different issue arises with some efforts to develop stem cells into more differentiated tissues for purposes of research or therapy. The growth of stem cells in some ways produces a new organism, one with the genetic makeup of the original stem cell. Whether from adult or a newly

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formed embryo, some might view the new organism as having enough human characteristics that rights—​including potentially the right to life—​might be attributed to it.

Stem Cells and Cooperation with Evil The emergence of stem cells produces a new set of issues for those who would attribute full standing or even high levels of standing less than full to the embryos destroyed in the production of embryonic stem cells. Often the source of these embryos is the in vitro fertilization clinics that intentionally produce human embryos for purposes of assisted reproduction (see Chapter 11 for more on this technology). Since obtaining the egg cells that are fertilized in these clinics is expensive and burdensome, it is typical that many are procured at the same time. Select embryos are fertilized, and extras not implanted immediately are stored in case the first efforts fail. This can result in extra embryos not used by the couple that created them. Assuming that the couple does not wish to donate those extra fertilized eggs for another person or couple to “adopt” prenatally, these unused embryos would simply be discarded. If, however, they are to be discarded (and thus killed), some might ask whether it would be any more immoral to destroy them in the process of obtaining stem cells and thus creating the possibility that something good could emerge. Because obtaining of stem cells involves destruction of embryos, those who would consider the destruction of unwanted embryos immoral generally would also oppose the process of obtaining stem cells. Some people, however, might conclude that, as long as the embryos are going to be destroyed anyway, no further wrong is done if they are used as a source of stem cells. Even those who would not themselves be a party to such stem cell procurement may decide that, once the cells have been obtained, it is morally tolerable to make use of cells of a cell line so created. Critics of the use of embryonic stem cells may argue that the possibility that some good could come from the destruction of the embryos will necessarily add a benign aura to the moral wrong of the original destruction and thus change the moral calculation about obtaining the cells. They may see this as condoning the moral wrong. The one who is using the stem cells so obtained is sometimes said to be “cooperating” in the evil of destroying the embryo.There remains some controversy among those who oppose the destruction of embryos whether it would be unethical to participate in research on cell lines or in therapies generated by the use of such cell lines. Even if the one who is conducting the research had nothing to do with the embryo destruction and was far removed from such activity, there are those who would argue that benefiting down the line would constitute a kind of cooperation that would be unacceptable. During the administration of George W. Bush, a federal prohibition existed on the use of government funds to create new lines of stem cells although certain cell

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lines already in existence could still be used in research with federal funding. The Obama administration lifted that ban, permitting once again, with certain limits, the production of new cell lines with the use of government funds (Macklin, 2000; Meilaender, 2001). In 2018, the Trump administration announced it would initiate a review of all research involving fetal tissue, possibly leading again to restrictions on embryonic stem cell research in the U.S.

The Moral Status of Nonhuman Animals This discussion of moral standing leads directly into another controversial issue in medicine: the moral status of nonhuman animals (Council of Europe, 2006; DeGrazia, 2002; Orlans, 1993; Palmer, 2008; Regan and Singer, 1989; Singer, 1975; Sunstein and Nussbaum, 2004). If clinicians or scientists do research or educational projects using nonhuman animals, they must confront the question of the moral limits of their use. Radical protestors destroy labs and assault medical personnel fighting over the moral status of nonhuman animals. In the United States, federal regulations control animal use carefully (U.S. National Institutes of Health, 1985, 1986; Animal Welfare Act, 1966). The Institutional Animal Care and Use Committee must approve animal research just as institutional review boards must approve research on humans. The recognized status of chimpanzees has been elevated significantly in the U.S.; as of 2015, the National Institutes of Health announced that the federal government would no longer support research on chimpanzees, and they formally retired their small colony of chimps. At the same time, research on nonhuman primates has increased in recent years (Grimm, 2018). Do any animals have the full moral standing we assign to humans, and what would that mean if they did? Western culture has viewed nonhuman animals as subordinate to humans. They are used for food, medicine, religious ritual, and even sport. This status is reflected in the Judeo-​Christian creation story in which humans are to have dominion over the earth and subdue it. This leads to a moral subordination of nonhuman animals. They are believed to deserve protection from needless suffering (with some debate about what counts as needless), but the interests of humans take precedence. Xenografts (transplantation of organs across species lines) are generally accepted; in some forms of Judaism they are even imperative.The radical separation between the status of humans and that of animals is seen in the zealous controversy over creation versus evolution. Creationists insist that God has a special relation with humans, who did not merely evolve from other animals. By contrast, Eastern thought often gives a higher moral status to animals than most Westerners do, and animal suffering causes greater concern. For example, the Hindu doctrine of ahimsa (avoidance of suffering) applies to all species. Jains

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believe no animal should be killed. Their priests actually sweep the ground ahead of them before they walk to brush insects out of the way. Western secular thinking has traditionally followed its religious thought in subordinating the moral status of nonhuman animals, but recently some have taken a different position. Western secular thought is sometimes utilitarian. The focus is exclusively on the amount of good and harm done by an action. Typically, utilitarians treat pain as an evil and pleasure as a good, regardless of the species. An identical kind and quantity of pain counts the same morally, regardless of whether it occurs in a human or a nonhuman. Utilitarians claim that anyone who treats individuals differently solely on the basis of species is guilty of speciesism (Singer, 1975). They see it as comparable to racism or sexism or ageism. Two current views about the moral status of nonhumans support concern about animals. One view, the rights-​based defense of the moral status of animals, held by philosophers such as Tom Regan (1989), holds that sentient animals have a sacredness or right to life just the way humans do. The argument is not driven by concern for consequences. Animals have rights in virtue of their capacities, including a right to live. The second position, held by philosophers such as Ray Frey (1989), could be called the “degrees of pleasure and pain” view. It reflects a utilitarian perspective. According to Frey, two animals of different species that experience the same kind and quantity of pain have equal moral claim to be relieved of that pain. But he emphasizes that humans and rats may experience pain differently. Although a human and a nonhuman who experience identical kind and quantity of pain would deserve to be treated equally, if they experience it differently then their moral claim would differ. Frey’s view suggests a puzzle: If a chimpanzee has developed mentally to the point that his experiences are richer than those of a severely cognitively impaired human, what would justify using the nonhuman, rather than the human, for research or xenograft or food? How could one defend a priority for the human in such a case? Is species itself a morally defensible dividing line? That is, is speciesism acceptable after all? Or are we prepared to grant to nonhuman animals which have the functional capacities of severely impaired humans all the moral status we grant humans? While some bioethicists emphasize this comparison with animals and cognitively impaired humans, others argue that the comparison is fundamentally flawed (Carlson and Kittay 2009).

Key Concepts Circulatory Definition of Death The view that an individual dies when there is irreversible cessation of all cardiac and respiratory functions. If the functions are expanded to include other bodily integrating functions such as digestion, elimination, maintenance of homeostasis, and so on, then this is sometimes referred to as the somatic integrating definition of death.

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Higher-​ Brain-​ Oriented Definition of Death The view that an individual dies when there is irreversible cessation of all “higher” functions of the brain, often believed to be functions related to consciousness and feelings.The continued functionality of the brain stem is insufficient for life. Moral Standing or Moral Status The status of humans (and other beings) who have moral claims on others or to whom others have duties. Person/​ Personhood (Moral Definition) Humans (and other beings) who possess full or maximal moral standing. Person/​ Personhood (Nonmoral Definition) Humans (and other beings) who possess some critical physical or mental capacity such as self-​consciousness, self-​awareness, or rationality. Rights-​based Defense of the Moral Status of Animals Sentient animals have a sacredness or right to life just as humans do. The argument is not driven by concern for consequences but instead focuses on animals’ capacities and interests. Speciesism The view in the debate about the moral status of animals that holds that species itself is a morally relevant factor in deciding moral standing, usually in the form of holding that humans, just by being humans, have greater moral standing than nonhuman animals, even those capable of having similar quantity and quality of experience. Stem Cells Cells found in multicellular organisms that are unspecialized and are capable of renewing themselves. Under certain conditions they can become tissue-​or organ-​specific cells. Utilitarian Defense of the Moral Status of Animals (the “Degrees of Pleasure and Pain” View) Animals of different species who experience the same kind and quantity of pleasure or pain have equal moral claim to have the pleasure promoted or to be relieved of that pain. Whole-​Brain-​Oriented Definition of Death The view that an individual dies when there is irreversible cessation of all functions of the entire brain, including the brain stem.

Bibliography The Definition of Death Boucek, Mark M., Christine Mashburn, Susan M. Dunn, Rebecca Frizell, Leah Edwards, Biagio Pietra, and David Campbell. “Pediatric Heart Transplantation after Declaration of Cardiocirculatory Death.” New England Journal of Medicine, 359 (2008): 709–​714.

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Capron, Alexander Morgan. “Death, Definition and Determination of:  II. Legal Issues in Pronouncing Death.” In Encyclopedia of Bioethics, 3rd ed., ed. Stephen G. Post. New York: Macmillan Reference USA, Thomson/​Gale, 2004, pp. 608–​615. Gervais, Karen G. “Death, Definition and Determination of:  III. Philosophical and Theological Perspectives.” In Encyclopedia of Bioethics, 3rd ed., ed. Stephen G. Post. New York: Macmillan Reference USA, Thomson/​Gale, 2004, pp. 615–​626. Harvard Medical School. “A Definition of Irreversible Coma:  Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.” Journal of the American Medical Association, 205 (1968): 337–​340. Jonas, Hans. “Against the Stream:  Comments on the Definition and Redefinition of Death.” In Philosophical Essays: From Ancient Creed to Technological Man. Englewood Cliffs, NJ: Prentice-​Hall, Inc., 1974, pp. 132–​140. Lamb, David. Death, Brain Death and Ethics. Albany, NY:  State University of New  York Press, 1985. Law Reform Commission of Canada. Criteria for the Determination of Death. Ottawa: Ministry of Supply and Services, 1979. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Defining Death: Medical, Legal and Ethical Issues in the Definition of Death. Washington, DC: U.S. Government Printing Office, 1981. President’s Council on Bioethics. Controversies in the Determination of Death:  A White Paper by the President’s Council on Bioethics. Washington, DC:  President’s Council on Bioethics, 2008. Shewmon, D. Alan. “The Brain and Somatic Integration:  Insights into the Standard Biological Rationale for Equating ‘Brain Death’ with Death.” Journal of Medicine and Philosophy, 26, No. 5 (2001): 457–​478. Siminoff, Laura A., Chris Burant, and Stuart J. Youngner. “Death and Organ Procurement:  Public Beliefs and Attitudes.” Social Science Medicine, 59, No. 11 (2004): 2325–​2334. Task Force on Death and Dying, Institute of Society, Ethics and the Life Sciences. “Refinements in Criteria for the Determination of Death: An Appraisal.” Journal of the American Medical Association, 221 (1972): 48–​53. Veatch, Robert M. “The Whole-​ Brain-​ Oriented Concept of Death:  An Outmoded Philosophical Formulation.” Journal of Thanatology, 3 (1975): 13–​30. Veatch, Robert M., and Lainie F. Ross. Defining Death:  The Case for Choice. Washington, DC: Georgetown University Press, 2016. Youngner, Stuart J., Robert M. Arnold, and Renie Schapiro, eds. The Definition of Death: Contemporary Controversies. Baltimore, MD: Johns Hopkins University Press, 1999.

Abortion Beckwith, Francis J. Defending Life:  A Moral and Legal Case Against Abortion Choice. Cambridge and New York: Cambridge University Press, 2007. Callahan, Daniel. Abortion: Law, Choice and Morality. New York: Macmillan, 1970. DeGrazia, David. “Moral Status as a Matter of Degree?” The Southern Journal of Philosophy 46 (2008): 181–​198. Dworkin, Ronald. Life’s Dominion: An Argument about Abortion, Euthanasia, and Individual Freedom. New York: Vintage Books, 1994. Feinberg, Joel, ed. The Problem of Abortion. Belmont, CA: Wadsworth, 1973.

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Hellegers, A. “Fetal Development.” Theological Studies 31 (1970): 3–​9. Hursthouse, Rosalind. “Virtue Theory and Abortion.” Philosophy & Public Affairs 20, No. 3 (1991): 223–​246. Little, Margaret Olivia. “Abortion and the Margins of Personhood.” Rutgers Law Journal 39 (2008): 331–​348. Marquis, D. “Why Abortion is Immoral.” The Journal of Philosophy 86 (1989): 183–​202. McCormick, Richard A. “Who or What Is the Preembryo?” Kennedy Institute of Ethics Journal, 1 (1991): 1–​15. Noonan, John T. The Morality of Abortion:  Legal and Historical Perspectives. Cambridge, MA: Harvard University Press, 1970. Steinbock, Bonnie. Life Before Birth: The Moral and Legal Status of Embryos and Fetuses, 2nd ed. New York: Oxford University Press, 2011. Thomson, Judith J. “A Defense of Abortion.” Philosophy and Public Affairs 1, No. 1 (1971): 47–​66. Tooley, Michael, Celia Wolf-​Devine, Philip E. Devine, and Alison M. Jaggar. Abortion: Three Perspectives. New York: Oxford University Press, 2009. Warren, Mary Anne. “On the Moral and Legal Status of Abortion.” The Monist 57, No. 1 (1973): 43–​61. Warren, Mary Anne. Moral Status:  Obligations to Persons and Other Living Things. New York: Oxford University Press, 1998. Watson, Katie. Scarlet A: The Ethics, Law, & Politics of Ordinary Abortion. New York: Oxford University Press, 2018.

Stem Cells Dresser, Rebecca. “Stem Cell Research as Innovation: Expanding the Ethical and Policy Conversation.” Journal of Law, Medicine & Ethics 38, No. 2 (2010): 332–​341. Gruen, Lori, Laura Grabel, and Peter Singer, eds. Stem Cell Research:  The Ethical Issues. Malden, MA: Blackwell Publishing, 2007. King, Nancy M.P., and Jacob Perrin. “Ethical Issues in Stem Cell Research and Therapy.” Stem Cell Research & Therapy 5 (2014): 85–​90. Lavazza, Andrea, and Marcello Massimini. “Cerebral Organoids:  Ethical Issues and Consciousness Assessment.” Journal of Medical Ethics 44 (2018): 606–​610. Lo, Bernard, and Lindsay Parham. “Ethical Issues in Stem Cell Research.” Endocrine Reviews 30, No. 3 (2009): 204–​213. Macklin, Ruth. “Ethics, Politics, and Human Embryo Stem Cell Research.” Women’s Health Issues 10, No. 3 (2000): 111–​115. Marquis, Don. “Stem Cell Research:  The Failure of Bioethics.” Free Inquiry 23, No. 1 (2002): 40–​44. McGee, Glenn, and Arthur L. Caplan. “The Ethics and Politics of Small Sacrifices in Stem Cell Research.” Kennedy Institute of Ethics Journal 9, No. 2 (1999): 151–​158. McMahan, Jeff. “Killing Embryos for Stem Cell Research.” Metaphilosophy 38, No. 2–​3 (2007): 170–​189. Meilaender, Gilbert. “The Point of a Ban. Or, How to Think about Stem Cell Research.” Hastings Center Report 31, No. 1 (2001): 9–​16. Monroe, Kristin Renwick, Ronald B. Miller, and Jerome Tobis, eds. Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues. Berkeley, CA: University of California Press, 2008.

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National Bioethics Advisory Commission. Ethical Issues in Human Stem Cell Research Volume I: Report and Recommendations of the National Bioethics Advisory Commission. Rockville, MD: National Bioethics Advisory Commission, 1999. President’s Council on Bioethics. Monitoring Stem Cell Research: A Report of the President’s Council on Bioethics. Washington, DC: President’s Council on Bioethics, 2008. Robertson, John A. “Human Embryonic Stem Cell Research:  Ethical and Legal Issues.” Nature Reviews Genetics 2 (2001): 74–​78. Sagan, Agata, and Peter Singer. “The Moral Status of Stem Cells.” Metaphilosophy 38, No. 2–​3 (2007): 264–​284 Thompson, Charis. Good Science: The Ethical Choreography of Stem Cell Research. Cambridge, MA: MIT Press, 2013.

Moral Standing of Nonhuman Animals Anderson, Elizabeth. “Animal Rights and the Values of Nonhuman Life.” In Animal Rights:  Current Debates and New Directions, ed. Cass Sunstein and Martha Nussbaum. New York: Oxford University Press, 2004, pp. 277–​298. Andrews, Kristin, Gary Comstock, G.K.D. Crozier, Sue Donaldson, Andrew Fenton, Tyler M. John, Syd M. Johnson, Robert C. Jones, Will Kymlicka, Letitia Meynell, Nathan Nobis, David Pena-​Guzman, and Jeff Sebo. Chimpanzee Rights: The Philosophers’ Brief. New York: Routledge, 2019. Beauchamp, Tom L., and R.G. Frey, eds. The Oxford Handbook of Animal Ethics. New York: Oxford University Press, 2011. Carlson, Licia, and Eva Feder Kittay.“Introduction: Rethinking Philosophical Presumptions in Light of Cognitive Disability.” Metaphilosophy 40 (2009): 307–​330. Collins, Francis S. “NIH Will No Longer Support Biomedical Research on Chimpanzees.” National Institutes of Health, November 17, 2015. www.nih.gov/​about-​nih/​who-​ we-​are/​nih-​director/​statements/​nih-​will-​no-​longer-​support-​biomedical-​research-​ chimpanzees, accessed 18 August 2019. Council of Europe. Animal Welfare. Strasbourg: Council of Europe, 2006. DeGrazia, David. Animal Rights: A Very Short Introduction. Oxford and New York: Oxford University Press, 2002. Frey, R.G. “The Case Against Animal Rights.” In Animal Rights and Human Obligations, 2nd ed., ed. Tom Regan and Peter Singer. Englewood Cliffs, NJ: Prentice-Hall, 1989, pp. 115–​118. Grimm, David. “Record Number of Monkeys Being Used in U.S. Research.” Science, November 2, 2018.www.sciencemag.org/​news/​2018/​11/​record-​number-​monkeys-​ being-​used-​us-​research, accessed 18 August 2019. National Research Council (United States), Commission on Life Sciences, Institute of Animal Resources. Guide for the Care and Use of Laboratory Animals. Washington, DC: National Academy Press, 1996. Orlans, F. Barbara. In the Name of Science:  Issues in Responsible Animal Experimentation. New York: Oxford University Press, 1993. Orlans, F. Barbara, Tom L. Beauchamp, Rebecca Dresser, David B. Morton, and John P. Gluck. The Human Use of Animals: Case Studies in Ethical Choice. New York: Oxford University Press, 1998. Palmer, Clare, ed. Animal Rights. Aldershot, Hampshire and Burlington,VT: Ashgate, 2008.

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President’s Council on Bioethics. Alternative Sources of Human Pluripotent Stem Cells. Washington, DC: President’s Council on Bioethics, 2005. Regan, Tom. The Case for Animal Rights. Berkeley, CA: University of California Press, 2004. Regan, Tom. “The Case for Animal Rights.” In Animal Rights and Human Obligation, 2nd ed., ed. Tom Regan and Peter Singer. Englewood Cliffs, NJ: Prentice-Hall, 1989, pp. 105–​114. Regan,Tom, and Peter Singer, eds. Animal Rights and Human Obligations, 2nd ed. Englewood Cliffs, NJ: Prentice-Hall, 1989. Singer, Peter. Animal Liberation: A New Ethics for Our Treatment of Animals. New York: Avon Books, 1975. Sunstein, Cass R., and Martha C. Nussbaum, eds. Animal Rights: Current Debates and New Directions. Oxford and New York: Oxford University Press, 2004. U.S. National Institutes of Health. “Laboratory Animal Welfare:  Public Health Service Policy on Humane Care and Use of Laboratory Animals by Awardee Institutions; Notice.” Federal Register, 50, No. 90 (1985): 19584–​19585. U.S. National Institutes of Health. Public Health Service Policy on Humane Care and Use of Laboratory Animals. Bethesda, MD: Office for Protection from Research Risks, 1986.

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4 PRINCIPLE-​BASED APPROACHES TO MORAL PROBLEMS IN BIOETHICS

LEARNING OBJECTIVES FOR THIS CHAPTER ( 1) Describe the principle-​based approach for analyzing bioethical problems. (2) Identify and compare different lists of principles. (3) Describe methods for resolving conflict among principles.

Once we have determined who has moral standing—​who has moral claims and to whom moral duties are owed—​we need to establish how to systematically approach moral problems in bioethics. There are several standard approaches that bioethicists have used over the years. We can consider the use of principles, which will be the focus of this chapter. Alternative methods have gained attention recently including virtues, casuistry and narrative ethics, feminist approaches, and care ethics. These approaches will be the focus of Chapter 5.

Principle-​based Approaches: Principlism The most dominant approach to attempting to resolve ethical problems over the past generation has been called principlism. It attempts to identify a short list of very abstract conditions that will make an action or a practice morally right. The belief is that certain features of human behavior make them morally right. If we can generate a list of these features, we will be able to use the list to evaluate behaviors by individuals such as physicians, nurses, and pharmacists as well as patients, parents, politicians, and administrators. We can also use the list to evaluate social institutions such as hospitals, corporations, and governments.

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A great deal of work has gone into trying to come up with a list of these features. They are usually called principles. In 1974, The National Research Act created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1978), which was charged with developing ethical principles that would guide oversight of research that involved human subjects.The resulting collaborative document, the Belmont Report, offered three basic principles:  respect for persons, beneficence, and justice. Bioethicists Tom Beauchamp and James Childress (2013, first edition 1979)  have the most influential account of principlism in their text, Principles of Biomedical Ethics.They argue that there are four basic principles: respect for autonomy, beneficence, nonmaleficence, and justice. Thus, they differ from the Belmont Report (of which Beauchamp was a primary author) by limiting “respect for persons” to “respect for autonomy” and by separating Belmont’s “beneficence” into two principles. While the principle of beneficence refers to positive instances of producing benefit, the principle of nonmaleficence distinctly refers to not doing harm. In distinguishing positive and negative aspects, they follow a long line of philosophers. Their four principles have historical links to the work of British philosopher, W.D. Ross (1939). The goal with any of these approaches is to develop an exhaustive list of all the criteria that will tend to make an action morally right. As an approach, principlism is supposed to cut across cultures, traditions, and other philosophical commitments; in other words, no matter what else someone’s beliefs are about morality, the basic principles are supposed to serve effectively as “guide posts” for ethical reasoning. There has been considerable (but not complete) convergence among those who have attempted to make up such lists. Some have tried to identify a single principle such as that the action produces good consequences or that it respects the autonomy of others. Most who have tried to come up with such lists, however, believe that more than one characteristic of an action might make it morally right. Not everyone agrees on the same list. Some might leave off a characteristic entirely.

The List of Principles

CASE 5 WHEN A PATIENT WANTS TO STAY IN THE HOSPITAL Mr. Robertson is in the hospital because of complications related to cancer. He received some chemotherapy soon after his diagnosis to help him live longer, but his condition is terminal. Because of the type of cancer he has, he continually needs blood transfusions to live. His physician, Dr. Sims, thinks that it would be best for Mr. Robertson’s medical care to be focused on

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comfort only, and she recommends that Mr. Robertson no longer receive transfusions or tests, and she suggests that his code status be changed to “Do Not Resuscitate.” In response, Mr. Robertson turns his back on Dr.  Sims and refuses to speak to her. Dr. Sims decides not to press the issue and continues to provide more treatments to attempt to extend his life. As the weeks pass, more physicians, nurses, and chaplains try to have an end-​of-​life conversation with Mr. Robertson, but he either refuses to discuss it, yells that he wants “the doctors to do their job and keep him alive,” or throws his food on the floor in protest. The social worker learns that Mr. Robertson lives at home alone, and he sometimes cannot pay for running water or electricity. He has no identifiable family or friends. When the social worker tries to talk to the patient about other facilities, Mr. Robertson makes it clear that he will not consent to any transfer because “nursing homes just leave you to die.” His new physician, Dr. Lemmons, believes that Mr. Robertson is wasting resources with the continual blood transfusions, and he thinks the healthcare team should not allow this patient to stay at an acute care hospital when he is better suited for hospice care.

To analyze this case we can make use of a principle-​based approach. We might divide our list of principles into two kinds: consequence-​maximizing principles and duty-​based principles. Two of the principles focus on maximizing net good consequences: beneficence (the idea that an action is right insofar as it produces good consequences) and nonmaleficence (the idea that an action is right insofar as it avoids harmful ones). Bioethics problems involving the production of good consequences and the avoiding of harmful ones will be taken up in Chapter 6. Some people only accept consequence-​maximizing principles and are called consequentialists or sometimes utilitarians. They can disagree among themselves over what counts as a good consequence (for example, some utilitarians focus on happiness, others have a more expansive list of benefits that they count) as well as over whether nonmaleficence and beneficence are simply the positive and negative sides of the same coin or whether they are distinct. Some, for example, claim that the duty to avoid harming (nonmaleficence) is a more weighty duty and should be given extra consideration. For those who evaluate moral problems on the basis of consequences, the level of certainty regarding the empirical facts will make a substantial difference to what ends up being the right thing to do. For Mr. Robertson’s case, we could inquire what the negative consequences would foreseeably be for Mr. Robertson, any other patients, and his healthcare team if he were permitted to stay in the hospital for weeks or even months longer. In healthcare ethics, some insist on considering only the consequences for the patient. The Hippocratic Oath takes this position and therefore theories that focus only on

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the outcomes for the individual patient are sometimes called “Hippocratic.” The individual consequences for Mr. Robertson might be severe if he went home, but his staying in the hospital might have both good and bad consequences as well. Other consequentialists insist on considering the consequences for all persons. If Mr. Robertson stays in the hospital this would mean lost resources for other patients and a distress for staff. Moreover, there are disagreements over whether consequences are subjective or objective. Many would hold that the consequences for a patient being in the hospital or at home vary depending on subjective factors unique to the individual patient, making it difficult for the healthcare professionals to know exactly what the consequences for Mr. Robertson’s location and treatment plan are. These moral disputes over how to calculate consequences are explored further in Chapter 6. By contrast, there are a few features of actions that are often considered right-​ making in spite of the fact that they do not necessarily produce good consequences or avoid harmful ones. These principles are variously referred to as duty-​based or, to use a word derived from the Greek for duty, deontological. Sometimes deontological approaches are called formalist because they base assessment of rightness or wrongness of actions on the “form” of the action rather than the consequences. Although not everyone would accept all of these principles, the list frequently includes veracity (that the action involves telling of the truth), autonomy (that the action involves respecting the self-​determination of others), and fidelity (that the action involves keeping of commitments, contracts, or promises). Bioethics problems involving these principles will be taken up in Chapter 7. In Mr. Robertson’s case, the principle of respecting autonomy could be central to the ethical evaluation. Mr. Robertson might believe that staying in the hospital best meets his personal goals at the end of life, particularly if he wants a clean and safe environment, interventions that can help prolong his life, and regular “checking in” by healthcare staff. Mr. Robertson might also believe that his healthcare team owes it to him to let him stay in the hospital as part of their general promise to care for him, making the principle of fidelity relevant as well. Some bioethics approaches include recognition of the fact that killing (at least killing of humans) is another feature of actions that intrinsically makes them wrong. We can refer to this as the principle of avoidance of killing. This notion is controversial since killing someone normally causes harm and so would violate the principle of nonmaleficence. But especially in healthcare, there may be instances in which killing is thought not to do harm, such as when a terminally ill patient is suffering terribly and she requests to have her life ended to spare further misery.This kind of case is a test of one’s intuitions about principles to see whether avoidance of killing is an independent principle regardless of benefit and harm or is merely an example of the principle of nonmaleficence. Some theorists would identify other characteristics of action that tend to make them morally right. For example W.D. Ross (1939, p.  21), identifies

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gratitude (that an action is taken in response to the kindness of others) and reparation (that an action is taken in order to make amends for harms one caused) as well as most of the other principles we have mentioned. Sometimes all the duty-​based principles are lumped together under the heading of the principle of respect for persons since they all share the idea that respecting another is right-​making. It is respectful of persons as persons to avoid lying, to respect their self-​determination, to keep promises, and perhaps to avoid ending another’s life. Likewise, Ross would say that it is simply respectful of persons that we express gratitude for kindnesses received and make amends for harms we have caused. The principle of justice has different interpretations, such as: cases ought to be treated equally; healthcare resources ought to be distributed fairly; and there is an obligation to prevent exploitation or other wrongful treatment of vulnerable or marginalized persons.The principle of justice is social. Often the focus of justice is on improving the lot of the least well-​off or on making people more equal. In clinical research, this principle is emphasized when researchers want to conduct experiments on a group that is not expected to benefit from the knowledge that is gained, which is a common concern when researchers from wealthy countries go into impoverished countries. In the clinical case we are examining, Dr. Lemmons believes that Mr. Robertson is unfairly taking advantage of resources, which is a justice concern (especially if the other patients are worse off than Mr. Robertson). But in evaluating this situation, it would be worth asking whether other similarly positioned patients are forced or coerced into going back home; it would be unjust to put this burden on Mr. Robertson if other, similarly situated patients are given more leniency. The list of principles that most theorists would consider is presented in Figure 8.

Conflict Among Principles We have noted from time to time that some of these principles could conflict with one another. Telling the truth to the patient might cause harm; benefiting the patient might require breaching the promise of confidentiality; respecting Mr. Robertson’s autonomy might be unfair to other patients; allocating resources so as to maximize good consequences might produce an unjust distribution of the benefits. The healthcare professional or patient who tried to live by all these principles all the time would find himself or herself perpetually stuck, unable to act because fulfilling the requirements of one principle would require breaking those of another. Different ethical theories attempt to resolve this potential conflict among ethical principles differently. In order to understand how such conflicts can be avoided, we need first to distinguish between different kinds of moral duty (exceptionless duty, prima facie duty, and duty proper).

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Consequentialist Principles Subjective 1. Beneficence 2. Nonmaleficence Individual

– –Hippocratic Utility– – Objective 1. Beneficence 2. Nonmaleficence

Duty-based Principles

The Ethic of Respect for Persons 1. Fidelity 2. Autonomy 3. Veracity 4. Avoidance of Killing

Subjective 1. Beneficence 2. Nonmaleficence Social

– –Social Utility– –

Justice

Objective 1. Beneficence 2. Nonmaleficence FIGURE 8   Ethical

Principles

Different Concepts of Duty Duty, according to German philosopher Immanuel Kant and deontologists generally, is independent of consequences. For example, the duty of promise-​keeping does not hold only in those cases where the consequences will be best if the promise is kept. It is also, in some sense, a duty even if the consequences are worse if we keep the promise. Here, however, we need to talk about several different kinds of duties in bioethics.

Absolute, Exceptionless Duties Sometimes we talk about absolute, exceptionless duties. Few people believe there are very many exceptionless, absolutely binding, rules. Parents may have said, “It is your duty to keep a promise no matter what.” That got across the point that keeping promises was important. Parents and teachers may have at first conveyed the idea that never under any circumstances should one break a promise. Immanuel Kant evidently had something like that view. He believed that every single time one breaks a promise, one has done something that is morally incorrect. Most don’t quite hold to that view, however.

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CASE 6 CONFLICTING PROMISES: A PHYSICIAN IN A BIND Dr. Lewis Hammonds has a patient, Florence Yasmin, who is suffering from a serious malignancy. Ms. Yasmin, after months of pain, says to Dr. Hammonds, “Doctor, if this pain gets so unbearable I can’t stand it anymore, promise me you’ll put me out of my misery and give me some medication that will end my life.” This is a weak moment for Dr. Hammonds, who responds, saying, “All right, I promise you I will end your life if you are that miserable. I will inject enough phenobarbital to mercifully kill you.” Normally, he would not have made such a promise, but in this instance for some reason he did. Two months later, the disease progresses to the point that Ms. Yasmin is in constant misery, and she says, “This is that moment, Doctor. I really need your help now. Will you mercifully put me out of my misery?”

It happens that Dr. Hammonds, like many people, also believes that it is morally wrong for a physician to kill, even for mercy. Moreover, he believes that, even if it were not wrong in principle, it would be wrong to violate the law that prohibits physician mercy killings. So now Dr. Hammonds has gotten himself into a bind. He has made a promise, which he believes is his duty to keep, but he also holds that it is his duty as a physician not to engage in mercy killing even when the patient is mentally capable and voluntarily requests such help. He has made two commitments, not to kill and to keep promises. As long as he believes these duties are exceptionless, he has no way out of his bind.

Prima Facie Duties In a case like this one, ethical theorists contrast absolute or exceptionless duties with what are called prima facie duties. Prima facie duties are duties that are morally binding, other things being equal. So, generally, if one makes a promise, it is one’s prima facie duty to keep the promise. At least the promise should be kept unless there is some other conflicting moral duty. But generally, it is also a prima facie duty not to kill people. That is to say that if nothing else were at stake, no exceptional circumstances, it is one’s duty not to kill, at least not to kill human beings. One can analyze the promise made to kill this patient into two moral components. There is the component of the promise made and there is the component of the act of killing. Looking at only one of those dimensions, say the act of promising, we would say it is one’s prima facie duty to keep promises. That is, looking only at the dimension of promise-​keeping, the physician has a duty to do

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what he said he would do. If there were no other moral dimension involved, he should keep his promise. On the other hand, looking at the situation only from the dimension of killing, we might conclude it is his duty not to kill. If there were no other moral dimension involved, he should not kill. We could then say there are two prima facie duties and that, in this case, they conflict with each other. Just as in physics two vectors of force may pull in opposite directions, so in ethics two prima facie duties may “pull” in opposite directions. When someone feels in a moral bind the way Dr.  Hammonds did, it may be because he or she feels two prima facie moral principles pulling him or her in different directions. Two moral elements clash, and each of them conveys a prima facie duty. In such cases, we need a method of resolving conflict among conflicting principles or duties.

Duty Proper The distinction between prima facie duties and duty proper may help clarify such situations.W.D. Ross (1939) proposed the strategy of balancing two conflicting prima facie duties. Ross said that, when there are two conflicting prima facie duties, one of them will be more weighty and become one’s duty proper. Somehow Dr.  Hammonds needs to come to some answer, some course of action. That calls for a theory of resolution of conflict among principles, an area of great controversy and importance in contemporary bioethics. Whichever course of action is determined to have priority is labeled the duty proper. Thus, Dr. Hammonds can be said to have two prima facie duties (to keep promises and avoid killing), but only one duty proper.

Theories of Conflict Resolution Different ethical theories of conflict resolution lead to the conclusion that one or another principle wins out. Four general approaches are available.

Single-​Principle Theories One solution is to deny that there are two prima facie principles in conflict. The Hippocratic principle that the physician’s only duty is to do what he or she thinks will benefit the patient is a good example. If Dr. Hammonds held such a view, he would feel bound neither to keep promises nor to avoid killing in all cases; he would only be bound to try to benefit the patient. If keeping his promise and euthanizing the patient would be most beneficial for her, then that would be his duty proper. If breaking the promise would be more beneficial to the patient, then that would be the duty proper. If there is only one principle, whatever it may be, then there can be no conflict, at least at this level.

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Radical libertarians are another example of single-​principle theorists. They elevate the principle of respect for autonomy (which they interpret as giving people the freedom to live according to their own values) to the level of the overarching principle. It is, for radical libertarians, the only morally governing principle. Hence, if autonomy were the only principle, Dr. Hammonds could do whatever respected Ms.Yasmin’s autonomy. If she agreed to be killed for mercy, he could do so. On the other hand, his autonomy would have to be respected as well, so he could not be compelled to kill her, only permitted to do so if he agreed. The physician Robert Sade (1971), philosopher Robert Nozick (1974), and the physician philosopher H. Tristram Engelhardt (especially in his early 1986 work) are often interpreted as giving autonomy this central position.1 Anyone who does not like the result of permitting consenting adults to kill one another probably will be uncomfortable with elevating autonomy to the position of the single dominating principle in healthcare ethics.This view considers irrelevant the maximizing of good consequences or any of the other principles such as fidelity or veracity (the duties to keep promises and tell the truth).

Ranking (Lexically Ordering) Principles The problem with the single-​principle theories is that they seem to many people to be too simplistic. It would mean, in the case of Dr. Hammonds, that there is nothing intrinsically wrong with either breaking a promise or killing. In the case of allocating scarce resources, it would mean nothing is morally wrong if some people, through no fault of their own, simply do not have the resources to get the basic healthcare needed to live a normal life. Many people believe there is more than one right-​making characteristic of actions. For example, we may have a duty both to avoid killing people and to keep promises. In such cases we might be able to rank the principles in order of priority. If the choice is between the principle of fidelity with its derivative duty to keep promises on the one hand and the principle of avoiding killing on the other, perhaps we can rank one categorically above the other. Perhaps the notion of never killing takes precedence over the duty of fidelity to promises, for example. If so, then the conflict between the two prima facie duties is resolved; avoidance of killing is the duty proper. This attempt to rank principles is sometimes called lexical ordering, referring to ordering as in a dictionary or lexicon; that is, all instances of one principle before any of the next, just as in a dictionary all words starting with a come before any words starting with b. The term was introduced by the philosopher John Rawls (1971), who argued that among his two principles of justice, the first must be satisfied before the second.2 Lexically ranking principles would solve the problem of finding a duty proper without reducing all ethics to a single principle. The difficulty, however, is that most people find it about as implausible to rank any one principle in first

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priority in all possible cases as it is to identify a single, all-​purpose principle. In our example, some people may believe that in all circumstances either fidelity or avoidance of killing should always take priority, but most would probably find that implausible.

Balancing The approach that has particularly wide appeal at the present time is one that denies that a single principle can be found to resolve all conflict and also denies the possibility of an exceptionless ranking. Instead it relies on the metaphor of balancing competing prima facie principles (see, for example, Beauchamp and Childress, 2013, pp. 15–​16).3 Just as with vectors in physics, sometimes one prima facie principle may be perceived as the more/​most “weighty,” sometimes another. This permits either fidelity to promises or avoidance of killing to win out, depending on the circumstances. The problem with balancing approaches is that they seem to rely on the intuition of the decision-​maker, and just about any pre-​existing intuition can be claimed to be more “weighty.”4 Opponents in a moral dispute may each discern that his or her favored principle is more weighty. Balancing may end up providing very little help in resolving moral disputes. It leaves an ethical controversy unresolved. Bioethicists Gert, Culver, and Clouser (2006, pp. 99–​129) criticize intuitive balancing of principles on these grounds. In the real world of ethics, most of us feel that often there really is more of a clear answer to the ethical dispute than a balancing approach to resolving conflict among principles would suggest. If we accepted an approach of balancing conflicting principles, we would face a second problem: We would always have to hold open the possibility that some sufficiently strong counterweight could be envisioned so that even our most firmly held moral convictions could be placed in doubt. Slavery is generally considered immoral because, at minimum, it violates the principle of autonomy. If, however, someone believed that autonomy had to be balanced against the principle of beneficence, one would have to hold out the possibility that in some (perhaps hypothetical) situation, so much good would come from slavery that “on balance” it might be justified in some case. If one is prepared to say that slavery is always wrong even if great extra benefit to society came from it, one probably cannot believe in a balancing method of resolving conflict among conflicting principles.

Combining Ranking and Balancing One other possible solution has been proposed to the problem of how to resolve conflict among principles in bioethics. This attempts to combine both ranking and balancing strategies. Perhaps some principles can be grouped into clusters. Within the clusters, individual principles might be considered co-​equal in importance so that they can only be balanced against one another. Even if that is the

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case, however, it is possible that one cluster might, when taken together, be more weighty, more significant, than another (Veatch, 1981, 1994).5 Such an approach might, for example, treat the consequentialist principles—​ beneficence and nonmaleficence—​as a cluster that cannot be ranked one over the other. According to this view, beneficence and nonmaleficence must be balanced against each other rather than, for example, giving nonmaleficence priority as the slogan primum non nocere (first, do no harm) suggests. Thus, the ­consequentialist principles in Figure 8 would be balanced against each other. Likewise, the principles that give rise to duties that are not based on maximizing good consequences, those on the right of Figure  8, could be treated as co-​equal and balanced against one another. Thus, if there is a conflict between respecting a physician’s autonomy to choose where to practice medicine and assigning physicians to particular areas so that justice is served by giving everyone a fair opportunity to receive medical care, neither of the two principles involved (autonomy and justice) would automatically and in all cases win out. Autonomy and justice would be balanced against one another. But, in contrast to more straightforward balancing approaches, perhaps either the consequence-​ maximizing principles or the duty-​based ones could be ranked above the other group. For example, the nonconsequentialist or duty-​based cluster of principles—​ including fidelity, autonomy, and veracity as well as avoidance of killing and justice—​in aggregate, might be ranked above the consequence-​maximizing cluster. Thus, balancing within clusters is combined with lexical ordering between the two clusters. The mere amount of good consequences would not justify violating autonomy or justice. Following this combined ranking-​and-​balancing approach seems to square with many of our considered moral judgments. For example, it is very widely held that it is not acceptable to treat a decisionally capable patient6 without the patient’s consent, at least if the treatment is offered for the patient’s own good. In fact, in American law, no patient adjudicated to be competent has ever been forced by a court of law to undergo medical treatment for his or her own good against his or her will. This holds even if the physician who wants to treat the patient can persuasively show that it is in the patient’s overwhelming interest to be treated against his or her will. Expressed in terms of ranking-​and-​balancing, the principle of autonomy (one of the duty-​based principles) always is ranked above Hippocratic utility (a consequence-​maximizing principle). On the other hand, the case of Dr.  Hammonds appears more ambivalent because the primary conflict is between two of the duty-​based principles—​ fidelity and avoiding killing. Neither is automatically given priority. It may be in this case that other, more subtle, moral considerations come into play. For example, in addition to promise-​keeping and avoiding killing, some people might see Dr. Hammonds as having a third duty: to benefit the patient. The principle of beneficence could be a “tie-​breaker” between the two duty-​based considerations. This could lead some people—​those who believe it would be a great benefit to

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Ms. Yasmin to end her suffering—​to conclude that the combined force of the promise made and the principle of beneficence outweighs the moral obligation to avoid killing. On the other hand, someone could argue that Dr. Hammonds made an implicit promise to his profession to be a healer, so actively killing a patient would not be permissible.They might view this as a case in which a prima facie duty to keep a promise to the patient is outweighed by the combined force of the prima facie duty to avoid killing and the prima facie duty to keep the promise to the healing profession. Thus, the points of difference between the two sides in this case are explainable by reference to certain principles and the comparative weight and ranking of those principles. As we see in this particular case, some principles might become especially important in light of the special role that healthcare professionals are argued to have. So even if certain principles are not ranked above others for most people, the healthcare profession might, in virtue of what it is, lead to some principles being ranked especially high or weighted especially heavily.

Translating Principles to Rules However one resolves the problem of conflicting principles, one more critical step will be required before one can determine what is morally required in a particular case:  The principles—​which are very abstract—​must be related to the specific case. One final disagreement in bioethical theory arises in deciding just how to go about relating principles and cases. In our map of the “levels of moral discourse” in Chapter 1, the second level dealt with rules and rights.This level was positioned between the individual case and the level of normative ethics (including the part dealing with the principles of morally right action). In Figure 2 of that chapter, we illustrated the continuum of views about how seriously various rules or rights claims should be taken in mediating between abstract principles and individual case judgments. We saw that at one extreme we might, theoretically, derive moral rules from principles and then treat these rules as exceptionless in controlling individual decisions (a position sometimes called legalism).That turns out to be quite implausible, however. Only if the exceptions are built into the rule might this work at all. For example, we have discussed the rule, “Always get consent from the patient before medical treatment,” but we built into that rule certain qualifiers such as that the patient must be mentally capable (otherwise, an appropriate person should be found to consent on behalf of the patient) and the treatment must be offered for the patient’s own good. One general exception is when there is a medical emergency without time for getting consent, and this exception is based on a specific duty to rescue or perhaps a notion of presumed consent. Beyond this, some people might be able to imagine other exceptions to the rule, at least in some cultures. At the other extreme is the position known as antinomianism in which no moral rules apply. Every case would be confronted de novo by the decision-​maker.

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But that seems unnecessarily restrictive. Even those who are skeptical about moral rules probably should be willing to treat rules as “rules-​of-​thumb” or “guidelines.” These might summarize previous thinking about similar situations and give the decision-​maker at least some idea of how others have thought about such cases. This view, sometimes also called the summary rule position, is favored by medical ethicists such as Joseph Fletcher (1966). He referred to this view as situationism, since it concentrated on the specific situation. This view is also sometimes called particularism (Hooker and Little, 2000). This view is also attractive to many physicians and other clinicians who are partial to making decisions by focusing on the individual case. Situationism takes the abstract principles of right action from the normative level and carries them to the bedside, using rules or bills of rights or codes of ethics as guides, but never permitting the rule to dominate individualized moral judgment about what the principles require in the case. Feminist theory, which is discussed in the next chapter, often favors this approach, giving less emphasis on rules as anything more than mere guidelines. In many ways the most interesting position along the continuum is located between this situationist view and a rigid legalism. In Figure 2 of Chapter 1, this is referred to as the rules-​of-​practice position. It emerged as a backlash against treating rules as mere guidelines or rules-​of-​thumb, particularly in the work of the philosopher John Rawls (1955) and the moral theologian Paul Ramsey (1967). Their view is that one cannot jump back and forth directly between abstract principles and individual cases. Rather there exist in a society certain “practices” that are rule-​bound and that rules (or correlative rights claims) must mediate between the abstract principles and the individual case. The principles, for them, determine the rules, and the rules, in turn, determine what constitutes morally appropriate conduct in the individual case. There are both pragmatic and more principled reasons why some people support the rules-​of-​practice position. The pragmatic reason is that humans are fallible. Particularly in medical settings where tensions may be great and decision-​ making rapid, some people may fear error if the principles are brought directly to each case rather than having the benefit of the wisdom of past decisions in similar situations. Thus, for example, “Always get consent before surgery” may lead to morally right conduct more reliably than telling surgeons to use their own judgment in each case about whether to get consent. This pragmatic argument may be particularly appealing when patient and healthcare professional do not know each other well. The more principled argument rests on the claim that the moral life is simply more appropriately thought of as a life in which people “play by the rules.” Someone might imagine that in the game of baseball, the game would be better if we allowed the batter four strikes. No one, however, would think it reasonable to put forward that proposal while a batter is up with two strikes in the ninth inning of a game. While in the middle of the game, one simply plays by the rules. At annual meetings, there might be a special time to consider changes in the rules

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based on abstract considerations about whether the game would be improved, but those proposals are not appropriate in the middle of the game. So, likewise, in the game of life some people believe that morality is a matter of playing by the rules. There may analogously be certain special moments when the moral rules are assessed by the principles.Thus, the World Medical Association (WMA) or the United Nations may have special times when they consider whether to amend the codes of ethics for patient–​professional relations. In 2017, for example, the WMA added (quite belatedly) the principle of autonomy to the Declaration of Geneva, but, at least according to those who subscribe to the rules-​of-​practice view, that normally should not happen when an individual case decision is being made. A view about the relation between principles and individual cases has been put forward called specification. Henry Richardson (1990) suggests that we can move from very abstract principles, particularly when two or more principles are in conflict, by “specifying” the implications of the principles for a particular “domain” of action. For those who believe it is too difficult to work out a general theory of how principles are ranked or balanced for the entire range of human conduct, they may believe that they can at least specify that relation for a more limited domain. For example, even if one is reluctant to claim that autonomy always wins out over utility, one might still specify that it does win out in the area of the rights of decisionally capable patients to consent and refuse consent to medical treatment offered for their own good. Specification may involve several principles. The specification that physicians in their role as licensed healthcare professionals should not kill even for mercy might be an example of a specification of the implication of the principles of avoiding killing, promise-​ keeping, beneficence, and nonmaleficence in the domain of the practice of medicine. One might reach this conclusion, even if one cannot completely work out these relations in other domains such as military action, police power, self-​ defense, and so forth. Alternatively, at least in the Netherlands, authorities have specified that physicians under certain limited circumstances can kill for mercy, perhaps suggesting a different specification of these abstract moral principles. Specification permits one to move forward working in one domain—​such as healthcare—​without having to resolve endless controversies in other domains. Relying on these strategies for resolution of conflict among principles has led many contemporary bioethicists to favor the principlist approach to bioethics that dominated the later part of the twentieth century. About that time, several other approaches began to emerge. It is to these other approaches that we turn in Chapter 5.

Key Concepts Autonomy Literally meaning “self-​legislating,” this is the mental capacity for making reasoned choices that reflect the person’s values, preferences, and sense of self.The formalist or deontological principle to respect autonomy involves permitting autonomous individuals to make their own decisions after due deliberation.

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Some also suggest a second, more positive, dimension to respecting autonomy that, under certain circumstances, involves assisting individuals in their decision-​making process, such as by removing barriers to informed and voluntary decision-​making. Avoidance of Killing (or Avoiding Killing) The principle that holds that actions are intrinsically morally right insofar as they avoid the taking of life (even in cases in which the one killed would be better off). Beneficence The principle that holds that actions are morally right insofar as they produce as much or more benefit than alternative actions; cf. Nonmaleficence. Consequentialism A  type of normative ethical theory that holds that actions or rules are morally right insofar as they bring about the best possible net consequences; that is, a theory based on beneficence and nonmaleficence. Deontological (Duty-based) Ethics Any of a group of normative ethical theories that base assessment of rightness or wrongness of actions on duties or “inherent right-​ making characteristics” of actions or rules rather than on consequences; cf. Formalism. Duty Proper One’s duty taking into account all relevant prima facie duties and the relevant rules for assigning priority to these prima facie duties. Exceptionless Duties Duties that are binding in all circumstances. Logic tells us that there cannot be two exceptionless duties that could possibly conflict with one another; cf. Prima Facie Duties; Duty Proper. Fidelity A formalist or deontological moral principle that holds that actions or rules are morally right insofar as they involve keeping commitments, promises, or contracts. Formalism Any of a group of normative ethical theories that based assessment of rightness or wrongness of actions on the “form” of the action rather than the consequences. Often this term is used synonymously with deontological ethics. Gratitude A  formalist or deontological moral principle that holds that actions or rules are morally right insofar as they are taken in response to the kindness of others. Justice The principle that an action is morally right insofar as it treats people in similar situations equally. Different theories of justice provide different bases for allocating resources justly. For example, egalitarian justice would distribute healthcare on the basis of need. Lexical Ordering Ordering potentially conflicting ethical principles as in a dictionary or lexicon, that is, all instances of one principle before any of the next just as in a dictionary all words beginning with a come before any words beginning with b.

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Nonmaleficence The principle that holds that actions or practices are right insofar as they avoid producing bad consequences; cf. Beneficence. Prima Facie Duties Duties that are morally binding, other things being equal. Such duties may be overridden by other duties that are considered higher priority or more weighty; cf. Exceptionless Duties; Duty Proper. Principle In ethics, an abstract right-​making characteristic of actions (such as beneficence, autonomy, or justice). Principlism The approach to normative ethical theory based on a limited number of abstract ethical principles (such as beneficence, autonomy, or justice). Sometimes the approach includes the provision that competing principles should be balanced intuitively or through reflective equilibrium. Reparation A formalist or deontological moral principle that holds that actions or rules are morally right insofar as they are taken to make amends for harms one caused. Respect for Persons A term referring to a type of deontological or formalist normative ethics in which the principles of moral rightness specify certain duties owed to individuals (such as respect for autonomy, fidelity, veracity, or avoidance of killing). Rules-​of-​Practice The view that rules define moral practices. Such rules mediate between abstract ethical principles and individual case-​by-​case judgments by providing firm positions. The rules-​of-​practice view is not normally amenable to the application of ethical principles directly to case judgments. Single-​Principle Theories Theories that determine rightness or wrongness of actions or rules in all circumstances on the basis of a single principle. The Hippocratic ethic (Key Concepts, Chapter  2) and social utilitarianism (Key Concepts, Chapter 12) are both examples of single-​principle theories. Situationism/​Particularism The view that moral rules mediate between abstract ethical principles and individual case-​by-​case judgments by preferring “rules-​of-​thumb” or guidelines rather than more rigid exceptionless rules or rules-​of-​practice. Specification The practice of applying ethical principles to a domain (such as healthcare) so that the proper relation among principles is articulated for a range of decisions without necessarily implying that the same relation would apply to decisions outside that domain. Utilitarianism The normative ethical theory that is committed to the view that the correct action or rule is the one that produces the best consequences considering all parties affected; often limited to those forms of consequential

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ethics that envision calculations of anticipated benefits and harms by subtracting expected amount and probability of harm from expected amount and probability of benefit for each affected party and then summing the net benefits for all those affected. Veracity A  formalist or deontological moral principle that holds that actions or rules are morally right insofar as they involve communicating truthfully and avoiding dishonesty.

Bibliography Beauchamp, Tom L., and James F. Childress, eds. Principles of Biomedical Ethics, 7th ed. New York: Oxford University Press, 2013. Brody, Baruch. Life and Death Decision Making. New York: Oxford University Press, 1988. DeGrazia, David. “Grounding a Right to Health Care in Self-​Respect and Self-​Esteem.” Public Affairs Quarterly 5 (1991): 301–​318. DeGrazia, David. “Moving Forward in Bioethical Theory: Theories, Cases, and Specified Principlism.” Journal of Medicine and Philosophy 17 (1992): 511–​539. Engelhardt, H. Tristram. The Foundations of Bioethics. New  York:  Oxford University Press, 1986. Fletcher, Joseph. Situation Ethics:  The New Morality. Philadelphia, PA:  Westminster Press, 1966. Gert, Bernard, Charles M. Culver, and K. Danner Clouser. Bioethics: A Systematic Approach. New York: Oxford University Press, 2006. Hooker, Brad, and Margaret Olivia Little, eds. Moral Particularism. New  York:  Oxford University Press, 2000. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report:  Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Washington, DC:  Department of Health, Education, and Welfare, 1978. Nozick, Robert. Anarchy, State, and Utopia. New York: Basic Books, 1974. Ramsey, Paul. Deeds and Rules in Christian Ethics. New York: Charles Scribner’s Sons, 1967. Rawls, John. A Theory of Justice. Cambridge, MA: Harvard University Press, 1971. Rawls, John. “Two Concepts of Rules.” The Philosophical Review 44 (1955): 3–​32. Richardson, Henry S. “Specifying Norms as a Way to Resolve Concrete Ethical Problems.” Philosophy and Public Affairs 19 (1990): 279–​310. Ross, W.D. The Right and the Good. Oxford: Oxford University Press, 1939. Sade, Robert M. “Medical Care as a Right: A Refutation.” New England Journal of Medicine 285 (1971): 1288–​1292. Veatch, Robert M. A Theory of Medical Ethics. New York: Basic Books, 1981. Veatch, Robert M.“Egalitarian Justice and the Right to Health Care.” In Health Care Reform: A Human Rights Approach, ed. Audrey R. Chapman. Washington, DC:  Georgetown University Press, 1994, pp. 106–​123.

5 ALTERNATIVE APPROACHES Virtues, Casuistry and Narrative Ethics, Feminist Approaches, and Care Ethics

LEARNING OBJECTIVES FOR THIS CHAPTER (1) Compare leading alternatives to principlism for analyzing bioethical issues. (2) Describe the benefits and drawbacks of the different methodologies. (3) Explain how a change in approach can change the evaluation of a bioethical problem with specific examples.

In addition to principle-​based approaches to analyzing bioethical problems, several other general strategies have been used.This chapter looks at four of these: virtue ethics, casuistry and narrative ethics, feminist approaches, and care ethics. Virtue ethics and casuistry are approaches that have existed for centuries. They fell out of favor in the twentieth century but have generated renewed interest lately. In addition, two newer approaches have emerged that have some overlap: feminist approaches and care-​based analysis. We introduce each here.

Virtue-based Approaches In addition to the question of what things are intrinsically good and what principles identify right-​making characteristics of actions, the third level of moral discourse (i.e., normative ethics) includes another question: What traits of human character are good to have? This branch of normative ethics is usually referred to as virtue ethics. Here the attention is placed not on the external features of behavior—​whether it produces good consequences or involves telling a lie, for example—​but rather on the internal disposition of the one carrying out the

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action. Aristotle (384–​322 bce) developed one of the most famous accounts of virtue ethics, and his Nicomachean Ethics remains essential reading for those who adopt this approach to moral problems. Aristotle argues that virtues have to be cultivated and practiced over time, and we need practical wisdom (phronesis) to discern when and how to be virtuous in a variety of situations. Virtues are simply praiseworthy traits of human character. Although much of bioethics in the past generation has focused on the principles of action rather than the character traits of the one doing the acting, traditional bioethics was concerned as much or more with the character of the healthcare professional. Within the past 30 years a resurgence of interest has occurred in virtue ethics in healthcare (Shelp, 1985; Drane, 1988; Hauerwas, 1981, 2004; Lebacqz, 2004; Campbell, 2005; de Raeve, 2006; Veatch, 2006; Pellegrino, 2006, 2007; Oakley, 2007, 2009; Holland, 2011; Beauchamp and Childress, 2013; Hamric et al., 2015). Much of this interest can be traced back to the work of Alasdair MacIntyre (1981) and others, who rediscovered virtue theory in the early 1980s. Nursing ethics has particularly emphasized the virtues, especially the virtues of compassion, humaneness, and disposition to be caring (about which more will be said later in this chapter). Character was the concern of many moralists and clinicians historically. The alternative view, the view of most analysts in the last decades of the twentieth century, is that what we really should worry about is whether the behavior itself is morally right—​regardless of the attitudinal disposition of the one carrying it out. For example, one of the principles of right action is beneficence—​the notion that an action is morally right insofar as it produces consequences that are as good as or better than alternative actions. Beneficence means literally “doing good.” By contrast, virtue ethicists might advocate the virtue of benevolence—​ having a disposition of kindness and fellow-​feeling and wanting good for others. Benevolence means literally “willing the good.” Dispositions consist of more stable than fleeting traits, and they include our emotional responses, ways of reasoning through morally charged situations, and our attitudes toward good or bad events. Dispositions are often revealed in patterns of behavior; thus, a truly benevolent person consistently demonstrates concern for others, rather than only showing these traits when it is convenient. It is apparent that there can be a correspondence between principles and virtues. The virtue of benevolence corresponds to the principle of beneficence. One might expect that people with benevolent character are more likely to act in ways that produce good consequences; that is, those willing the good might be more likely to do the good. But it is critical that this correspondence is not necessarily perfect. One might will the good and end up bungling so that the consequences are actually not good. One might be a well-​meaning do-​gooder who ends up doing more harm than good. Such a person would be benevolent, but not beneficent. Or, alternatively, one might not be of benevolent character—​not willing good outcomes—​yet for various reasons end up acting in

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a way that produces good consequences. This could happen if the one lacking in benevolence miscalculates or if he or she is selfishly promoting his or her own interests, yet is clever enough to know that the best strategy is to look good to others. Thus a rational, self-​promoting physician who really cares not at all about a patient’s welfare may, out of self-​interest, do something good for a patient—​ especially if he knows others are watching or if he desires a good evaluation. This raises important questions in ethics about the relation between virtues and principles of right action: whether promoting virtue in healthcare professionals is a good way to increase the chance of right conduct and whether morally good character or right conduct is more important. One would think that encouraging a virtue would increase the odds of the corresponding behavior occurring—​that encouraging benevolence increases the chance of beneficence—​but that may not always be the case. It also raises questions about exactly which virtues are intrinsically praiseworthy and whether different healthcare professions emphasize different virtues.

Virtue Lists

CASE 7 TURNING AWAY AN UNVACCINATED PEDIATRIC PATIENT The day after Halloween, Frank Dealy brings his five-​year-​old son Thomas to see Dr. Greg Jones following a fitful night of vomiting. When they arrive, Mr. Dealy sees a typed note on the pediatrician’s door that says: “To keep our clinic a healthy space for everyone, we can no longer accept patients who have not received routine vaccinations. This new policy goes into effect on the first of the new year. We can provide all necessary vaccinations at this clinic.” Dr. Jones has tried repeatedly to educate parents on the benefits of vaccines, but his efforts have not succeeded with a number of them. Dr. Jones believes he has to take a strong stand against these parents’ decision if he is to protect his practice and this rural community. Thomas has never received immunizations. Mr. Dealy never consented to vaccinations for Thomas, convinced that vaccines were too risky. Dr. Jones is the only pediatrician within a two-​hour radius of Frank’s house. Is Dr. Jones acting virtuously by hanging the sign and potentially turning away patients like Thomas?

While the list of principles of morally right action is fairly short and relatively consistent from one ethical theory to another—​the figure at the front of this book mentions only seven principles—​lists of virtues reveal much more

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variation. Each ethical approach seems to have its own virtue list. This is true in professional ethics, in secular, philosophical ethics, and also in religious ethical systems. Moreover, while many people tend to think of the various virtues as noncontroversial—​platitudes that are obviously worthy of praise even if they are hard to instill in people—​some virtues in some ethical systems actually turn out to be rather controversial. Consider the various lists of professional, secular, and religious virtues in Figure  9. With each list, we will return to Dr. Jones to consider the ways in which he has perhaps succeeded or failed to exhibit good character.

Professional Virtues

Secular Virtues

Religious Virtues

Hippocratic: Purity Holiness

General: Benevolence Care

Percival: Tenderness Steadiness Condescension Authority

Greek: Wisdom Temperance Courage Justice

Jewish: Gemilut Hasadim (loving kindness) Tzedek (loyalty or obedience)

WMA (1948): Conscience Dignity

Japanese: Kindness Devotion

AMA (1980): Compassion Respect for human dignity Florence Nightingale Pledge: Purity Faithfulness

FIGURE 9   Lists

of Virtues

Homeric: Skill Cunning Courage Self-reliance Loyalty Love of friends Hatred of enemies Courtesy Generosity Hospitality

Christian: Faith Hope Love (Agape) Muslim: Honesty Modesty Mercy Fortitude Wisdom Understanding Hindu: Care Attention Humility Constant reflection Confucian: Humaneness Compassion Filial Piety

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Professional Virtues The Hippocratic Oath, reflecting its origins in a Greek mystery religion, affirms two virtues, both of which have unmistakable religious overtones:  purity and holiness. The Hippocratic physician is to maintain purity and manifest a holy disposition. These virtues appear to be behind the injunction to avoid surgery. At least according to one interpretation, Hippocratic physicians should avoid contact with blood, since it would render one “impure.” Thus, it is suggested that the Hippocratic physician should leave surgery to others (lay people) who do not have to maintain their ritually pure state. Of course, neither of these virtues is the first to come to mind in modern healthcare. When the nurses adopted a modified and updated version of the Hippocratic Oath that they called the Florence Nightingale Pledge (in honor of the world’s most famous nurse), they kept the virtue of purity, but replaced “holiness” with “faithfulness”—​still a virtue with religious overtones, but less explicitly religious than “holiness.” Other healthcare professional codifications have chosen somewhat different virtues. Thomas Percival, in his 1803 Medical Ethics, chose four virtues for his fellow physicians, some of which seem strange and controversial today:  tenderness and steadiness along with condescension and authority. The latter two would particularly raise eyebrows today. When the American Medical Association (AMA) first adopted a code of ethics in 1847, it copied Percival’s virtues word for word. When the World Medical Association adopted its code in 1948, it was essentially a rewrite of the Hippocratic Oath, but when it came to selecting virtues, its authors chose “conscience” and “dignity.” These two virtues have been retained through the various rewrites up through the 2017 modification.The 1957 AMA code chose “respect for the dignity of man” and “devotion.”When the AMA did its most recent substantial rewrite in 1980, it fixed the gender reference so that the first virtue was changed to “respect for human dignity” but devotion was also changed to “compassion.” What is striking with these lists is that they seem rather random and varied. While some, such as “condescension,” are truly controversial, the others could be included in most people’s lists, but often are omitted without much sense of loss. Arguably, Dr.  Jones has demonstrated professional conscience by taking this stand against parental refusal of vaccination, on the assumption that Dr.  Jones believes that not vaccinating a child is antithetical to good pediatric care. On the other hand, Dr. Jones might not be exhibiting compassion by having a practice that will foreseeably cause immense hardship for rural families, especially since the patient, Thomas, has no say in what his father decides on his behalf. But although parents like Mr. Dealy might interpret this policy change as a failure of compassion, Dr. Jones might have actually been moved by compassion for at-​r isk children.

Secular Virtues The variation is even more pronounced when one turns to secular philosophical virtue ethics outside of medicine. The four classical Greek virtues are justice,

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temperance, courage, and wisdom. These are the dispositions that Plato found praiseworthy. For Aristotle, a virtuous disposition lies at the mean between excess and deficiency, so his list also includes having the right amount of patience, pride, and truthfulness. Homeric Greece included some of the most controversial virtues such as “cunning” and “hatred of enemies.” At one point a virtue for women was considered to be “obedience to husbands.” By contrast, one sixteenth-​century Japanese code cited the virtues of kindness and devotion. Again the lists seem open-​ended. After a few offensive concepts are dropped, the remainder often seem to be praiseworthy, but not necessarily essential to a list of virtues. Depending on the details of Dr. Jones’s motivation and attitudes toward this decision, posting that sign required courage; doing what he believes is necessary for the welfare of his patients could make him lose business and incur the anger of his community.Whether Dr. Jones has been just will depend on the interpretation of this virtue; Plato emphasized the importance of everyone doing their part for the state and upholding their agreements, so perhaps Dr. Jones has failed in that respect if he is not disposed toward respecting the implicit or explicit agreement with the community to provide pediatric care to any child in need.

Religious Virtues By contrast, early Christianity, as exemplified in the Apostle Paul in I Corinthians, lists faith, hope, and love (agape or charity). Roman Catholics tend to affirm both the Greek and Christian virtues, thus having a full list of seven (adding prudence, temperance, fortitude, and justice), while Protestants, being more prone to see tension between the Greeks and the Christians, often limit their list to the three Pauline virtues. In addition to the Biblical Christian virtues, other major religions also put forward virtue lists. The Islamic Medical Association of the U.S.A. and Canada lists in its “Oath of a Muslim Physician” the virtues of honesty, modesty, mercy, fortitude, wisdom, and understanding. The ancient Hindu Caraka Samhita lists care, attention, humility, and constant reflection. The famous Confucian virtues are humaneness, compassion, and filial piety. Filial piety is important in ancient Chinese medical ethics. It has been seen as implying that Chinese physicians are ideally like family members treating patients as brothers and sisters rather than the more distant “professional” relation that is the norm in Western culture. By contrast, there is no standard list of virtues in Judaism. It is a religion of the law with much more focus on norms of right conduct. Nevertheless, virtues such as Gemilut Hasadim (loving kindness) and Tzedek (loyalty or obedience) are often cited. Compassion, benevolence, self-​respect, faithfulness, and humility are sometimes mentioned. We do not know if Dr. Jones or the Dealy family have any particular religious faith. It is an interesting problem to consider what should happen if Dr. Jones and the Dealy family affirm different faiths. Should the virtues for the relationship be those of the healthcare professional or the patient? It could be argued that Dr. Jones has shown the virtues of justice and fortitude if his decision was based in a commitment to serve his neighbors and their long-​term health, even in the

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face of resistance.The sign might not have been the most prudent option for communicating the clinic’s policy change, and he might have served this community better by finding a way that did not alienate his neighbors and potentially lead to children not receiving regular care. He is demonstrating honesty by announcing his view on this issue to all current and future patients and families, but he might not be exhibiting proper understanding of what barriers exist for these families or what their values and concerns are. His decision may reflect self-​respect, but he might not be sufficiently humble in his approach to this complex issue in his community.

Care as a Virtue The appearance of care on the Hindu list calls for further comment. Care is also emerging on other lists. Nurses, in particular, have recently placed emphasis on care-​ oriented character as have feminist bioethicists (Gilligan, 1982; Noddings, 1984; Carse, 1991; Veatch, 1998; Jecker and Reich, 2004; Edwards, 2009; Grypdonck, 2009). Figuring out exactly what care means is a difficult task. A common thread in all of this literature, however, is the need of all healthcare professionals to return to an ethic with a more caring attitude. Sometimes care is seen as overlapping with the virtues of concern, compassion, and patient-​centeredness. This suggests that at least part of what care theorists have in mind is promotion of care as a virtue. They might then be suggesting both that bioethics needs to shift away from an ethic of morally right action to return to a virtue ethic and that, among the virtues one might choose, care deserves special consideration as either a virtue or a cluster of virtues for healthcare professionals. Dr. Jones’s sign is impersonal; it does not engage with the families individually so as to allow one-​on-​one interaction, which seems particularly important for such an impactful policy change. This new policy could make a significant difference for which children in his community are able to receive regular medical care and whether certain families feel unfairly penalized or shamed. If Mr. Dealy were to agree to have Thomas immunized despite believing it is not in his son’s interest, then the father would justifiably feel coerced, which could decrease the possibility of a mutually caring, therapeutic relationship with the pediatrician. Dr. Jones should reflect on what approach a caring physician should take in this situation, so as to protect and enhance the caring relationship he has with his patients, their families, and the larger community.

Problems with the Virtues One is left with a sense of relative disorganization in virtue ethics. Various writers within these traditions might pick somewhat different lists. Sometimes it is not even clear whether a concept such as care refers to a particular virtue, a package of virtues, or some other element of ethics. Some items, however,

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are clearly controversial—​the condescension of Percival (which was also copied by the AMA in its original code of 1847), hatred of enemies, and subservience. Others are not controversial, but nevertheless might be perceived as optional—​as acceptable, but not essential. In addition to the difficulty in identifying exactly which virtues should be on one’s list, virtue ethics poses other problems. Two worth reflecting on are what can be called the wrong virtue problem and the naked virtue problem.

The Wrong Virtue Problem The first problem, once one realizes how varied and sometimes controversial the virtue lists can be, is deciding whether one has chosen the right virtues for one’s list. Especially if the return to virtues is considered important because it is believed that promoting virtue is a reliable way of increasing the probability of morally right conduct, it will be essential that when a list of virtues is developed, one does not select the wrong ones. Choosing the wrong virtues will encourage the wrong corresponding behavior. For example, if one has concluded that respect for persons involves a cluster of ethical principles that should take precedence over beneficence, then touting the virtue of benevolence risks promoting the wrong behavior. It would encourage acting to benefit the patient even if respecting their autonomy is morally more important. If one is not enthusiastic about teaching “cunning,” then it will not do to include that disposition on one’s virtue list. The wrong virtue problem is concerned with selecting the right traits of character for one’s list, and, as we have seen, selecting the list may be harder than it may appear.

The Naked Virtue Problem A second problem with virtue ethics is determining why the virtues are important in the first place.Two possibilities are suggested. For some, virtuous disposition may simply be intrinsically valued—​even if it had no effect on behavior. For those holding this position, virtue is its own end. It is not necessary to add that virtue might promote morally right conduct. For others, however, virtue is not so much intrinsically valuable as it is instrumentally valued. It is often thought to be a reliable way—​perhaps the most reliable way—​to promote morally right conduct. Insofar as there is a correspondence between virtues and principles, one might expect that promoting the disposition to act in a certain way would be a good way to increase the chance that the action would, in fact, occur. Promoting the virtue of benevolence—​willing the good—​ according to this view is a good way to encourage beneficence—​doing the good. From this second perspective, virtues are important instrumentally as a way of encouraging morally right behavior. Provided one has chosen the right virtue to promote, such promotion might increase the odds of morally right behavior.

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But this raises an interesting empirical question: Is, in fact, promoting virtue—​ the naked disposition to incline one’s will in a particular direction—​the best way to encourage the corresponding behavior? One might think so, but this so-​called naked virtue problem needs to be examined. There are other ways of encouraging morally right behavior—​by the use of enforcement strategies, by modeling right behavior, and by rewarding right behavior and discouraging behavior that is wrong. Whether simply touting a particular virtue works as a strategy is a question that would require empirical evidence to answer. While it might seem plausible that promoting a disposition toward a certain kind of conduct would be the best way to encourage that conduct, that may not always be the case. In the worst case, leading people to think of themselves as being virtuous could generate the kind of moral self-​confidence that leads people to act without more careful reflection, consultation, and controls. Some healthcare professionals have been known to belittle consultation with committees on matters of ethics, feeling that they are morally devoted to their patients and therefore capable of doing what is right without the benefit of more institutionalized consultation in moral decision-​ making. It is even possible in some cases that promoting virtue could lower the chance of the morally right conduct (when compared with carefully worked out standards for peer review, cautious reflection, and expectation of mechanisms for enforcing standards for right conduct).

8

Casuistry and Narrative Ethics While some versions of principle-​based approaches are commonly called top-​ down because they tend to start from a few abstract principles and apply them “downward” to cases,1 casuistry and narrative ethics are often referred to as bottom-​up approaches because they start from the details of cases and extract more general moral insights or principles.We will turn first to casuistry and then to narrative ethics.

Casuistry Casuistry is a method that relies on analogical reasoning from paradigm cases. A paradigm case is one in which there is broad consensus from relevant experts about why things should have been decided a certain way. When confronted with a new case that has similar features to a paradigm case, the task is to determine to what extent the cases are relevantly alike such that the reasoning used in the paradigm case should or should not apply to the new case.The new case might present an exception to the conclusions that have been derived from the paradigm case, or perhaps the new case is not relevantly similar enough to be compared to any existing paradigm case, which means that it might become its own paradigm case (depending on whether any expert consensus can be reached on how to resolve it). Most casuists believe that some guiding rules are needed to parse the moral

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features of cases, although they will be looking for ways in which the details of a case should challenge or add more nuance to these rules.This means that the rules themselves are open to revision according to the collected wisdom gained from evaluating cases over time, although rules with a strong case history behind them will tend to be more fixed. The court system relies on a casuist methodology like this. Casuists can accept any number of theoretical commitments, just like principlism cuts across theoretic differences to offer a theoretic-​neutral methodology. A benefit of casuistry is its emphasis on consistent judgments across similar cases, which can be a safeguard against idiosyncratic or biased reasoning. Casuistry in medicine was first developed centuries ago. It fell out of favor because it was seen as justifying many conclusions that seemed too lenient, particularly in areas of sexuality. Casuistry was resuscitated in the late twentieth century by Albert Jonsen and Stephen Toulmin (1988). In bioethics, especially in clinical ethics, casuistry has a natural appeal. Clinical medicine revolves around specific cases, and clinical reasoning often involves analogical reasoning in comparing the current patient’s medical situation to “textbook cases.” In the history of bioethics, we see expert consensus forming around landmark cases, the result being that those cases get continually referred to when approaching novel cases. For example, the right of competent and decisionally capable patients to refuse any and all medical interventions gradually became established with cases through the twentieth century and then became more firmly fixed in what have become paradigm cases, such as those of Karen Quinlan (1976), Elizabeth Bouvia (1986), and Kathleen Farrell (1987). The courts ruled in favor of the patients’ rights to bodily sovereignty and self-​determination in these cases, and although the decision in Bouvia’s case has raised concerns about how the judge and the patient expressed devaluation of life with disability, the ultimate right of the patient to be free from forced or coerced treatment has received widespread support from bioethicists. If another case arises where a patient wants to decline life-​sustaining treatments, an ethical analysis could start by comparing this case to those of Quinlan, Bouvia, and Farrell. If this new patient is incapable of making their own contemporaneous, informed decisions, then this patient’s case cannot be determined along the exact same lines as Bouvia’s or Farrell’s—​a different paradigm case is needed (perhaps that of Karen Ann Quinlan, 1976, in which the parents were given authority to decide to withdraw respirator support on behalf of the patient, based on the patient’s earlier expressed wishes). If the patient is their own decision-​maker, then further side-​by-​side case analysis could reveal that similar ethical reasoning should apply and lead to similar conclusions.We could take into consideration the concerns about how Bouvia’s disability was framed by the court and try to bring a better awareness of those issues in the analysis of the new case, for example by affirming the patient’s right to refuse treatment but also seeing if additional medical, social, or financial supports could be offered as a more robust demonstration of respect for the patient as a person.

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Narrative Ethics Some of our most confident moral judgments come from stories, from our learning about specific moral challenges that actual or fictional people have faced and tried to resolve. Some of the classic narratives that tell stories to convey moral insights include the Biblical parables, the Homeric stories, and Aesop’s fables. Each tells a story that presents a role model for moral conduct and virtue (or lack thereof). Narratives structure our culture, our collective perception of our history, how we communicate and connect with others, and how we think of ourselves. Narratives engage us as imaginative and empathic creatures, pulling us into lives and perspectives that are not our own. Medicine can fall into reductionistic traps by stripping the narrative detail from cases and giving bullet-​point lists of facts that are deemed most relevant based on commonly asked questions. Even if some of these reductionistic practices are inevitable in medicine, there is no doubt that rich, contextual, fine-​g rained details of meaning are lost in the process. Narrative ethics focuses on contextual particulars, analyzing the interpretative meaning that is shared in dialogue with others in the telling and retelling of stories. Beyond this broad characterization, there is discrepancy in the narrative ethics literature on what this approach offers the field of bioethics. Bioethicist and physician Howard Brody (2003) argues that narrative ethics has two central claims: (1) narratives are necessary to make sense of any ethical analysis, including those that are principle-​driven, and (2) narratives can, on their own, provide moral knowledge and justification. In order to understand what is ethically at stake in any given situation, we need to understand the sorts of details that are conveyed through narrative, such as what suffering or authenticity mean for these people in their particular social context. Principles or rules cannot be too abstracted if they are to be meaningful in ethical analysis. Brody’s second claim is more controversial, but he argues that narratives are fundamental for how we make moral judgments in our roles and relationships, and grasping narratives is essential to how we develop any kind of moral awareness at all. On this view, narratives are essential to how we even conceive of what is moral and virtuous. Within bioethics, stories of illness, pain, and disability illuminate the features of a medical condition that otherwise can be obscured underneath diagnostic labels and evidence-​based medicine.These stories show that the biomedical interpretation is not necessarily the most accurate or important interpretation. In the stories of healthcare professionals, we learn of their striving as moral agents as they attempt to connect with patients and their colleagues while under the alienating strain of trying to ease sickness and death. The skills of narrative ethics require the cultivation of moral perception, moral imagination, emotional depth and empathy, and sensitivity to details. Many of the tools of narrative ethics will be similar to how we unpack stories in literature and drama, analyzing characters, plot, linearity, and the passage of time. We have to be able to look at stories within

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them as well as outside them, being reflective of how we ourselves are embedded in stories that we tell ourselves, that others tell of us, and that our culture tells of our socio-​historical surroundings.

Problems with Casuistry and Narrative Ethics One concern with casuistry is that someone could take advantage of this methodology to argue for any position they preferred by manipulating the analogies between their current situation and the paradigm case of their choosing. This is a general worry whenever someone attempts moral reasoning, so it is not unique to casuistry. Another challenge with casuistry is if there is no paradigm case with relevantly similar features, then we are left without a clear compass for guidance. Similarly, this methodology will run into obstacles if it is not clear what case should count as the paradigm case, especially if two seemingly paradigm cases contradict each other in their reasoning and resolution. With casuistry, we also have to ask the question: When do we know if the paradigm case should no longer be a paradigm case? That is, how do we know when this case should no longer guide future decisions? For example, the Quinlan paradigm, which involved a refusal of a ventilator, was challenged when new cases, such as Bouvia, appeared involving refusal of medically supplied nutrition and hydration, raising the question of whether there was a morally relevant difference between the two. Then Bouvia was questioned when cases emerged that involved refusal of orally supplied nutrition. The history of healthcare is full of unfortunate cases that shaped thinking on topics for years. When a new case challenges the paradigm, we need to know when the new case should “win” in setting precedent for future cases. In some instances, there will be a build-​up of challenging cases that pushes the reasoning in the paradigm case over time. In other instances, a challenging case should encourage a moral epiphany, a novel insight into a difficult moral situation. If we are too wedded to the existing paradigm cases, then opportunities for moral epiphanies will be lost. Narrative ethics faces similar problems. Is there such a thing as a “good” story or “bad” story, or are all stories equal in what perspective they provide? If some stories are better than others, how do we discern that? When narrative ethics is proposed as its own methodology, principlist critics argue that a story cannot make any moral sense unless the storyteller and audience already have a grasp of the relevant moral principles. The chicken-​and-​egg dilemma continues to stir up debates between these camps—​do we first need stories to gain basic competence with moral concepts or do we first need principles? Principlists often argue that narrative ethics can be helpful in the careful application of moral principles, but narrative ethics is then a supplement to principlism and not a distinct methodology. Given that any situation will have numerous (if not innumerable) stories that could be offered to frame it, we need to know whose story should guide the

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ethical analysis. Some of the relevant storytellers are more prominent than others, and people with important stories to tell are often marginalized or otherwise silenced by cultural forces. A related concern is that if we only approach moral problems through narratives, then we risk losing the critical distance that might be needed to criticize moral perspectives contained within prevailing narratives. If relevant narratives have not been solicited, and narrative skills have been skewed to favor prevailing narratives, then it is not clear whether there are sufficient resources within narrative ethics to make important criticisms. This problem is especially pronounced in societies with long traditions of oppression, where stories that challenge oppressive forces might not be readily available or intelligible. This problem of oppressive stories has received more attention from bioethicists and others (Nelson, 2001), and marginalized stories are receiving wider recognition for the insights they have for healthcare.

Feminist Approaches CASE 8 WHEN A MINOR WANTS BARIATRIC SURGERY On Jasmine’s sixteenth birthday, she asked her parents for one gift: weight-​ loss surgery. She learned about the surgery from kids at school, and she read success stories online about adolescents like her. Despite trying multiple diets over the past year, Jasmine has struggled to reach her desired weight. Her physicians raise concerns about Jasmine’s weight at every office visit, and at 5'3" she weighs 225 pounds (with a BMI of 40, considered the beginning point of “extreme obesity”). She also has mild sleep apnea, meaning she has some difficulty breathing in her sleep. A group of her classmates tell her that she is “ugly” and that she “doesn’t look like a girl,” and the bullying has become severe enough that Jasmine has started skipping school. Her school counselor contacted Jasmine’s parents and expressed concerns that Jasmine has become increasingly “troubled.” Her parents tried cooking different kinds of foods at home on their budget, but they are constrained by their work schedules and the selection at their local groceries. Her parents decide to support Jasmine in her desire for the surgery, and Jasmine’s aunt offers to help pay for the procedure. With the hopes that the surgery will help Jasmine feel better physically and mentally, they make an appointment with a nearby hospital that has a strong record of pediatric bariatric surgeries.

The ethics of this scenario might seem relatively simple. It could be argued that this case boils down to whether the physician believes the surgery would offer more medical benefit than harm. Especially since Jasmine has the support of her family,

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and it seems the surgery could help prevent obesity-​related diseases and make Jasmine more comfortable in her body, there might not be any clear moral problem at all with healthcare professionals offering her the surgery. A feminist lens brings into focus salient details of this case that should not be overlooked, however, provoking questions that could make a significant difference for the ethical analysis.

The Evolution of Feminist Thought The history of feminism has been divided into different waves, with each wave roughly representing a shift in political priorities or philosophical thinking. The First Wave of the nineteenth century focused on political and economic rights, particularly suffrage (voting rights). The Second Wave started to reach its peak in the 1960s, taking inspiration from other civil rights movements. Efforts to improve political and economic equality continued, and sexual rights took center stage for many activists and thinkers. The Third Wave began in the 1990s with more challenges to standard notions of womanhood and femininity. Intersectionality—​the overlapping social identities of sex, gender, race, class, sexual orientation, disability, and other categories of power/​disempowerment that are collectively connected to systems of oppression and disadvantage—​became a major focus of feminist concern. Feminist thought began reaching more into global perspectives, decentralizing Western political struggles. Arguably, we are in the Fourth Wave, where the fights for equal pay and safe streets (for example) are being rekindled with the help of the internet.Women from all over the world have connected through internet campaigns and social media, and intersectionality remains a primary topic of global feminism. As can be seen, since its early articulation centuries ago, feminist philosophy has branched considerably. It is more accurate to think of many feminisms, not easily reducible to any particular set of tenets. A core feminist commitment, however, is advocating for the equality of women. Feminisms break down traditional views of gender, sex, and sexuality that are wrapped up in oppressive norms. Many feminists over the years have broadened the scope of consideration beyond just women to include other oppressed groups and minorities. Black feminists have long made the point that identities are intersectional, meaning that oppression cannot be viewed along sex/​gender lines alone. All of this is to say that feminism is not monolithic; feminist approaches come from a variety of rich historical, political, and philosophical traditions. Feminist approaches provide a critical lens, revealing the ways in which traditional theories and philosophies tend to center on experiences, ways of knowing, and ways of justifying that have been historically associated with men or masculinity (making them androcentric). When the experiences and perspectives of women are brought into focus, then we have new tools for moral investigation and a broader set of moral problems with which to grapple. For example, feminist philosophers and activists demonstrated how the private is political:  domestic

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relationships and domestic labor were shown to be common sources of injustice that scale up to hinder equality in the public sphere, such as in the denial of civil and economic rights to women. Domination and subordination—​the overt and subtle uses of power to render persons vulnerable—​are the focal point of analysis.

Feminist Approaches and Ethical Theory Feminist approaches do not presume a particular ethical theory. Someone could be a feminist and also a consequentialist, deontologist, virtue ethicist, or narrative ethicist, for example. A  common thread in much of the feminist ethics literature is an argument for attentiveness to contextual particulars instead of abstraction to general rules; rule-​based systems, the argument goes, cannot sufficiently account for particular relationships or social roles (see the discussion of situationism/​particularism in the previous chapter). A feminist approach to Jasmine’s case would raise a series of questions along these lines: Does Jasmine feel undue pressure from her parents or aunt to receive this surgery? How have her relationships affected her perception of her body and her health? Have the experiences of body-​shaming and sexist bullying led Jasmine to believe that she will only be worthwhile as a person if she looks a certain way? Would a similarly situated 16-​year-​old male face these choices differently? Is there a link between enculturated female feelings of insignificance that are associated with thinness and Jasmine’s desire for the surgery? Feminist philosophy makes descriptive and normative claims—​that is, it considers how things really are and how they should be. For instance, numerous feminists have argued that humans are not atomistic individuals who decide matters in isolation from others; rather, we are socially embedded agents, and our relationships make all the difference for how we develop. Historically, the ability to reason was framed as a masculine trait and the ultimate indicator of personhood, and women were thought to have run-​amok emotions that made them struggle with reasoning. If we are all socially embedded creatures with strong relational ties that shape who we are, as many feminists would argue, then faculties for reason cannot be divorced from our emotions, social roles, and bonding with others. This relational view of human agency poses a significant challenge to traditional conceptions of autonomy, which emphasize control, self-​ sufficiency, and individualism. The relational view of autonomy presented by feminist philosophy instead asserts that we are all interdependent, and the traditional view of autonomy is not only inaccurate but dangerous. If only people who appear to be in control and self-​sufficient are identified as autonomous decision-​makers, and if those traits are more commonly associated with men and other groups with social and financial privilege, then other persons will not have their capacities for autonomy recognized. The result can be infantilization and unwarranted paternalism.

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A feminist analysis of Jasmine’s case could raise further concerns about the authenticity and voluntariness of Jasmine’s choice; there are already major pressures for girls and women to be thin, and Jasmine has even more pressures from her doctor and bullies. Bariatric surgery could seem like a drastic step to take after one year of unsuccessful diets. Although the doctor might be right that Jasmine’s weight poses risks for her long-​term health, feminist scholarship has challenged the legitimacy of BMI as a predictor of poor health.The physician might be overly focused on BMI and the obesity label. Maybe Jasmine is actually quite active, but her physician struggles to believe her when she reports her physical activity—​a problem often reported by women who are viewed as overweight. Additionally, the parents appear to be under strain to help Jasmine, and their socioeconomic circumstances are making less invasive options more difficult than they should be, so arguably the physician should connect the family with local resources and assist them more in reaching specific health goals for Jasmine before agreeing to a significant surgery. A feminist lens is useful for analyzing all aspects of healthcare, including clinical medicine, research, policy, and public health initiatives. This approach to bioethics has identified moral problems that were previously neglected, raised new questions, increased the urgency or priority of certain issues, and revealed how even well-​intentioned healthcare professionals and researchers have made costly errors for women and other historically marginalized persons. The list that follows is a small sample of areas where feminist bioethics has made important contributions: • Women have been historically underrepresented as participants in clinical research. Women’s hormone cycles and child-​bearing potential were considered too problematic for tightly controlled trials. This practice of excluding women was supported by the androcentric assumption that the male body can be a model for all human bodies. The knowledge gained from many of these studies led to poor advice for women, such as the recommended dosage of certain medications. Pregnant women continue to be systematically excluded, even from studies that could benefit pregnant women. Feminist bioethicists revealed the scientific and moral problems with these exclusions, and their efforts have persuaded research protocols and guidance at the federal and local levels. • Throughout the history of psychiatry, a number of problematic diagnoses have been proposed for women or gender-​nonconforming persons. Hippocrates created the diagnosis of hysteria, used to describe a “wandering uterus,” which he believed was a condition that unmarried women were particularly susceptible to. A version of hysteria was in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders until 1980. Feminist bioethicists have critically analyzed the assumptions that underlie sex-​or gender-​specific diagnoses, such as those related to gender stereotypes. They

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•

•

have argued against unnecessary medicalization that also leads to stigma, assumptions of irrationality, and over-​prescription of medications that can have significant risks. The experience of having a heart attack can vary significantly for men and women.The picture that most people, including most healthcare professionals, have is of someone clutching their chest in tremendous pain after having shooting sensations down their arm. It turns out that this experience typifies heart attacks in men, but not in women. Women with angina (chest pain) frequently have their symptoms dismissed, and there are reports of women being sent home from the emergency room when they were in the midst of a heart attack. Feminist bioethics offers analytic tools for dissecting what can go wrong in these clinical encounters: Female patients might feel pressured to minimize or neglect their discomfort, and healthcare professionals can fall into habits of dismissing these complaints as “normal” or “just a part of stress.” Medical practices, public campaigns, and laws frequently have controversial expectations of women’s reproductive lives and mothering choices. Feminist bioethicists have offered a variety of critiques in response to laws that compel women to continue unwanted or medically precarious pregnancies. On the other hand, women with problem pregnancies have been urged to terminate them even though the women desperately want to attempt to carry the child to birth even at great risk to the woman. The feminist lens has been used to show the many ways in which pregnant women are constrained or pressured in their everyday decision-​making, even when limiting options in this way is not based on good evidence. Women are often expected to make extreme sacrifices for the sake of the pregnancy and future motherhood, but this expectation reveals a lack of consideration for the woman as a whole person. Feminist critiques of breastfeeding campaigns have highlighted how women are frequently shamed (by healthcare professionals and others) for choosing against breastfeeding, even when there are legitimate reasons for choosing a different feeding method.

Problems with Feminist Approaches Many of the public objections to feminism are due to pervasive misunderstandings of what feminism really is. A commitment to the equality of all persons, regardless of sex or gender, should not be controversial. Some feminist positions are more radical than others, and it would be a mistake to assume that the cartoonish picture of feminism often portrayed in popular media is accurate, comprehensive, or fair. Feminist approaches diverge significantly, so there is no singular theoretical framework. Feminists often disagree among themselves on a host of topics. It is a concern whenever people using the same broad approach to a moral problem cannot come to a consensus. For example, in Jasmine’s case, while some feminists

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would doubt the voluntariness of Jasmine’s decision because of the social pressures involved, other feminists would rebuke that argument for not trusting Jasmine enough as an agent. As another example, there are deep divides in feminism on the topic of gestational surrogacy (where one woman contractually agrees to be impregnated with the genetic material of a couple and carries their baby to term). Is this a form of wrongful objectification and commodification of the female body? Is it always exploitative? Or is gestational surrogacy an ethically acceptable practice that someone can agree to freely? These issues will be explored further in Chapter 11. Some feminist approaches are criticized for only prioritizing issues that are primarily experienced by white women or women who have other forms of privilege. These approaches also fail when they address issues commonly experienced by (for example) women of color but they do not solicit the perspectives of women of color. It is argued that feminism can actually hurt arguments for equality if it neglects the intersectionality of identities; many women experience oppression and discrimination not just on the basis of their sex, but also on the basis of their race, disability, sexual orientation, gender identity, and socioeconomic status. A bioethics topic such as assisted reproductive technology would be remiss if it only focused on the needs, interests, and experiences of privileged white women. Feminist approaches also encounter similar challenges as narrative ethics and (as we will see) care ethics. If abstract principles are generally dismissed and replaced with attentiveness to particular relationships and contextual details, then the worry is that feminist frameworks will either have to “smuggle in” principles at some point or lose out on generalizable moral knowledge. For this reason, principlists have argued that they can accommodate the core insights of feminism to enhance their methodology. Any theory or methodology in bioethics could accept the added benefit of a feminist lens. On the one hand, the feminist lens should not be manipulated to allow any possible conclusion in bioethics; on the other hand, feminist approaches offer critical insights and challenges, and their adaptability for different theoretical commitments is a strength.

Care Ethics

CASE 9 WHEN AN UNDOCUMENTED PATIENT NEEDS A RULE BENT Pedro Flores has been coming into the Emergency Department for the past year with difficulty breathing and rapid heart rate. He has been diagnosed with mild congestive heart failure, and the physicians keep telling him that he needs regular medications, including diuretics and blood thinners, to manage his symptoms. Mr. Flores is an undocumented patient, having

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moved to the United States as an adolescent 30  years ago. He does not qualify for any federally funded insurance due to his undocumented status, and the state where he lives does not offer any special coverage for undocumented patients. He has no other insurance, although he works full-​time for independent contractors.2 The case manager refers him to community clinics that provide some of the medications he needs, but the clinics struggle to provide him with refills reliably. Julia Kim has been Mr. Flores’s nurse the last several times he has come to this hospital, and they have spent hours bonding over Latin cuisine and camping. Mr. Flores even opened up to her when his mother died last month. Every time he leaves the hospital, Ms. Kim knows that he will likely return with worsening symptoms. She considers giving him some “extra” medications to take home, even though it is against the rules. She has never considered bending the rules like this for a patient, but she now feels compelled to help any patient in a desperate situation like Mr. Flores’s.

Someone privy to Ms. Kim’s thoughts might think that her plan is immoral. After all, she is, in a real sense, stealing from the hospital to make special accommodation for a patient she likes. This might seem unfair or unjust to other patients who do not receive this accommodation, and she is likely violating her agreement with the hospital as an employee who is entrusted with its resources. Her plan might not appear universalizable—​that is, if every nurse were to give away medications and other resources away for free whenever a patient could not afford them, then the healthcare system could quickly break down. On the other hand, Ms. Kim is acting out of deep compassion and care for a patient who has become a friend. From her perspective, she is acting in a way that is consistent with how we should care for friends, which includes giving them special consideration She is not looking at this situation abstractly like a hospital administrator; her relationship with Mr. Flores has helped her understand his anguish and anxiety, and she also feels the injustice of his situation, given that he is a hard-​working member of the community who has been denied opportunities for healthcare coverage. Moreover, she is expanding this caring concern to other similarly situated patients. She might even think to herself, “I can’t do nothing in this situation!”

The Origins of the Ethic of Care Psychologist Carol Gilligan (1982) coined the term ethic of care. She critically reviewed the moral development studies performed by her mentor, Lawrence Kohlberg, and found that his conclusions either neglected or minimized the moral perspectives of female subjects. He argued that the height of moral development was demonstrated by application of abstract rules, what has been called a justice perspective (a complex term with multiple interpretations that is discussed below).

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When asked to reason through a moral problem, a significant number of female participants (when he included them at all) tried to respond creatively to the needs of all the people in the scenario. Female participants tended to emphasize the close relationships of those in the dilemma, a care perspective. Gilligan argued that the ethic of care is not less developed or in any way inferior to the justice perspective. She compared the justice-​to-​care shift to a gestalt shift: when looking at a picture, someone might first perceive only a duck, but then, after a second look, the person could perceive only a rabbit. Her point was that the care perspective attunes moral perception in a distinctive way. The details of relationships and attachment come into focus, and they guide moral reasoning to reach a conclusion. Gilligan found that girls/​women understood the justice perspective, and boys/​men identified care-​related concerns as morally relevant, but the groups differed in what they focused on and prioritized in their reasoning. She found that care-​focused reasoning rarely occurred in male-​only groups. Ultimately, Gilligan believed that the morally developed person would be able to take advantage of the insights from both justice and care perspectives. Philosophers continue to debate what Gilligan’s psychological work means for ethics and bioethics. If the main takeaway from care ethics is just that relationships matter in moral reasoning, then there is nothing particularly controversial or groundbreaking in that claim. Gilligan seemed to make a stronger point: Care ethics is supposed to shift what questions are asked, what details are deemed morally salient, and what concerns “rise to the top” of moral consideration. Care ethics pushes us to look at moral problems from a place of intimacy and closeness, rather than from a place of detachment. With this orientation, our vulnerabilities and interdependence are always central to our moral reasoning.

The Meaning of the Care Perspective Looking at care ethics from the perspective of the issues of ethical theory summarized in the introduction, various proponents of a care perspective make somewhat different points. Three claims seem to emerge. Different theorists claiming a care perspective may emphasize one of more of the following:

Specific Situations Take Priority Over Moral Rules One of the four levels of moral discourse described in Chapter 1 was the level of “rules and rights claims.” Some moral theories move between abstract moral principles and specific cases with the use of intermediate rules that are taken very seriously. The principle of autonomy gives rise to the rule “get informed consent before surgery,” for example.Those who treat rules as more binding view the rules as establishing practices from which one should not deviate in the normal case. This is sometimes called the rules-​of-​practice position. John Rawls is a proponent. Other moral theories downplay the importance of binding rules, freeing

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up the decision-​maker to make judgments on a case-​by-​case basis according to the contextual details of the situation at hand. Those who hold this view have been called situationists. Joseph Fletcher was an example. Others, such as Maggie Little, have used the term particularism to defend similar views. Some care theorists focus on this debate, coming in on the side of the situationists or particularists. Those who believe that the nurse, Julia Kim, should focus on getting Pedro Flores the medications rather than strictly adhering to rules about medication access illustrate this aspect of care theory. Gilligan may confuse matters by referring to those who support the more rigid use of rules as taking the “justice perspective.” In fact, rules may be based on any of the ethical principles (as the “always get informed consent before non-​emergent surgery” rule is based on the principle of autonomy, not the principle of justice). On the other hand, those who downplay the role of rules may apply the principles in their case-​by-​case decisions, and some of those decisions may reflect the principle of justice. Nurse Julia Kim may, in fact, be striving to be just or fair to Mr. Flores even though she refuses to rigidly follow the hospital’s medication rules. Calling her approach a “care perspective” may be confusing.

Among Virtues, Care Should Prevail A second kind of claim that may be involved in the care perspective suggests that care theorists are taking a position within virtue theory. We have seen that different virtue theories emphasize different virtues. Among these is the Greek virtue of justice. Other virtue theories might focus on compassion, benevolence, or humaneness as the prevailing virtues. Perhaps Gilligan and other care theorists are taking a stance in the debate within virtue theory that holds that the prevailing virtue should not be justice, but something called “care.” Care as a virtue presumably reflects the kind of intimacy, closeness, and concern that emerges from care theorists. Care might be seen as a virtue deserving special predominance. Or perhaps care is a term that is shorthand for a “package of virtues” that includes compassion, benevolence, humaneness, and similar virtues.To favor “care” over “justice” would then be affirming one virtue or package of virtues over another that focuses more on the virtue of justice.

In the Debate between Principles of Right Actions and Virtues, Virtues Should Prevail There is a third kind of claim that care theorists sometimes may be making. We have seen that two major branches of normative ethics are “action theory” (which affirms a small number of principles of right action) and “virtue theory” (which affirms a list of praiseworthy traits of good character). Sometimes care theorists seem to contrast justice and care as if they were contrasting action theory (which includes a set of moral principles of right action including justice) and virtue

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theory (which includes a set of moral virtues or praiseworthy traits of good character including such virtues as compassion, benevolence, and perhaps “care”). When a care theorist affirms the care perspective over the justice perspective, this may be shorthand for taking a stance on the debate over the relative importance of action theory and virtue theory in which “justice” is a code label for the principles of right action and “care” is a code label for the virtue theory perspective. In using these labels, the care theorist may be thinking of the principle of justice as an example of the longer list of moral principles that usually get cited in discussing theories of right action and thinking of care as an example of the longer list of virtues that get cited in virtue theory. If so, this could be confusing since, as we have seen, the principles of right action include not only the principle of justice, but other principles as well. Likewise, the virtues include not only the virtue of care, but other virtues as well. For example, if one held that the rule to always get consent before surgery should be applied rigorously, this could be called a “justice perspective,” even though it is the principle of autonomy rather than that of justice that is involved. Likewise, if the “care perspective” is a code label for the virtue perspective, then some virtue theories that rely on other virtues could get called a care perspective even though care is not the virtue involved. To summarize, care theory has taken on greater significance in the past decades especially in some health professions such as nursing. At different times different theorists may have different points to make—​that case-​by-​case decisions take precedence over rule application, that among virtues, care is the virtue or cluster of virtues that should prevail, and that between principles of right action and virtues describing praiseworthy traits of character, the virtues should prevail. Different care theorists may have any or all of these positions in mind.

Problems with Care Ethics Care ethics has been accused of not offering clear action guidance. If we take Ms. Kim’s predicament, it is not clear whether a care ethicist would say that she is justified in taking the medications from the hospital and covertly giving them to Mr. Flores. Her reasoning might be understandable, but is her plan justified? If she were only willing to bend the rules for Mr. Flores because of their friendship, then she would be allowing her personal bias to govern her actions and neglecting her obligation to care for all patients equally. But even if Ms. Kim demonstrates caring concern for all patients in a desperate predicament by stealing medications and supplies as necessary, these actions could end up costing the hospital in non-​ trivial ways over time, which could have unintended negative effects (for example, hospital administration might refuse to consider any special accommodations for undocumented patients when previously they were more amenable). If this were to occur, then is her decision to steal criticizable from a care perspective? Her caring relationship to Mr. Flores is directly tied to her professional role, and there are constraints on what actions can be done within that role.While Ms. Kim could

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have an obligation to advocate for Mr. Flores to the best of her ability, how can she know what the limits of her caring relationship are? When care ethics is proposed as a comprehensive moral theory, it runs into the objection that too much in moral life is being neglected by an overemphasis on care. Moral interests and moral obligations are, arguably, not reducible to care-​related concerns. Care ethics might only be applicable within the domain of intimate human relationships, but then a different theory would be needed to make sense of duties to strangers, the environment, other creatures, and the rest of humanity. There are also deep concerns that care ethics valorizes norms of self-​sacrifice, which have been traditionally associated with women in their roles as mothers, spouses, and caregivers. Care ethics thus runs the risk of perpetuating gender stereotypes. If self-​sacrifice is not supposed to be an implication of this approach, then what are the limits of care? Is it ever permissible to choose against continued attachment, to choose not to care? When is care not deserved or warranted? The intimate perspective within a relationship can be distorting, and a more detached view can be helpful for answering these questions. There are instances where it seems even obligatory not to care any longer, for example out of obligations to oneself. If care ethics is a complement to another theory or method of moral reasoning, then it can handle these challenges better.

Key Concepts Androcentrism A  set of beliefs and practices that explicitly or implicitly take male/​masculine experiences and perspectives as primary or most important. Beneficence The principle that holds that actions are morally right insofar as they produce as much or more benefit than alternative actions. Benevolence The virtue involving a persistent disposition to will the good. Care Ethics A  theory, orientation, or cluster of virtues that is focused on relationships and attachment. As a virtue, care involves a persistent disposition to be concerned about others, related to but sometimes distinguished from the virtues of benevolence, love, compassion, faithfulness, humaneness, and tenderness. As a theory or orientation, it focuses on the intimate ties in relationships and rejects the mere application of abstract rules. Casuistry A  method where new cases are analyzed according to the relevant features they have in common with paradigm cases, so analogical reasoning can reveal to what extent the new case should be decided along similar lines as the paradigm case. Feminism A philosophy that is centered on eliminating sexism, so people of all sexes and genders can be equal in private and public spheres of life. Feminism in bioethics aims to show the ways in which traditional thinking on moral problems

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in healthcare can be exclusionary or otherwise harmful to women and other marginalized persons; see Androcentrism, Relational View of Autonomy/​Agency. Intersectionality The theoretical framework that is based on the notion that social identities consist of sex, gender, race, class, sexual orientation, disability, and other categories of power/​disempowerment. Naked Virtue Problem The problem in healthcare ethics of concentrating on promotion of virtue as a means to increasing the probability that persons will engage in morally right conduct without also instituting methods for explicating, facilitating, and monitoring the conduct through the use of codifications of moral rules, ethics consultation, and collegial monitoring of behavior. Narrative Ethics An approach to moral problems that focuses on contextual particulars and analyzes the interpretative meaning that is shared in dialogue with others in the telling and retelling of stories. Particularism See Situationism/​Particularism. Phronesis The capacity for practical wisdom, which consists of deliberating about the good in the right way, which was necessary for the practice of virtue according to Aristotle. Reflective equilibrium The endpoint of a process where someone reasons back and forth from considered judgments about cases to rules or principles or metaethics that are supposed to guide the judgments, the aim being to revise as needed so that theoretical commitments and judgments about cases align coherently (see endnote 1). Relational View of Autonomy/​Agency The view that human agency and autonomy are socially situated, and relationships with others are necessary for building and acting on these capacities; see Feminism. Rules-​of-​Practice The view that rules define moral practices. Such rules mediate between abstract ethical principles and individual case-​by-​case judgments by providing firm positions. The rules-​of-​practice view is not normally amenable to the application of ethical principles directly to case judgments. Situationism/​Particularism The view that moral rules mediate between abstract ethical principles and individual case-​by-​case judgments by providing “rules-​of-​thumb” or guidelines rather than more rigid exceptionless rules or rules-​of-​practice. Virtue A persistent disposition or trait of good character. Wrong Virtue Problem The problem that arises in virtue theory from promoting virtue without adequate attention to which virtue is being promoted.

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Bibliography Virtues Amundsen, Darrel W., and Gary B. Ferngren. “Virtue and Medicine from Early Christianity Through the Sixteenth Century.” In Virtue and Medicine, ed. Earl E. Shelp. Dordrecht: Reidel, 1985, pp. 23–​61. Aristotle. Nicomachean Ethics. New York: Oxford University Press, 2009. Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics, 7th ed. New York: Oxford University Press, 2013. Campbell,Alastair.“AVirtue-​Ethics Approach.” In Case Analysis in Clinical Ethics, ed. Richard Ashcroft, Anneke Lucassen, Michael Parker, Marian Verkerk, and Guy Widderhoven. New York: Cambridge University Press; 2005, pp. 45–​56. Carse, Alisa L. “The ‘Voice of Care’:  Implications for Bioethical Education.” Journal of Medicine and Philosophy 16, No. 1 (1991): 5–​28. de Raeve, Louise. “Virtue Ethics.” In Essentials of Teaching and Learning in Nursing Ethics: Perspectives and Methods, ed. Anne J. Davis,Verena Tschudin, and Louise de Raeve. New York: Churchill Livingstone Elsevier, 2006, pp. 97–​108. Drane, James F. Becoming a Good Doctor: The Place of Virtue and Character in Medical Ethics. Kansas City, MO: Sheed & Ward, 1988. Edwards, Steven D. “Three Versions of an Ethics of Care.” Nursing Philosophy 10, No. 4 (2009): 231–​240. Ferngren, Gary B., and Darrel W.Amundsen.“Virtue and Health/​Medicine in Pre-​Christian Antiquity.” In Virtues and Medicine, ed. Earl E. Shelp. Dordrecht: Reidel, 1985, pp. 3–​22. Gilligan, Carol. In a Different Voice: Psychological Theory and Women’s Development. Cambridge, MA: Harvard University Press, 1982. Grypdonck, Maria. “Ethics of Care, Asymmetry, Recognition and Pity in Nursing Care.” Nursing Ethics 15, No. 2 (2009): 274–​275. Hamric, Ann B., John D. Arras, and Margaret E. Mohrmann. “Must We Be Courageous?” Hastings Center Report 45, No. 3 (2015): 33–​40. Hauerwas, Stanley M. Vision and Virtue. Notre Dame, IN:  University of Notre Dame Press, 1981. Hauerwas, Stanley M. “Virtue and Character.” In Encyclopedia of Bioethics, 3rd ed., ed. Stephen G. Post. New  York:  Macmillan Reference USA, Thomson/​Gale; 2004, pp. 2550–​2556. Holland, Stephen. “The Virtue Ethics Approach to Bioethics.” Bioethics 25, No. 4 (2011): 192–​201. Jecker, Nancy S., and Warren Thomas Reich. “Care: III. Contemporary Ethics of Care.” In Encyclopedia of Bioethics, 3rd ed., ed. Stephen G. Post. New York: Macmillan Reference USA, Thomson/​Gale, 2004, pp. 367–​374. Lebacqz, Karen,“Patients’ Responsibilities: II.Virtues of Patients.” In Encyclopedia of Bioethics, 3rd ed., ed. Stephen G. Post. New York: Macmillan Reference USA, Thomson/​Gale, 2004, pp. 1992–​1994. MacIntyre, Alasdair. After Virtue. Notre Dame, IN: University of Notre Dame Press, 1981. McCullough, Laurence B. “Virtue, Etiquette, and Anglo-​ American Medical Ethics in the Eighteenth and Nineteenth Centuries.” In Virtue and Medicine:  Exploration in the Character of Medicine, ed. Earl E. Shelp. Dordrecht: Reidel, 1985, pp. 81–​92. Noddings, Nel. Caring:  A Feminine Approach to Ethics and Moral Education. Berkeley, CA: University of California Press, 1984.

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Oakley, Justin. “Virtue Theory.” In Principles of Health Care Ethics, 2nd ed., ed. Richard E. Ashcroft, Angus Dawson, Heather Draper, and John R. McMillan. Chichester, West Sussex and Hoboken, NJ: John Wiley and Sons, 2007, pp. 87–​91. Oakley, Justin. “A Virtue Ethics Approach.” In A Companion to Bioethics, 2nd ed., ed. Helga Kuhse and Peter Singer. Chichester and Malden, MA:  Wiley-​Blackwell, 2009, pp. 91–​104. Pellegrino, Edmund D. “Character Formation and the Making of Good Physicians.” In Lost Virtue: Professional Character Development in Medical Education, ed. Kenny Nuala and Wayne Shelton. Amsterdam and Oxford: Elsevier, 2006, pp. 1–​15. Pellegrino, Edmund D. “Professing Medicine, Virtue Based Ethics, and the Retrieval of Professionalism.” In Working Virtue:  Virtue Ethics and Contemporary Moral Problems, ed. Rebecca L. Walker and Philip J. Ivanhoe. Oxford: Clarendon, 2007, pp. 61–​85. Pellegrino, Edmund. D., and David C. Thomasma. The Virtues in Medical Practice. New York: Oxford University Press, 1993. Ross, W.D. The Right and the Good. Oxford: Oxford University Press, 1939. Shelp, Earl E., ed. Virtues and Medicine. Dordrecht, Netherlands: Reidel, 1985. Veatch, Robert M. “Resolving Conflict Among Principles:  Ranking, Balancing, and Specifying.” Kennedy Institute of Ethics Journal 5 (1995): 199–​218. Veatch, Robert M. “Character Formation in Professional Education: A Word of Caution.” In Lost Virtue: Professional Character Development in Medical Education, ed. Nuala Kenny and Wayne Shelton. Amsterdam and Oxford: Elsevier, 2006, pp. 29–​45. Walker, Rebecca L., and Philip J. Ivanhoe, eds. Working Virtue: Virtue Ethics and Contemporary Moral Problems. Oxford: Clarendon Press/​New York: Oxford University Press, 2007

Casuistry and Narrative Ethics Arras, John D. “Nice Story, But So What? Narrative and Justification in Ethics.” In Stories and Their Limits: Narrative Approaches to Bioethics, ed. Hilde Lindemann Nelson. New York: Routledge, 1997, pp. 65–​90. Arras, John D. “Principles and Particularity: The Roles of Cases in Bioethics.” Indiana Law Journal 69, No. 4 (1994): 983–​1014. Bouvia v. Superior Court, 179 Cal. App. 3d 1127, 225 Cal. Rptr. 297, 1986 Cal. App. LEXIS 1467 (Cal. App. 2d Dist. April 16, 1986). Brody, Howard. Stories of Sickness, 2nd ed. New York: Oxford University Press, 2003. Chambers, Tod. The Fiction of Bioethics: Cases as Literary Texts. New York: Routledge, 1999. Charon, Rita, and Martha Montello. Stories Matter: The Role of Narrative in Medical Ethics. New York: Routledge, 2002. Frank, Arthur W. The Wounded Storyteller, 2nd ed. Chicago, IL:  University of Chicago Press, 2013. In re Farrell, 108 NJ 335, 529 A.2d 404 (June 24, 1987). In re Quinlan, 137 NJ Super. 227, 348 A.2d 801 (November 10, 1975). Jonsen, A.R., and S. Toulmin. The Abuse of Casuistry. Berkeley, CA: University of California Press, 1988. Kuczewski, M. “Casuistry and Principlism: The Convergence of Method in Biomedical Ethics.” Theoretical Medicine and Bioethics 19, No. 6 (1998): 509–​524. Murray, Thomas. “What Do We Mean by ‘Narrative Ethics’?” In Stories and Their Limits:  Narrative Approaches to Bioethics, ed. Hilde Lindemann Nelson. New York: Routledge, 1997, pp. 3–​17.

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Nelson, Hilde Lindemann. Damaged Identities, Narrative Repair. New  York:  Cornell University Press, 2001. Nussbaum, Martha. Love’s Knowledge: Essays on Philosophy and Literature. New York: Oxford University Press, 1992.

Feminist Approaches Bartky, Sandra L. Femininity and Domination:  Studies in the Phenomenology of Oppression. New York: Routledge, 1990. Bordo, Susan. Unbearable Weight:  Feminism, Western Culture, and the Body. Berkeley, CA: University of California Press, 1993. Carse, Alisa L. “Vulnerability, Agency, and Human Flourishing.” In Health and Human Flourishing, ed. Carol Taylor and Roberto Dell’Oro. Washington, DC:  Georgetown University Press, 2006, pp. 33–​52. Crenshaw, Kimberle. “Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory, and Antiracist Politics.” In Feminist Legal Theory: Readings in Law and Gender, ed. Katharine T. Bartlett and Rosanne Kennedy. Boulder, CO: Westview Press, 1991. Donchin, Anne, and Laura M. Purdy. Embodying Bioethics: Recent Feminist Advances. Lanham, MD: Rowman & Littlefield, 1999. Guidry-​ Grimes, Laura K., and Elizabeth Victor. “Vulnerabilities Compounded by Social Institutions.” International Journal of Feminist Approaches to Bioethics 5, No. 2 (2012): 126–​146. Little, Margaret Olivia. “Why a Feminist Approach to Bioethics?” Kennedy Institute of Ethics Journal 6, No. 1 (1996): 1–​18. Mackenzie, Catriona, and Natalie Stoljar, eds. Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self. New York: Oxford University Press, 2000. Reiheld, Alison. “With All Due Caution:  Global Anti-​ Obesity Campaigns and the Individualization of Responsibility.” International Journal of Feminist Approaches to Bioethics 8, No. 2 (2015): 226–​249. Scully, J.L., L. Baldwin-​Ragaven, and P. Fitzpatrick. Feminist Bioethics: At the Center, On the Margins. Baltimore, MD: Johns Hopkins University Press, 2010. Sherwin, Susan. No Longer Patient: Feminist Ethics and Health Care. Philadelphia, PA: Temple University Press, 1992. Tong, Rosemarie and Tina Fernandes Botts. Feminist Thought:  A More Comprehensive Introduction, 5th ed. New York: Routledge, 2017.

Care Ethics Gilligan, Carol. In a Different Voice: Psychological Theory and Women’s Development. Cambridge, MA: Harvard University Press, 1982. Gilligan, Carol. “Moral Orientation and Moral Development.” In Justice and Care: Essential Readings in Feminist Ethics, ed.Virginia Held. New York: Routledge, 1995, pp. 31–​46. Little, Margaret Olivia. “Care:  From Theory to Orientation and Back.” The Journal of Medicine and Philosophy: The Chaos of Care and Care Theory 23, No. 2 (1998): 190–​209.

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Noddings, Nel. Caring:  A Feminine Approach to Ethics and Moral Education. Berkeley, CA: University of California Press, 1984. Ruddick, Sara. Maternal Thinking:  Toward a Politics of Peace. New  York:  Ballantine Books, 1989. Veatch, Robert M. “The Place of Care in Ethical Theory.” The Journal of Medicine and Philosophy: The Chaos of Care and Care Theory 23, No. 2 (1998): 210–​224.

6 PROBLEMS IN BENEFITING AND AVOIDING HARM TO THE PATIENT

LEARNING OBJECTIVES FOR THIS CHAPTER (1) Explain why definitions of benefit and harm are not simple, straightforward, or non-​controversial. (2) Analyze central problems with healthcare professionals trying to benefit the patient according to the professional’s own judgment. (3) Discuss how debates about beneficence and nonmaleficence relate to different interpretations of the Hippocratic ethic.

Historically, ethics for the healthcare professions has been dominated by the maxim of the Hippocratic Oath: Benefit the patient and protect the patient from harm. In later chapters we shall see that much of bioethics of the past generation has been devoted to questioning that it is always wise or morally appropriate to follow that maxim. We shall see that there are times when many believe it would be morally wrong to benefit the patient (e.g., when the patient has not consented to the benefit or when protecting from harm might involve intentionally killing the patient out of mercy). There are times when social concerns may legitimately challenge the healthcare professional who would try to do everything possible for the patient.

Complications in Determining What Benefits Patients Even if a healthcare professional decided to remain committed to the Hippocratic principle of benefiting the patient and protecting the patient from harm, he or she would still face some serious problems. Some of these problems are increasingly

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difficult to solve. Four areas of concern are particularly troublesome:  the subjective nature of the Hippocratic commitment, the trade-​offs that must be made between medical and other elements of personal well-​being, the different kinds of medical benefit that a healthcare professional might pursue, and different strategies for combining assessments of benefits and harms to reach a single course of treatment. Following the discussion of these four issues, we will need to confront the problem of paternalism to decide whether it is always morally right to benefit the patient.

Subjective versus Objective Estimates of Benefit and Harm First, if a healthcare professional is to be Hippocratic and work only for the welfare of the patient, he or she must face the problem of whether to rely on subjective or objective assessments of benefit. A judgment of benefit is subjective if it is based on the perspective of the one who is making the assessment. On the other hand, a judgment can be considered objective if it would be true regardless of who was making it. There is considerable dispute over whether valuative judgments (such as judgments about whether something is a good or a harm) can be thought to be objective at all. Some people believe that, by their very nature, value judgments are always subjective. They might define the “good” as “desired by the speaker” or as “preferred by the speaker.” Others believe that at least some values are objective, that certain states are good or bad independent of anyone making the assessment. If we believe that some value judgments, including some medical value judgments, can be objective, we might seek to discern what is truly a good outcome.We might do this by trying to eliminate or at least neutralize biases and special perspectives when we decide what a good outcome would be. We might do this, for example, by involving many different people in the assessment, by using the consensus of a large group of people rather than relying solely on the judgment of an individual physician about what counts as a good outcome. For our purposes, the important point is that there are different ways of assessing how good or bad an outcome is. If we are striving to determine what is objectively good, we will probably use a different method of assessing than if we are striving to determine the good subjectively. In the case of subjective assessments, in medicine we have traditionally relied on the physician’s judgment, but, as we shall see later, we might also consider the judgment of the patient or some other party.

CASE 10 THE PHYSICIAN WHO FAVORS HYSTERECTOMIES Dr. Morton Westerman is a gynecologist who has been in practice for 30 years. He sees an ambiguous pap smear with some abnormal cell development, something that he has seen for 30 years. In such cases his rule is: When in

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doubt, do a hysterectomy. Recently his professional peers have done studies that reveal that there is no documented evidence that a hysterectomy does any good in these circumstances. But Dr. Westerman has been in practice for a long time, and his gut feeling is that it is better for this woman to have a hysterectomy—​better to be safe than sorry. The Hippocratic Oath says that the physician is to benefit the patient according to the physician’s ability and judgment. Based on this interpretation of it, Dr.  Westerman believes that, even if his colleagues disagree with his clinical judgment and have an abundance of empirical studies and data to support their position, it is his moral duty to do what he thinks is beneficial. Should he follow his own judgment or that of his peers?

The view that the physician should decide on the basis of subjective criteria grounded in his or her own judgment is increasingly hard to defend today. In fact, Dr. Westerman could be sued for malpractice for doing a hysterectomy that none of his colleagues thinks is worth doing. The mere fact that he believes something subjectively is not enough to settle the matter. One can refer to the approach in which the physician bases a decision about patient benefit on his or her own judgment as subjective Hippocratic utility. Utility refers to assessments of benefit and harm. The principle of utility holds that an action is morally right insofar as it increases net utility—​that is, the net amount of good, taking into account the harm that may be done as well. Sometimes the benefits and the harms are considered separately, and we then refer to the principles of beneficence and nonmaleficence (that actions are, respectively, morally right insofar as they increase the good and avoid harm). Beneficence is the philosopher’s word that simply means doing the good. Nonmaleficence means avoiding doing harm. Taken together we can speak of utility. Subjective Hippocratic utility, then, is based on the clinician’s individual judgment. Figure 10 shows that the principles of bioethics can be formulated with two dichotomous variables. The two columns of the chart represent the fact that some ethics are consequentialist (meaning they focus on producing benefits and avoiding harms, doing good and avoiding evil), whereas others are duty-​based (i.e., they hold that some actions are morally required as one’s duty regardless of the consequences). This latter group of ethics is sometimes called deontological ethics, which is a term derived from the Greek word for duty. The Hippocratic ethic is consequentialist in that it focuses on benefiting the patient. Both consequentialist and duty-​based ethics can apply either to the individual or to the society or community. Hippocratic utility is individual and consequentialist. The physician’s duty is to pay attention only to consequences, but only for the individual patient. The individual, consequentialist quadrant—​that is, the upper-​left quadrant of the two-​by-​two table—​is labeled Hippocratic utility. The original form

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Consequentialist Principles

Duty-based Principles

Subjective 1. Beneficence 2. Nonmaleficence Individual

– –Hippocratic Utility– – Objective 1. Beneficence 2. Nonmaleficence

Social

FIGURE 10  Where

Hippocratic Utility Fits in a Grid of Types of Ethical Principles

of Hippocratic utility is subjective. The clinician’s judgment is what counts. Increasingly, this emphasis on personal physician judgment is being replaced with a more objective form of Hippocratic utility in which judgment of outcomes is based on peer review, multidisciplinary collaboration, utilization review, quality assurance, outcomes research, and treatment protocols—​all examples of more collegial consensus about what the objective consequences of a particular treatment decision will be. If the consensus of his colleagues is that there is no evidence that a hysterectomy would have an effect on the patient, the more modern form of Hippocratic utility requires the clinician not to do the hysterectomy. He must be guided and influenced by the more objective data about outcomes. This is no major moral change. It is still consequentialist, and it still focuses on the individual patient. But now the clinician is no longer the sole arbiter of benefit. There is normally no reason to assume, according to this new view, that the individual physician’s judgment of benefit is right when his or her colleagues disagree. There is a remaining problem: Even if the community of clinicians can agree on an outcome, it must still evaluate whether the outcome is beneficial. Even if the determination of the outcome can be considered a matter about which the medical community has expertise and can strive to determine objectively, evaluating how good or how bad an outcome is turns out to be a different matter. What happens if the entire medical profession reaches a consensus about what is beneficial that conflicts with the convictions of other groups or individuals in the society? Physicians must not only estimate the outcome of the hysterectomy (the decrease in probability that the patient will develop uterine cancer), but also

112  Problems in Benefiting and Avoiding Harm

whether that decrease in the risk of cancer is worth the psychological and physical effects on the woman. Deciding how good it is to reduce the risk of cancer and how bad the side-​effects are involves value judgments. There is no reason to assume that the value judgments of the community of physicians are the correct ones. Maybe the physicians place unusually high value on reducing the risk of cancer or judge the side-​effects, such as the loss of reproductive capacity, to be less harmful than others in the society. Here an important distinction must be made. The claim that a hysterectomy is beneficial really involves two different kinds of propositions. First, it involves an empirical claim about medical science: that the operation will reduce the probability of the patient developing cancer of the uterus. That is a scientific claim about which we generally recognize an expertise. Physicians and other medical scientists are usually presumed to be more expert in judging such factual claims. It is these kinds of scientific claims about which objective evidence, peer review, and outcomes research are considered legitimate. But the claim that hysterectomy will benefit the patient also involves a second proposition: that the outcome of the surgery will produce a change that is beneficial. Sometimes the judgment that the outcome of medical intervention is beneficial may be obvious, but that is not always the case. For example, a hysterectomy has the potential not only to reduce the risk of cancer developing, but also can have profound side-​effects—​leaving a woman unable to bear children, potential damage to nerves associated with sexual pleasure, and producing potentially serious psychological effects. Deciding that these side-​effects are justified by some reduction in risk of cancer is not something medical science can determine. It is a value judgment pure and simple. It is not an issue about which physicians or other experts and medical science can be expected to be authorities. Thus, there are two separate questions at stake here. The first, determining the effects of the hysterectomy, is increasingly seen as requiring an objective standard. Recent years have seen a shift from a subjective basis rooted in the individual physician’s judgment to a more objective basis as articulated by a physician’s peers, in the scientific literature, and in the peer review process. The second issue is how people should go about making judgments about the value of the expected outcomes. One pattern has been a shift away from relying on the subjective value judgments of the individual physician in favor of more objective standards of evaluation, such as by relying on a consensus of medical experts. But simultaneously, critics are questioning whether even a community of clinicians can be relied upon to make these value judgments objectively. Even if peer review is gaining acceptance as the standard for making scientific determinations of outcomes, that peer review is increasingly questioned when it comes to making judgments concerning the value of the agreed-​upon outcomes. The patient’s own evaluation is increasingly given priority over either that of the individual clinician or that of the physician community as a whole. (For a full discussion of this problem, see Veatch, 2009.)

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Medical versus Other Personal Benefits There is a second problem. Is the goal really to promote the total well-​being of the patient? Or is the goal to promote only medical well-​being? Either way, there is a major problem for a physician. If the goal is total well-​being, no physician can be expected to be able to be skilled in all aspects of living well. Total well-​being involves all aspects of a person’s life: Education, religion, social relations, aesthetics, entertainment, and their professional goals, for example. But if the goal of the physician is medical well-​being, one has to recognize that no rational patient wants to maximize his or her medical well-​being. People have goals for well-​being that have nothing to do with their health. Health is an important goal, but not the only one. Sometimes marginal gains in medical well-​being can come at the price of serious losses in other spheres. Sometimes those small medical gains are simply not worth it to the patient. What should the physician do when patients say they understand that a certain behavior—​smoking or eating fatty foods or mountain climbing—​is not good for their medical well-​being, but that they nevertheless get such pleasure or meaning from it that the medical risks are justified? If the physician’s duty, following the Hippocratic Oath, is to promote the total well-​ being of the patient, he or she should recognize that determining what will maximize the patient’s total well-​being requires skill well beyond that of the ordinary healthcare professional. Patients may not need the physician’s medical skills to increase their well-​being; they may need a chef, an art critic, a book salesman, or a television repair person. In some cases they may even be willing to take some risks with their medical well-​being in order to promote their total well-​being. Suppose that the circle in Figure 11 represents total personal well-​being. This pie can be divided into several slices, or sub-​spheres, of well-​being. Let’s call one organic and another psychological. There are also legal, economic, religious, social, and aesthetic areas of well-​being, as well as others that are grouped in one sub-​sphere. According to the Hippocratic formula, the physician’s duty is to promote the total Social

Economic

Organic

Religious

Other

Aesthetic FIGURE 11  The

Psychological

Spheres of Well-​being

Legal

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well-​being of the patient. But that is an unrealistic demand in light of the skills that physicians and other healthcare professionals possess. No one pretends that a physician will be an expert on aesthetic, religious, and economic well-​being as well as medical. On the other hand, if a physician focuses only on organic well-​ being, he or she is obviously attending to only one area of the patient’s concerns.1 It becomes increasingly clear that it would be irrational for the patient to always maximize one sector of this pie at the expense of the others. At first, one might be inclined to reject this conclusion. We sometimes think we need to follow the physician’s recommendation about what will maximize our health in order to be able to enjoy any other spheres of well-​being. But that really is not true. Consider a person who is diagnosed as suffering from diabetes. Imagine what a physician would recommend if she were committed to doing literally what was medically best for the patient. The absolutely best course might include an impossibly strict diet, a terribly disrupting exercise program, frequent monitoring of blood sugar, and perhaps multiple daily injections of insulin to maintain tight control. Now a rational person would take these recommendations seriously and would try to comply with most of them most of the time. But no rational person would at all times follow what is literally the perfect diet; no one would monitor blood sugar quite as often as the best possible regimen. If the physician recommends what is absolutely the best possible course, the reasonable patient will perhaps come close to following those recommendations, but will back off a little from time to time in order to accomplish other valued experiences in life. The reasonable person will also be receiving advice from advisors in other spheres of life; from a lawyer, dentist, accountant, clergyperson, insurance agent, auto mechanic, and so on. If each recommended literally what was best in their sphere, the person would face impossibly complex demands—​ probably consuming more time than is available in a day. Moreover, no obviously correct formula exists for exactly how much one should back away from the recommended course for making one’s life “best” in each sphere. One thing is clear, however: No person will lead an ideally perfect life in any sphere if the goal is to maximize overall well-​being rather than merely well-​being in one sphere. It is the patient’s job to balance these spheres against one another so that the total size of the pie, or total well-​being, is as large as possible. In contrast to the Hippocratic Oath, members of the World Medical Association pledge in the Declaration to hold the health of their patients as their first consideration. The problem here is that if they focus on only one piece of well-​being, they have to recognize that rational patients will trade off that piece against all the others. The total resources a person needs to maximize well-​being in all spheres are going to exceed the total available. The rational patient will have to conclude that the advice given by a physician targeted on maximizing health is advice that ought not to be followed completely. Whether the goal is medical well-​being or total well-​being, all professional advisors have to realize that rational patients should not follow professional advice completely.

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Conflicting Goals within the Medical Sphere A third problem that Hippocratic physicians will face is deciding what counts as a benefit within the medical, or organic, sphere. Even if we accept the position that the physician’s duty is to focus on medical benefits, no consensus exists about what counts as a medical benefit. The notion of medical benefit turns out to be incredibly vague. As seen in Figure 12, there are no fewer than four different goals that a physician or a patient may want to pursue. Before about 1960, the gold standard was that the purpose of medicine was to preserve life. It had not always been that way, but for most of the twentieth century that was the goal. On this basis, keeping oxygen flowing into a permanently unconscious patient like Jahi McMath’s lungs would count as a benefit. This notion had become controversial by the late 1960s. In addition to preventing death, medicine strives to cure disease, relieve suffering, and promote the well-​being of the patient. The problem is that sometimes one cannot accomplish all four of these goals in a given patient at the same time.The only way to relieve suffering in the metastatic cancer patient with pneumonia may be to withhold the penicillin and let the patient die. The goal of preserving life has not been achieved, but the goal of relieving suffering has. No definitive way exists to combine all four of these goals of medicine into a single all-​purpose goal that will indicate definitively what the healthcare professional ought to do for each patient. Some may see it one way; some another. Different physicians will balance these goals differently just as patients will. Even if there are objective facts upon which a physician must base judgments about possible outcomes of treatments, there may be no such thing as an objective, factual way to determine which types of benefits to pursue or no definitive way to correctly balance these four competing medical goals.

Ways to Balance Benefits and Harms Even if the decision-​maker determines whether to pursue subjective or objective benefits, whether to pursue total well-​being or only medical, and which medical Preserve Life Promote Health Relieve Suffering Cure Disease

FIGURE 12   Elements

of Medical Well-​being

116  Problems in Benefiting and Avoiding Harm

goals deserve priority, there is still a fourth problem in assessing benefits. For each possible intervention alternative, the benefits and harms have to be combined in some way (at least by rough intuition) into a single estimate so that the clinician and patient can attempt to do that which produces the best outcome. But there is no single definitive way for these benefit and harm estimates to be combined. At least three major possibilities exist.

Bentham and Arithmetic Summing Jeremy Bentham was a late eighteenth-​ century philosopher who is often considered the father of utilitarianism, the moral philosophy that is committed to the view that the correct action or rule is the one that produces the best consequences. Classical utilitarianism is like Hippocratic ethics, except that, while Hippocratic utility focuses only on the individual patient, classical utilitarians would consider the effects on all parties. Classical utilitarianism is thus a type of social consequentialism. Its proponents often put forward a specific method of calculating net benefits (sometimes called utilitarian or Benthamite “calculus”). Bentham proposed that a decision-​ maker should consider the amount of benefit to each person affected and then the amount of harm. The envisioned harm should then be subtracted from the benefit to reach a net figure for that individual. After repeating this calculation for each person affected, the individual numbers should be summed to get an overall estimate of the effect of that option. This approach is impartial through this process; it must account for the consequences to all affected parties, and the personal preferences of the one doing the calculation should not skew the results. Then the whole process should be repeated for every alternative course being considered—​for example, every treatment option. The decision-​maker morally ought to choose the option with the greatest net aggregate good consequences. In one form of Hippocratic medicine, the same process of combining estimated benefits and harms is undertaken, except that the estimate is made only of the net benefit to the individual patient. Properly speaking, this should be undertaken after deciding whether it is medical good or total good to be estimated and after deciding what counts as medical good. The method used in each case is adding and subtracting. Hence, the approach is referred to as “arithmetic.”

Comparing the Ratio of Benefits to Harms Adding and subtracting is not the only way one could determine what course is the most beneficial. Some would prefer to compare ratios of benefits to harms. Consider the following problem faced by a physician who is contemplating placing her patient into a randomized clinical trial of a new chemotherapeutic combination for her patient’s cancer.

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CASE 11 RISKS AND BENEFITS IN A RANDOMIZED CLINICAL TRIAL Dr.  Sally Satherwaite had cared for Jerome Jenkins for some years. He had been diagnosed with cancer of the prostate two years ago. Dr. Satherwaite was in contact with the Oncology Center of a nearby teaching hospital, which had offered to place Mr. Jenkins in a randomized clinical trial. If he entered the trial he would be placed in either the standard treatment (control) group or the group given an experimental combination of potent new agents. The standard treatment posed only minor risks, but, unfortunately, offered only modest benefits. Two-​year survival rates were as low as 3 percent. Based on this information, Dr. Satherwaite figured that the benefits were nonetheless greater than the risks—​perhaps two times as great. If she had only the standard treatment available, she would recommend it to Mr. Jenkins. The experimental agent was more promising. Preliminary data showed better two-​year survival rates, perhaps ten times as great. Unfortunately, the side-​effects were also greater, she estimated about ten times as bad as the standard treatment. Mr. Jenkins asked her for her recommendation about whether to enter the trial.

On the basis of Dr.  Satherwaite’s estimates, the standard treatment has an expected benefit that is twice the expected harm (considering both severity and probability). But so does the experimental treatment.The clinician could view this as a choice between two options, which, if we used some imaginary unit of benefit and harm, could be said to offer the choice presented in Figure 13. One choice has a benefit of 2 and harm of –​1.The other choice has a benefit of 20 and a harm of –​10. Of course, these are only rough intuitive estimates, but often that is all the bedside clinician has to go on. If Dr. Satherwaite follows Bentham’s method of calculating, subtracting harms from benefits in each case, she reaches the surprising conclusion that the standard treatment has a net good of one while the experimental treatment has a net good

Standard

Experimental

Benefits

2 units

20 units

Harms

1 unit

10 units

FIGURE 13   High-​Risk/​High-​Gain

versus Low-​Risk/​Low Gain Therapy Choices

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of ten. In general, when comparing high-​r isk/​high-​gain options with low-​r isk/​ low-​gain ones, the difference between plausible alternatives will be greater in the high-​risk/​high-​gain option. Bentham’s arithmetic combining has the surprising effect of tending to favor more aggressive interventions. Dr. Satherwaite would probably urge Mr. Jenkins to enter the trial with the hope of getting the experimental treatment. She might even try to get it for him off protocol so he does not have the risk of being randomized to the standard treatment. However, Dr.  Satherwaite might try to integrate her estimate in a different way. She could calculate the ratio of benefits to harms in each case. Strikingly, she would find that the ratios of benefit to harm for the two options are the same. She would presumably be at the “indifference point” (the point at which she had no basis for favoring one treatment or the other) and, since she has no basis for preferring one or the other options, might endorse entry into the trial on a randomized basis. It is when benefit/​harm ratios of treatment options seem the same that many consider the randomized trial to be morally acceptable. Likewise, many health planners attempt to arrange limited health resources so as to maximize the ratio of benefits to harms. Because it uses ratios, this method of combining benefits and harms is sometimes called “geometric.” (This method of allocating scarce resources will be discussed further in Chapter 12.) Finally, we should note that we also need to take into account the subjectivity of benefits and harms. It could be that Dr.  Satherwaite’s patient quantifies the amounts of benefit or harm differently than Dr.  Satherwaite does. Since these evaluative judgments are often seen as subjective, it would not be irrational or a mistake if the patient saw the amount of benefit or harm somewhat differently. In that case, the patient could have a reasonable preference for one of the two treatments even if Dr. Satherwaite (and the community of physician/​researchers) were indifferent between the two options. Today, the patient generally has a legal right to the standard treatment (by refusing to enter the randomized trial), but usually does not have a right to the experimental option even if he or she has correctly determined that the net benefit or the ratio of benefit to harm supports that choice.

First of All, Do No Harm There is still a third possibility for combining benefits and harms that is even more conservative than using ratios. The folk ethics of physicians often includes the slogan primum non nocere or “first of all, do no harm.” It is a slogan popular among physicians and is meant to address problems of comparing benefits and harms of alternative treatments. It gives priority to avoiding harms. Often it is presumed to come from the Hippocratic Oath, but, as we have already seen, all the oath says is to benefit and do no harm; a coordinating conjunction indicates no priority for avoiding harm. Those who have looked for the origins of this slogan cannot find it prior to the nineteenth century, at which time medicine began to realize that

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sometimes physicians’ interventions caused harm rather than good (Jonsen, 1978; Sandulescu, 1965;Veatch, 1991). A recent publication claims that it dates back only to 1860 (Smith, 2005), a time when physicians were beginning to realize that their treatments (such as bloodletting and mercury tablets) often hurt patients severely. Giving priority to avoiding harm, clearly, is the most conservative of all the methods of combining benefits and harms. It implies pursuing good for the patient only if one has ruled out the possibility of harming. If she chose this method of combining benefits and harms, Dr. Satherwaite would have a clear preference for the standard treatment. She would direct her attention to the second line of the table in Figure 13, paying attention to minimizing the amount of harm. In fact, taken to the extreme, she would not even recommend the standard treatment, since it would pose the risk of at least some harm. Locking oneself in the office and never doing anything would guarantee that no harm would be done. Of course, much good would be forgone as well. Perhaps what some who invoke the primum non nocere slogan mean is that the physician should intend no harm. That would at least be more plausible than an instruction to do no harm.This is part of the idea behind what is sometimes called the doctrine of double effect, a notion we shall discuss in Chapter 8. If that is what is meant, it is quite different from the injunction to do no harm; much harm can be done even if it is not intended.The doctrine of double effect holds that harms may even be foreseen and still be morally tolerable provided they were not intended. Surgeons, for example, can foresee that they will cause patients pain at a surgical incision although they would resent it if they were accused of intending the pain. We are left with the question of whether a physician can ever be permitted to do harm in the process of doing good for patients and, if so, how one ought to combine the benefits and the harms: whether one should look at the arithmetic result, calculate ratios, or give an absolute priority to avoiding harm. None of these methods of combining benefits and harms is obviously the correct one. Different physicians and patients with different risk aversiveness will use different methods. It seems that, even if the data with which physicians can predict outcomes could be made more or less objective through peer review, there is, in principle, no way that quantifying benefits and harms and combining those into an integrated estimate of the value of alternatives can be made objective. In such cases, a critical question is whether it is the physician’s judgment that should count rather than the judgment of the professional group, the larger social community, or the individual patient.

The Problem of Medical Paternalism In addition to the practical problems of identifying which types of benefits and harms count and how they should be compared, a serious moral issue raised by the Hippocratic ethic has come to light in the current generation of medical ethics. We have seen that there are good reasons why the typical physician, especially one

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who does not know the patient well, ought not to be able to figure out what will benefit the patient. If different people have different values and priories, it would be expecting too much for even a very talented and dedicated physician to be able to figure out what will really promote the patient’s well-​being the most. But even if the physician can succeed in that difficult task, there still remains a problem.The Hippocratic ethic, even at its best, is paternalistic. Paternalism, as we saw in Chapter 1, is an action taken to benefit a person and done for the welfare of that person, but against his or her will or otherwise without consent. It should not be assumed that all paternalistic actions are necessarily immoral. Most people, for example, favor some instances of what is often called “soft” paternalism, that is, paternalism regarding persons who are not (or may not be) mentally capable to make substantially autonomous choices—​small children, those with profound intellectual disabilities, and the incapacitated, for example. Moreover, even among those who usually find “hard” paternalism (i.e., paternalism toward those who are substantially autonomous) morally troublesome, there may be overriding considerations that could justify it. The Hippocratic Oath tells the clinician, whether using his own personal judgment or that of peers, to do what appears to benefit the patient. The oath does not require the patient to be in agreement. In fact, the patient may not even want the benefit offered. Other ethical systems have other principles that move beyond consideration of the consequences to the patient. These other principles may require that physicians, in some circumstances, refrain from trying to benefit the patient. One such principle is the principle of autonomy, which requires respecting the patient’s right to be self-​determining. Medical paternalism is rampant in the old Hippocratic tradition. The healthcare professional was instructed to do what is beneficial according to his ability and judgment. It did not factor in benefit based on the patients’ judgment of what was good. It did not consider the possibility that the patient might have a right to choose even if that choice did not produce the most good for the patient. The Hippocratic Oath says that the physician should benefit the patient and protect him or her from harm. However, scholars have asked, “What is this harm with which the Hippocratic position is concerned?” Some suggested that it was harm instigated by enemies. In Greek medicine, occasionally an enemy of the patient would bribe a physician to prescribe a medicine for the patient that was actually a poison. But it is not a great moral insight if the Hippocratic tradition merely requires that one not take bribes from the patients’ enemy in order to poison the patient. In fact, there is no historical evidence that this is what the Hippocratic author meant. Another possibility is somewhat more promising. Sometimes the Hippocratic Oath is interpreted to mean that patients may have family and friends that come around in a time of illness who mean well, but actually do more harm than good. Remember the view of knowledge in the Pythagorean system: Well-​ meaning, uneducated do-​gooders may do more harm than good. So when lay people gather around the patient and start to make recommendations, it is the

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physician’s duty, according to this interpretation, to make sure they do not harm the patient unintentionally. That at least makes a little more sense, but there is no evidence that that is what the Hippocratic writer meant, either. Edelstein (1967) believes that what the Hippocratic author meant was that the physician’s duty is to protect patients from harm that patients may do to themselves. Remember, on the Hippocratic view the patient is ignorant; he or she does not have the knowledge that comes with initiation into the cult (refer back to Chapter 2 for more on the Hippocratic Oath). The best interpretation of the Hippocratic Oath was that the physician’s duty was to protect patients from themselves. Even if one shifts to a more objective standard of what counts as a benefit by using peer review, one still may end up being paternalistic. The peers may not reach the same conclusion about the hysterectomy that the patient reaches. And to the extent that modern bioethical thought is skeptical about paternalism, problems will arise in taking the Hippocratic Oath at face value. To get us oriented toward the alternative to Hippocratic beneficence, consider the following case that arose in 1970 just as birth control began to be widely used and medical paternalism emerged as problematic. It is a case that changed the history of medical ethics, at least in the Anglo-​American West.

CASE 12 IS BIRTH CONTROL BAD FOR ONE’S HEALTH? In 1970, Dr. Robert Browne, a kindly, 63-​year-​old British general practitioner, had been the family physician of a 16-​year-​old young woman since her birth. This young woman thought she should get some contraceptive counseling. She realized that Dr. Browne might not look too favorably upon this plan, so she went to a place called the Birmingham Brook Advisory Centre. This was a local birth control counseling clinic. She got contraceptive counseling, a physical examination, and a prescription for oral contraceptives. It is standard medical practice to inform a family physician if one writes a prescription for someone who normally sees another physician. The clinic’s physician asked if he could notify her physician, Dr. Browne. Perhaps without thinking, she gave her approval. Dr. Browne received in the mail, unsolicited, a letter informing him that his patient was on the pill. Dr. Browne expressed two concerns. First, he was concerned about her pharmacological well-​being. In 1970 the pill had not been on the market very long. Nobody understood what the effects might be, especially in a 16-​year-​old. But he was also worried about her total well-​ being; in particular, about what he called her “moral health.” Dr. Browne consulted with some colleagues, got their advice, and finally came up with a plan. One day when the young woman’s father was in the doctor’s office, Dr. Browne told him the whole story.

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The young woman was not pleased with this turn of events. The clinic physician was not pleased either. Dr. Browne was charged before the General Medical Council in Great Britain with the violation of patient confidentiality (“General Medical Council,” 1971). Dr. Browne in his defense introduced two documents:  the Hippocratic Oath and the British Medical Association (BMA) code. The oath says that the physician should not disclose “that which should not be spread abroad.” That, in turn, has traditionally been interpreted as confirming the core Hippocratic principle, that his moral duty is to do what he thinks will benefit the patient. Likewise, the BMA code explicitly permitted disclosures when doing so was believed to be for the benefit of the patient. Dr. Browne, having struggled with his conscience and consulted with colleagues, claimed he did what he thought was best for his patient. He may have had an archaic view about what would benefit her, but he really believed that this was the most beneficial course. Should the General Medical Council exonerate him?

Dr.  Browne was acquitted of any violation of the British standard of confidentiality. He followed both the Hippocratic Oath and the British medical code. If he had been an American physician, he could have consulted the American Medical Association code in effect at the time. This code was consistent with the Hippocratic Oath and British code: The physician’s duty was to keep confidence with certain exceptions, including when the physician believes that it is in the patient’s interest to disclose. The current generation of bioethics has seen a dramatic move away from Hippocratic paternalism toward a new set of principles, based on duty rather than maximizing good consequences for the patient.2 When dealing with the individual patient, these principles involve respect for autonomy, fidelity to promises, veracity, and sometimes, the duty of avoiding killing. Sometimes they are collected together under the heading “respect for persons.” These duty-​based principles give physicians much less leeway to act paternalistically. Together they offer an alternative to Hippocratic beneficence when dealing at the level of the individual. In the next chapter, we shall see how the first three of these principles affect the patient–​physician relation. The fourth, avoiding killing, will be the subject of Chapter 8.

Key Concepts Beneficence The moral principle that actions or practices are right insofar as they produce good consequences; cf. Nonmaleficence. Consequentialist Ethics Normative ethical theories that focus on producing good consequences; see Hippocratic Ethics; Social Consequentialist Ethics; Utilitarianism.

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Deontological (Duty-based) Ethics Any of a group of normative ethical theories that base assessment of rightness or wrongness of actions on duties or “inherent right-​ making characteristics” of actions or rules rather than on consequences; see also Formalism (Key Concepts, Chapter  4); cf. Duty-based Principles; Consequentialism. Duty-based Principles Ethical principles based on formal obligations to act in certain ways toward others regardless of the consequences. These are sometimes referred to as “deontological,” a term derived from the Greek term for duty. Among the deontological or duty-​based principles are fidelity, autonomy, veracity, and avoidance of killing (sometimes collectively referred to as the principles of “respect for persons”), as well as the social ethical principle of justice; see Deontological/​Duty-based Ethics; Justice (Key Concepts, Chapters 4 and 12). Hippocratic Ethics Consequentialist ethics that limits the relevant consequences to those that affect the individual patient. Nonmaleficence The moral principle that actions or practices are right insofar as they avoid producing bad consequences; cf. Beneficence. Objective Hippocratic Utility The principle that the physician should benefit the patient and protect the patient from harm as the benefits and harms are determined by standards that are objective rather than based on the physician’s personal judgments; cf. Subjective Hippocratic Utility. Paternalism Action taken to benefit another person done for the welfare of that person, but against his or her will or otherwise without consent. “Hard paternalism” involves taking such action even though the individual benefited is mentally capable; “soft paternalism” involves actions taken for the benefit of an individual who is either known to be mentally incapable or who is suspected of being so. Social (or Classical) Consequentialist Ethics Consequentialist ethics that include all consequences for all parties affected by an action; see Utilitarianism. Subjective Hippocratic Utility The principle that the physician should benefit the patient and protect the patient from harm as the benefits and harms are determined by the physician; cf. Objective Hippocratic Utility. Utilitarianism The normative ethical theory that is committed to the view that the correct action or rule is the one that produces the best consequences considering all parties affected; often limited to those forms of consequential ethics that envision calculations of anticipated benefits and harms by subtracting expected amount and probability of harm from expected amount and probability of benefit for each affected party and then summing the net benefits for all those affected; see Consequentialism, Social Consequentialist (or Classical) Ethics.

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Bibliography Bentham, Jeremy. “An Introduction to the Principles of Morals and Legislation.” In Ethical Theories: A Book of Readings, ed. A.I. Melden. Englewood Cliffs, NJ: Prentice-​Hall, 1967, pp. 367–​390. Edelstein, Ludwig. “The Hippocratic Oath: Text,Translation and Interpretation.” In Ancient Medicine:  Selected Papers of Ludwig Edelstein, ed. Owsei Temkin and C. Lilian Temkin. Baltimore, MD: Johns Hopkins Press, 1967, pp. 3–​64. “General Medical Council: Disciplinary Committee.” British Medical Journal Supplement, No. 3442 (1971): 79–​80. Jonsen, Albert R. “Do No Harm.” Annals of Internal Medicine 88 (1978): 827–​832. Kamm, F.M. Intricate Ethics:  Rights, Responsibilities, and Permissible Harm. Oxford and New York: Oxford University Press, 2007. Katz, Jay. The Silent World of Doctor and Patient. Baltimore, MD: Johns Hopkins University Press, 2002. Sandulescu, C. “Primum Non Nocere: Philological Commentaries on a Medical Aphorism.” Acta Antiqua Hungarica 13 (1965): 359–​368. Smith, Cedric M. “Origin and Uses of Primum Non Nocere—​Above All, Do No Harm!” Journal of Clinical Pharmacology 45 (2005): 371–​377. Veatch, Robert M. The Patient–​Physician Relation: The Patient as Partner, Part 2. Bloomington, IN: Indiana University Press, 1991. Veatch, Robert M. Patient, Heal Thyself: How the New Medicine Puts the Patient in Charge. New York: Oxford University Press, 2009.

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7 THE ETHICS OF RESPECT FOR PERSONS Lying, Cheating, and Breaking Promises, and Why Physicians Have Considered Them Ethical

LEARNING OBJECTIVES FOR THIS CHAPTER (1) Identify different obligations or principles that fall under respect for persons. (2) Explain the relationship between rights claims and obligations, including negative and positive rights. (3) Analyze ethical tensions that can arise in trying to respect persons while also satisfying other role-​specific obligations in healthcare. (4) Illustrate how the concept of autonomy can and should affect healthcare practices, such as when physicians are trying to obtain informed consent.

In the case at the end of the last chapter, Dr. Browne felt justified (and indeed was exonerated by the British General Medical Council) in breaking a confidence because he followed the Hippocratic dictum that the clinician should always act in a way that he or she believes will benefit the patient and protect the patient from harm. Reflection on cases such as this one has increasingly led critics of the Hippocratic ethic to doubt that the physician’s subjective judgment of patient benefit is the definitive standard for clinician action.The ethic focuses only on the welfare of the patient, that is, patient-​centered beneficence and nonmaleficence, excluding any consideration of the welfare of other parties. The problem of the interests as well as the rights of other patients is to be taken up in Chapter 12.The Hippocratic principle also poses problems even if we focus only on the individual patient. Increasingly critics are insisting that medical ethics must take into account duties and rights in the patient–​healthcare professional relation as well as benefits and harms. The general problem is one of whether sometimes an action can be morally wrong even if it produces good consequences.

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An ethic based on duty is increasingly replacing or supplementing one focusing exclusively on consequences. When that ethic focuses on duties to individuals it is often called an ethic of respect for persons. The ethics of respect for persons is one that derives to a great degree from the philosopher Immanuel Kant (1724–​ 1804). Kant stressed that it was important to treat persons as ends-​in-​themselves and not mere means. He affirmed the intrinsic and absolute value of persons, which means that persons cannot be traded off. Persons thus deserve respect independent of the consequences of actions. We show respect for them by observing certain duties toward them. The ethic of respect for persons, being a type of ethic based on duty, differs from ethics that focus on production of good consequences and avoiding evil ones. While consequentialist ethics determines what is morally right by examining the consequences of actions, an ethic of respect for persons considers certain behaviors simply to be one’s duty—​regardless of the consequences. If an action includes a lie, a broken promise, or a violation of another’s autonomy, then these features tend to make it morally wrong—​even if the consequences are good. Such an ethic focuses on the intrinsic nature of the action, its moral structure or form, and hence is sometimes called formalism. According to this view, actions (or sets of actions) are right or wrong, not based on the consequences they produce, but on their inherent content or form. Certain actions are simply one’s duty regardless of the consequences. Some people also call this kind of ethic deontological, derived from the Greek word for duty. Deontological or formalist approaches to ethics such as an ethic of respect for persons stand as a major alternative to ethics that decide what is morally right or wrong on the basis of consequences. In modern Western society those who emphasize more deontological or formalist approaches sometimes use the language of rights rather than duties, but, as we saw in Chapter 1, there is a close connection between the two. If one person has a right—​for example, a right to refuse medical treatment—​then other people have a reciprocal duty—​in this case, the duty to leave the individual alone when he or she refuses treatment. For a discussion of the “basics of bioethics,” we will present a shorter list of core principles (with the assumption that all of the UNESCO principles can be accounted for as specifications of this list). Figure 14 presents the top half of Figure 8 in Chapter 4 showing the ethical principles at the level of interactions between individuals. It shows the principles of ethic of respect for persons as an alternative to the Hippocratic ethic. The figure indicates four principles that are sometimes included under the rubric of respect for persons. The first is the principle of fidelity; that is, fidelity to commitments made in relations with others, to promises made and contracts to be kept. Anyone who feels some moral duty to keep a promise, even if the consequences are not the best, is reflecting this principle. But this is only one aspect of respecting persons. The second is the principle of autonomy. The notion of informed consent can be derived from this principle. Third is the principle of veracity, or simply the duty to tell the truth. The fourth, which we will take up in detail in Chapter 8, is the principle of

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Consequentialist Principles Subjective 1. Beneficence 2. Nonmaleficence Individual

– –Hippocratic Utility– – Objective

Duty-based Principles The Ethic of Respect for Persons 1. Fidelity 2. Autonomy 3. Veracity 4. Avoidance of Killing

1. Beneficence 2. Nonmaleficence

Social

FIGURE 14   Ethical

Principles at the Individual Level

avoidance of killing. In some religious systems, this is referred to as the sacredness of life or the ideal that life is precious and to be respected. Kant derived from that the idea that not only should one not kill other people, but even that one should not take one’s own life. So for Kant, suicide was prohibited because suicide was failing to show adequate respect for one’s own person, for one’s own life, or for failing to treat life as an end in itself. The ethic of respect for persons stands in contrast with the ethics of Hippocratic benefit. The problem was encountered in the case of Dr. Browne at the end of Chapter 6.The general form of the problem is that one course of action is believed by the physician to be most beneficial for the patient while another course, often expressed in terms of either rights or duties, appears to be morally required by some principle related to respect for persons. The cases are ones in which the clinician feels required to do something other than what he or she believes is the most beneficial course. Many people, when reflecting on Dr. Browne’s choice to disclose the use of contraceptives to the young woman’s father, believe he simply had a duty of confidentiality. Or to put it in other language that amounts to the same thing, the girl had a right to confidentiality. Whether duties or rights language is used, it conveys that Dr. Browne is obliged to do something other than merely do what he thinks will benefit his patient. This obligation appears to be related to the element of respect for persons that can be called the principle of fidelity.

The Principle of Fidelity and the Duty of Confidentiality The general idea of the principle of fidelity in the relationship between patient and healthcare professional is one of loyalty. A special type of relationship exists

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between a patient and each healthcare professional—​her physician, nurse, respiratory therapist, and others involved in her care. Each owes the other some loyalty. Feminists and care ethicists have emphasized the stark power asymmetry that exists between the patient and healthcare professional, since the patient is not only ill but also lacks the same access to resources and medical information. This means that the healthcare professional has special obligations to build a supportive and trusting relationship, which includes empowering the patient to the extent possible and making sure that the patient’s narrative is not lost or neglected.

Fidelity and the Notion of Loyalty Most attention is focused on the loyalty of the physician to the patient, but in some settings we are increasingly talking about the obligations or duties of loyalty of the patient to the physician as well (Benjamin, 1985). The troublesome cases are those in which keeping a commitment to the patient is not the way to produce the best consequences for the patient. Consequences incline one toward one action, duty another.

CASE 13 THE PROMISED INTERNSHIP A senior medical student, using the national matching program, is promised what she considers the perfect residency position. She receives and signs a contract for the position. But just before July 1, the day when residency programs begin, the physician/​administrator from the hospital calls and says, “I’m very sorry to tell you this, but we have found somebody we think will be better for our hospital and our patients. Even though you have excellent skills, this candidate is just exactly what we need. He has already done a clerkship in the area where we have special need. We’re sorry, but we won’t be able to accept you after all.” The medical student may feel she has a legal claim against the hospital. That may depend on the exact wording of the legal contract. But she may also feel she has been wronged morally. Given the traditional Hippocratic ethical notion that physicians have a duty to do what is best for their patients, the physician who administers the program claims that, regardless of the legal implications, he was merely doing what his professional ethics requires. Assuming the physician/​administrator really believed that the other person would be better for the patients of his hospital, does this medical student have any moral grounds for protest?

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Many would feel at that point that the medical student had been treated improperly. Something was promised, and the hospital’s administrators reneged. Anyone who has such a feeling has the idea of ethics of fidelity. Something was promised; a commitment was made. The general idea is that one owes something to the person to whom a promise has been made. Those who hold to the principle of fidelity claim that the mere fact that better consequences will result if one reneges on the promise does not necessarily justify breaking the promise. The striking thing about this case is that many feel like the hospital administrators owe something to this medical student even if the hospital’s patients really will be somewhat better off if the promise is broken. Fidelity gives rise to an independent duty to keep promises or contracts. This is an ethic that is particularly visible in classical Judeo-​Christian ethics. The ethic of contract or covenant keeping is the central motif of ancient Jewish ethics. This ethic of fidelity has carried into secular ethics of Immanuel Kant and others in the formalist or deontological tradition in the notion that there is reason to keep a promise simply because it is a promise.

The Ethics of Confidentiality The ethics of confidentiality is closely related to the principle of fidelity and the obligation to keep promises. Hippocratic and non-​Hippocratic ethics imply quite different promises about keeping medical information about patients confidential. They each permit some disclosures and prohibit others. It is important to understand the significant differences.

The Hippocratic Approach to Confidentiality The Hippocratic Oath commits the physician not to disclose “that which ought not be spread abroad.”This implies that some things may be spread abroad, perhaps even that some things should be.Thus, the Hippocratic tradition cannot be seen as unambiguously requiring that medical information be kept confidential. If one asks how to determine what should be spread abroad, the answer is found in the Hippocratic principle:  benefit the patient and protect the patient from harm. Hippocratic confidentiality is driven by beneficence. Whenever it will serve the patient’s good to keep information confidential, then it should not be disclosed. But, on the other hand, in the standard Hippocratic stance, whenever, according to the clinician’s judgment, disclosure would be better for the patient, the physician should release the information. Any confidentiality commitment is voided. That was also the ethic of the British Medical Association (BMA) before the Dr.  Browne case (the physician in Case 12 who disclosed his patient was take oral contraceptives). It was the position of the American Medical Association (AMA) until 1980. It remains the ethic of some codes such as that of the St. George’s University School of Medicine. That oath is essentially Hippocratic,

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saying, “all things seen or heard in the exercise of my profession, which ought not to be divulged, I will keep secret and will never reveal.” So far, that sounds like an oath or a promise for confidentiality. But then a final clause appears: “excepting for most weighty reasons.” If one interprets the “most weighty reason” to be the benefit of the patient, then it becomes Hippocratic. And given that many of the elements of the St. George’s oath are Hippocratic, it is open to this paternalistic interpretation. According to the Hippocratic interpretation, confidences should not be broken to benefit other people. For instance, if a patient were to acknowledge to a physician that child abuse had occurred, that information could not be disclosed (unless it was for the benefit of the patient making the disclosure), but the Hippocratic physician is free to disclose even against the wishes of the patient if some benefit to the patient were discerned.

Non-​Hippocratic Approaches to Confidentiality A number of codes have more rigorous confidentiality requirements. They prohibit disclosure even if the healthcare professional believes the breaking of confidence is to benefit the patient. One might ask,“Why shouldn’t a physician or other healthcare professional break confidence if he or she believes it would benefit the patient in the end?” Confidentiality, according to the respect for persons view derived from fidelity to commitments, involves more than patient benefit. The duty to keep medical information confidential is part of fidelity to the patient. A promise of confidentiality is, at least by implication, made when the relation is created.Views that find a duty of confidentiality that goes beyond patient benefit hold that there is a duty to keep confidences when confidentiality is promised. The World Medical Association (WMA) Declaration of Geneva is generally Hippocratic; it is a rewriting and modernizing of the Hippocratic Oath. On this issue, however, it breaks with the Hippocratic Oath. It gives a flat pledge of confidentiality promising to “respect the secrets confided in me.” No exception clauses are included. In 1971, just after the Dr. Browne case, the BMA rewrote its code to deal with cases such as Dr. Browne’s in which the physician believes it is in the patient’s interest to disclose confidential information to a third party. In 1971 it said that in such cases “it is the doctor’s duty to make every effort to persuade the patient to allow the information to be given to the third party, but where the patient refuses, that refusal must be respected.”1 Some codes that are more recent go beyond the Hippocratic Oath in requiring or permitting disclosure of confidential information, not to benefit the patient, but to protect others from serious harm. The BMA, for example, says that, according to its opinion, confidences may be broken when the law requires it or when the physician has an overriding duty to society. Depending on the jurisdiction, this might include the legal duty to report gunshot wounds, venereal or other

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infectious diseases, or a diagnosis of epilepsy. It is the physician’s obligation to make sure the patient understands that exception. An issue of controversy today is whether the law should require reporting of HIV diagnoses. Some jurisdictions require reporting; others do not.When a physician is facing a patient in whom tests for HIV are contemplated in a jurisdiction that requires reporting, fidelity to the patient requires mentioning the reporting requirement. A physician who is committed to practicing within the constraints of the law and who is practicing in a jurisdiction with a reporting requirement will have to disclose a positive diagnosis. If the patient at that point cannot continue the relation on that basis, he or she has the right to end it. The 2005 UNESCO Universal Declaration on Bioethics and Human Rights is unfortunately vague on the issue of confidentiality. Like the WMA, it offers no exceptions to the confidentiality requirement, but includes the statement that patient information should not be disclosed without patient consent “to the greatest extent possible.”That offers no opening to disclose to protect third parties, but seems to imply that sometimes withholding information might not be possible. If confidentiality is part of the ethics of promise-​keeping, what is crucial is what the clinician promises the patient. The corollary is that healthcare professionals should not promise more than they can deliver. Consider the following case in which a physician may imply too much to his patients.

CASE 14 THE CASE OF THE HUSBAND WITH SECRET AFFAIRS A family physician, Dr. Zane Abara, had seen Jim Park for years, even before Mr. Park married Janice Roberts. Ms. Roberts became a patient of Dr. Abara’s soon after the marriage, almost a year ago. On a Tuesday morning, Mr. Park came into the office while his wife was at work. Mr. Park began the conversation asking if he could tell Dr.  Abara something confidentially, to which Dr. Abara assured him without thinking too much about it that the doctor–​ patient relation was confidential. He told Dr. Abara that he believed he might have a sexually transmitted disease (STD) based on some recent symptoms. Mr. Park also revealed to his trusted physician that he had been having an affair for a number of months, and he was even taking her to Key West the following week. After a physical exam, Dr. Abara informed Mr. Park that he did likely have an STD, but he needed to run further tests to make sure. Mr. Park then asked, “All of this is just between us, right, doc? You can’t tell my wife.” Dr.  Abara began to realize he was facing a dilemma. If he followed the Hippocratic principle, it was his duty to do what he believed would be beneficial to the patient. In this case, the deceived wife was herself a patient who would benefit from knowing her spouse’s sexual plans and decisions. On the

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other hand, if he had promised confidentiality, it was his duty to his other patient, Mr. Park, not to disclose without the man’s permission. At this moment the physician found himself in a bind. He believed that Ms. Roberts was at some risk. First, he knew that her husband had a sexually transmitted disease, which he could spread to her without her knowing. Second, the physician was rather confident that Ms. Roberts was in the middle of a marriage full of deceit and broken promises, and it was likely headed toward divorce. Dr. Abara concluded it was his duty to Ms. Roberts to find out from Mr. Park whether his wife knew at all about his extramarital relations; if she didn’t, Dr.  Abara would urge Mr. Park to inform her. He might be lucky and discover that she already knew the situation or that Mr. Park was willing to have the physician help the couple discuss it. If, as seemed more likely, he was not willing to discuss it with his wife, then the physician’s problem would remain because he also concluded that his duty to Mr. Park was to keep confidentiality.

The physician believed he had promised confidentiality to the male patient and Hippocratic beneficence to the female patient, but he could not deliver on both promises. He found himself in a spot in which he had two duties and had to determine which one should prevail. Once he has made two contradictory commitments, there is no ideal solution to the problem. If he had been more cautious in what he promised to either patient—​for instance, if he had promised to Ms. Roberts that he would work for what was in her interests unless it involved breaching confidentiality with another patient, or, alternatively, if he had promised to Mr. Park to keep information confidential unless it was crucial to the welfare of another patient—​then the problem would have been solved. But this physician had gotten himself into a bind by making commitments on which he could not deliver simultaneously. The striking thing about this case is that the Hippocratic solution of doing what will benefit the patient does not satisfy most people. First, it poses a serious problem because the clinician has two patients who may have significantly different interests. In that case, it is impossible to be Hippocratic to both patients simultaneously. Second, even if that problem is avoided, as long as the clinician believes it is in Ms. Roberts’s interest to know about her husband’s ongoing affair and STD, he has a duty to tell her, and that does not square with his duty to keep the implied promise of confidentiality with Mr. Park. Those who hold that the promise of confidentiality must be kept must yield on their commitment to the Hippocratic notion that the physician’s primary duty is to benefit the patient. If there is reason to keep the confidence, it must stem from the obligation owed to Mr. Park, one best understood as deriving from a promise made. Respect for persons and the principle of fidelity under that

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notion appear to generate obligations, in this case the obligation of confidentiality, that cannot be overridden by mere considerations of the consequences to another patient. There is another dimension to the confidentiality controversy. Even if confidences cannot be broken merely to do what the clinician believes will be beneficial to the patient, it is possible they may be broken in some cases to benefit others. The AMA Principles of Medical Ethics have been interpreted by its Judicial Council (American Medical Association, 1984, p. 19) to permit disclosure when “a patient threatens to inflict serious bodily harm to another person and there is a reasonable probability that the patient may carry out the threat.”This is clearly not a Hippocratic paternalistic provision.2 It could easily justify breaking confidence when it is not in the patient’s interest to do so. Contrary to the Hippocratic perspective, it introduces a social dimension: consideration of other persons.Whether it is the rights or the interests of the other party that justifies disclosures is a matter that we will take up in Chapter 12. Now we need to see how, at the level of an individual patient, there may be other principles derived from the notion of respect for persons that place limits on the healthcare professional’s duty to do what he or she thinks will benefit the patient.

The Principle of Autonomy and the Doctrine of Informed Consent Keeping faith in relations, called for by the principle of fidelity, is not the only principle entailed in respect for persons. But once one understands the relation between duties derived from fidelity and those derived from beneficence and nonmaleficence, the implications of the other principles under the rubric of respect for persons will be easy to grasp. The most visible principle of the bioethics of the past generation has been the principle of autonomy—​another aspect of showing respect for persons. In fact, respecting autonomy is so central to respect for persons that some (see Beauchamp and Childress, 2013) are inclined to treat autonomy as the only principle of this sort. It seems clear, however, that even persons who are not substantially autonomous can still command respect.3 For instance, the principle of fidelity requires that promises made to the nonautonomous still must be kept. Likewise, in the following sections, we shall see that many people hold that respect for persons implies two further principles: veracity and avoidance of killing. They entail duties to deal honestly and to avoid killing humans, even if those humans are not substantially autonomous or arguably may not be “persons” on some accounts (see Chapter  3 for more on personhood and moral status).

The Concept of Autonomy Etymologically, autonomy means “self-​legislation,” and it can refer to someone’s mental capacity, the quality of a decision, or the moral principle that falls under

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respecting persons. Someone with the capacity for autonomy can make decisions that reflect his or her values, preferences, and sense of self; an autonomous decision is made freely on the basis of these considerations.The principle of autonomy comes, not from the Hippocratic tradition, but from the traditions of Kant and liberal political philosophy. Liberal political philosophy (the very term liberalism focuses us on liberty) has dominated the bioethics of the United States and much of the rest of the Western world since the radical rethinking of bioethics began about 1970. The liberty of the individual is very frequently a key part of the principle of autonomy. We see it dominating liberal political philosophy (although not medical ethics articulated by the medical profession) from the eighteenth century. We frequently see this kind of thinking represented by the use of “rights” language. As was noted in the first chapter, rights have a reciprocal relation with duties. If one person has a right, then others normally have duties. Controversy remains over whether rights or duties are conceptually prior (Macklin, 1976), but they are clearly closely related. Normally, when an appeal is made to a right, this claim is seen as having a special priority or standing such that mere appeals to consequences cannot be used to override the right. We often talk about the right of a patient to give informed consent before being touched, for example, prior to surgery. That’s just an example of playing out this respect for the autonomy of the patient. We can either express this in duty language or rights language, but in either case, the language signals a priority for the claim being made. Sometimes philosophers will say that rights “trump” appeals to consequences, implying that they believe that the principles upon which the rights claim is based take priority over appeals to consequences. Thus, when philosophers say rights and duties are correlative, they mean that this priority might be expressed in two different ways. I can say that a physician has a duty to get informed consent before touching the patient, or I can say the patient has a right to give informed consent before being touched. They mean exactly the same. Sometimes, in Western thought, people talk about a woman’s right to procure an abortion. When a woman expresses this right, she is claiming that under the principle of autonomy she should be free to proceed. Of course, if one believes that the fetus has full moral standing so that duties such as the duty to avoid killing it apply, then the woman would be acting in a way that is depriving someone else of their rights. We would, once again, have a clash between two principles, in this case between the principles of autonomy and avoidance of killing.

Positive and Negative Rights Rights come in two different forms:  negative and positive. Traditionally, autonomy has been understood as primarily related to negative rights. A negative right is a right to be left alone, to be free from the interference of others to act autonomously. These are often called liberty rights. Increasingly, especially

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after continued critiques from feminists, care ethicists, and bioethicists working in non-​Western contexts, autonomy is associated with positive rights. A positive right requires more than non-​interference; it implies obligations to support the person as a decision-​maker and perhaps even provide access to the means necessary to carry out one’s actions. The underlying idea is that people cannot make meaningful, authentic, or reflective decisions without assistance from others—​ either because they need help reasoning through options or because they need access to desired options. These are sometimes called entitlement rights. We can illustrate the difference in the case of an abortion. In the United States, following the 1973 decision of Roe v.  Wade, a woman has a legal right to an abortion—​meaning she has a liberty right, or a negative right. All that means is that she is legally free to pursue an abortion using whatever means she has available within the constraints of the law. If she can find a physician and has enough money to pay for the procedure, she is free to exercise her autonomy rights and make an arrangement with that physician to get an abortion. The legal presumption is that she is free from state interference, although state laws have challenged this presumption. That does not imply a positive entitlement right. If she had an entitlement right, she would have the right not only to engage the physician, but also to the resources necessary, such as the funds to pay the physician. One may believe that a woman ought to have both a liberty right and an entitlement right, but that is not presently the federal law in the United States. Certain states and certain insurance plans may provide such funding. Legal cases since Roe v. Wade have clarified that what Roe established was a liberty right; that is, a woman’s legal freedom to arrange an abortion (and the freedom of a qualified physician to provide it, unless the physician’s employer objects). Of course, the existence of a legal right, in either a liberty or entitlement form, does not settle the question of whether either form of right exists at the moral level. A liberty right gives a woman the right to be left alone, free from state interference, to try to make whatever arrangements in private she is able to make. Claiming an entitlement right is a more extensive claim; it implies that the state or some other body has the obligation not only to refrain from interfering, but also to provide the resources. For those who interpret the right to autonomy as a purely negative right, they could still argue that people should still be given certain provisions or access to services, but instead of basing those positive rights in autonomy interests, they would base them in arguments related to beneficence or justice. Although the principle of autonomy receives full expression in liberal political philosophy, Judeo-​Christianity figures in a complicated way in its prehistory. Early Judaism and Christianity had no principle of autonomy any more than any other ancient culture did. No culture in that day held a moral principle that required respecting life-​plan choices made by individuals. That required the evolution of a concept of individual choice that did not emerge until much later. Until this day, Jewish Talmudic ethics has no principle of autonomy, at least in

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the most traditional forms of rabbinical interpretation. Thus, in more traditional Talmudic interpretation, a patient does not even have the moral right to refuse a recommended treatment (Bleich, 1979). Early Christianity had no principle of autonomy in a full-​blown sense, but what it did have was a remarkable recognition of the importance of the individual and of personal decisions, even when the religious choice of the individual caused separation from one’s family. That seems to be the historical precursor to the development of the principle of autonomy. By the Protestant era in the sixteenth century and the centuries immediately preceding, we begin seeing developments pointing to the affirmation of the individual as a decision-maker. In the fourteenth century John Wycliffe and John Hus as well as the Catholic mystic Johannes Tauler recognized this idea of the importance of the individual. The Protestant Reformation went further in affirming the authority of the individual. We were headed toward a concept of autonomy, even though it did not surface full-​blown until the eighteenth century. Kant, writing in the eighteenth century, is a manifestation. Kant was a German Pietist, and many people believe this Protestant affirmation of the authority of the individual is the basis for Kant’s secular affirmation of autonomy. The past couple of decades have seen repeated challenges to the notion of autonomy. The traditional Western interpretation of autonomy is rooted in individualism, according to which the ideal is for humans to be self-​reliant, independent, and in-​control reasoners. This is why autonomy is sometimes viewed as liberty and a negative right only; the assumption is that people, when left alone without interference, can make rational decisions that reflect their own interests. A  number of feminist ethicists have instead championed a relational view of autonomy because they view us as socially embedded creatures who are mutually dependent on others to build and maintain our capacities and sense of self. Our relationships form the core of who we are, what we care about, and how we pursue what we want out of life (Mackenzie and Stoljar, 2000; Carse, 2006). This means that we need relational support during an informed consent process, for example. The individualist notion of autonomy is also often critiqued from those within the disability community, who argue that someone can have meaningful agency without being independent (Ells, 2001). At least historically, political liberalism focused on the autonomy rights of those who could fully participate in social and political life, but most people with disabilities are systematically excluded from this participation, which means that their autonomy interests are often sidelined or otherwise neglected.A third critique comes from outside the Western context, from those who argue that the autonomous “self ” is not a single individual but instead a collective, such as a family. In certain areas of East Asia, for example, the smallest autonomous unit is the family, and it would make no sense to isolate the patient from their relatives when all decisions should be made in harmonious agreement (Fan, 1997). Contemporary bioethicists have taken many of these critiques to heart, so the notion of autonomy has developed and grown richer over time.

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A number of other philosophical and religious systems in the world do not emphasize autonomy. Marxism does not; nor do Hinduism, Buddhism, Confucianism, and Islam. Of course, in any tradition, certain individuals who have been exposed to views outside their own culture may have adopted some amalgam of cultural commitments. Thus, in modern Japan a Western-​educated physician or lawyer may use language that is peppered with expressions such as “the right of self-​determination” and “individual autonomy.” They are not getting that from Buddhism or Shintoism; it comes from their Western exposure.

Informed Consent, Autonomy, and Therapeutic Privilege Informed consent is a critical element of any theory that gives weight to autonomy. Hippocratic beneficence might incorporate some minimal informed consent, but only when the clinician believes informed consent will benefit the patient. For example, if a physician is about to write a prescription for diphenylhydantoin, an anti-​seizure medication, she might feel obliged to say to that patient that one of the side-​effects of diphenylhydantoin is that it can make one drowsy. She might warn the patient not to drive a car or operate dangerous equipment until he is sure he knows how he responds to this drug. This informing occurs, however, only because she is worried that the patient might injure himself or somebody else. The physician must provide certain information just to protect the patient. In liberal political philosophy, the key idea is that meaningful information must be disclosed even if the clinician does not believe that it will be beneficial. By contrast, Hippocratic ethics includes what is known as therapeutic privilege. It is the privilege that a Hippocratic physician will claim when withholding information that the physician believes would be harmful or upsetting to the patient. That privilege makes sense in an ethic based on paternalistic patient benefit, but is contrary to an ethic giving important place to the principle of autonomy. In the conflict between liberal political philosophy and Hippocratic ethics, a major clash emerges over informed consent.The case of Natanson v. Kline suggests the continuing evolution of the principle of autonomy as a replacement for the Hippocratic ethic and the related doctrine of therapeutic privilege.

CASE 15 NATANSON v. KLINE: WHEN MAY INFORMATION BE WITHHELD? In 1960 in the state of Kansas, a woman named Irma Natanson suffering from breast cancer needed radiation following a radical mastectomy. She suffered terrible radiation burns, after which she sued her doctor, Dr. John Kline, for the injury. One of the counts was that she had not consented to the risk of the radiation burn.

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Dr. Kline defended himself claiming therapeutic privilege. He did not deny that he had failed to tell Mrs. Natanson about the risk of the burns. Often physicians in this position claim that such information might disturb the patient, perhaps even irrationally lead her to refuse consent to the needed treatment. Did Dr.  Kline have the right to withhold this information if he believed it would upset her or make her do something irrational? Or, alternatively, did he have a duty to explain about those risks anyway?

Justice Schroeder, the judge in this case, gave the definitive response of Anglo-​ American liberal political philosophy. Although he used masculine pronouns fashionable in that day when the patient clearly was female, Justice Schroeder held: Anglo-​American law starts with a premise of a thorough-​going self-​determination. It follows that each man is considered the master of his own body, and he may, if he be of sound mind, expressly prohibit the performance of life-​saving surgery or other medical treatment. It followed that, if this information was relevant to her decision about whether she wanted the radiation, she had a right to be informed. When she charged Dr. Kline with failure to get informed consent, the dispute was not over whether she had signed a form. The issue was whether the consent was informed and voluntary. We don’t really care, from the point of view of the ethics, whether a piece of paper has a signature.The piece of paper with a signature may help to demonstrate that the patient has at least seen the paper. It will not prove that the patient read the paper; much less that the signer understood it.The court will, in some cases, throw the consent form out if it is believed that the patient never understood what was on the paper. Thus, back as far as 1960, Justice Schroeder appeared to be rejecting the therapeutic privilege. In 1960, we were just at the beginning of the era when liberal political philosophy was exerting its influence on medical ethics and challenging the therapeutic privilege. We were in a period of transition in which judges and others sometimes reverted to Hippocratic language and sometimes talked as if autonomy were all that counted. Additional text from Justice Schroeder’s opinion reveals the confusion. In spite of the bold appeal to autonomy, Justice Schroeder also said: The physician’s choice of plausible courses should not be called into question if it appears, all circumstances considered, that the physician was motivated only by the patient’s best therapeutic interest and he proceeded as a competent medical man would have done under a similar situation. That sounds very much like the therapeutic privilege doctrine of an earlier era and appears to reject a “thorough-​going self-​determination.” It sounds like

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the judge is about to say that as long as the physician was worried about Mrs. Natanson’s welfare, he had acted acceptably. Justice Schroeder said both that the patient has an absolute right to self-​determination and that the physician should not be questioned if he had the patient’s best therapeutic interest in mind and acted as competent medical men would have in the circumstances.The latter sounds like therapeutic privilege, the former, more like the principle of autonomy. Just before the latter sentence, however, there is an opening clause that conveys that, even as far back as 1960, autonomy was really dominant in Justice Schroeder’s mind. He introduced the therapeutic privilege language with the clause,“So long as the disclosure is sufficient to assure an informed consent.” On balance he appears to be insisting on an adequately informed consent, not just a consent without potentially disturbing information. But in 1960 therapeutic privilege was so common that the judge was still inserting therapeutic privilege language. He was part of the way down the road toward a conversion to respecting autonomy, and he liked to talk self-​determination language, but he still lapsed into the talk of therapeutic privilege. In the end, the judge insisted that the consent be informed. The case presents an ambiguous combination of two points of view and, on balance, it seems to be tipping in the direction of requiring information, even if it is upsetting to the patient and even if it is not the common practice among physicians of the day. It was a series of cases from 1969 to 1972 that really set the pattern of the shift from the more paternalistic Hippocratic basis for consent to one grounded squarely in respect for patient autonomy (Berkey v.  Anderson, 1969; Canterbury v. Spence, 1972; Cobbs v. Grant, 1972). Canterbury v. Spence (1972) is a good example.

CASE 16 CANTERBURY V. SPENCE: INVOKING THERAPEUTIC PRIVILEGE A 19-​year-​old youth named Jerry Canterbury suffered from back pain. He had an operation called a laminectomy to repair a ruptured disc. Afterwards he fell from bed and suffered an injury that resulted in lower-​body paralysis. In the court case, the critical question was whether his physician, Dr.  William Spence, should have explained to Mr. Canterbury the risk of falling out of bed. Dr. Spence made a therapeutic privilege claim, saying he did not think that disclosure was appropriate. Disclosure might have discouraged the patient from consenting to a procedure he needed and might have produced “adverse psychological reactions which could preclude the success of the operation.”

The court affirmed the right of self-​determination, holding that the patient needed to have the information necessary to make an informed decision. At this level the court did not say that Dr. Spence needed to inform about the risk of

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falling out of bed. That question was referred back to a lower court. What the higher court said was that Dr.  Spence had to tell the patient everything that the patient would deem significant to his decision. Dr. Spence still had available the possibility that he could convince a lower court that falling out of bed was so rare or the risk so obvious that the patient would not need to be told about it to make a rational decision.What this court said was that the physician could not use therapeutic privilege to justify withholding of relevant information.

Standards of Disclosure for Consent to Be Adequately Informed No one is insisting that consent be “fully” informed. It is not even clear what that could mean. Telling the patient everything about a treatment is an impossible task. All that is being called for is adequate information. The key question addressed in this series of court cases is what standard should be used in deciding how much information must be transferred for a consent to be adequately informed. Three different standards are considered:  the professional standard, the reasonable person standard, and the subjective standard.

The Professional Standard The professional standard is the traditional standard. It requires that a physician disclose what colleagues similarly situated would have disclosed in similar circumstances. This standard appears to be built on the presumption that deciding how much information to disclose is something that only professionals can know. It is related to the Hippocratic ideology. This, however, does not necessarily serve patient autonomy. It could be that colleagues would not disclose everything about a procedure that a patient would find important. The physician accused of failing to get an informed consent might be able to bring in a number of colleagues who might testify that they also would not have disclosed the disputed information. On the basis of the old professional standard, their testimony would settle the matter in court.

The Reasonable Person Standard Canterbury v.  Spence and other cases of that period introduced a new standard called the reasonable person standard. (It used to be called the reasonable man standard.) It requires that the physician must disclose what a reasonable patient would want to be told or find significant, even if none of the physician’s colleagues would agree. Ruth Faden and her colleagues (1981) conducted a study in a seizure clinic at Johns Hopkins Hospital in Baltimore. She asked the physicians in the clinic how many side-​effects to the medicine Dilantin they would disclose. At least for adult patients, the majority of the physicians identified three: ataxia (defective muscle

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coordination), sedation, and skin rash.These side-​effects required some immediate patient action—​care in operating equipment or checking with the physician—​to control them. Dr. Faden then went to the patients in the clinic waiting room and gave them a long list of possible side-​effects, asking which of them they would like to have been told about.The patients said that they wanted to know about a lot more than those three side-​effects. For example, one of the risks is hirsutism; Dilantin will make hair grow, a problem that could be of concern, especially to some female patients. They might agree that this was not a crucial problem and that, if necessary, in order to prevent epilepsy, it was a risk worth taking, but most patients said they wanted to know about it anyway. By contrast, the majority of the physicians believed patients did not need to know about it. Patients also said they wanted to know about very serious effects, even if they were rare, such as drug-​related mortality, lupus, and teratogenic effects (developmental malformations). Thus, it is now documented that the patients said in the survey that they wanted to know certain risks that the physicians in the same clinic said were not appropriate to disclose. Studies such as this one suggest that reasonable lay people may want to know certain information that the professional standard would not require. If a patient were to sue a physician for failure to disclose certain side-​ effects, the reasonable person standard would support the patient. If reasonable patients want the information, then, according to the reasonable person standard, the clinician is obliged to disclose it. Self-​ determination of the patient is not promoted by the professional standard. Surely, the fact that a physician’s colleagues would not disclose does not establish that patients would not want the information. Disclosing what the reasonable person would want to know seems to come closer. Of course, some patients may not be “reasonable.” They may need more or less information than typical, reasonable people. That suggests a third standard of disclosure.

The Subjective Standard If the goal is to give the patient the information he or she would personally find meaningful, then, to the extent that is known or can be known, it seems that the standard should be more subjective. It should fit with the life plan and interests of the individual patient. This is what is called the subjective standard. It is subjective in that it is based on the actual subjective interests of the patient, not those of some more hypothetical reasonable person, whether patient or physician. Thus, even if the ordinary reasonable person might not want to know of a one-​in-​ 100,000 risk of paralysis of the fingers, the patient who is a concert pianist might. Of course, this creates a difficult, if not impossible, task for the clinician. In order to know which risks and benefits to present, the clinician would have to learn all of the patient’s idiosyncratic interests and tastes. He or she cannot just tell the patient “everything” because there is an enormous, perhaps infinite, amount

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of information that could be said about any treatment. In addition to information about the side-​effects of any particular treatment, information about all available options would have to be provided. Some treatment options that are conceivable are terribly implausible. Indeed, they may even be immoral in the eyes of most people. Nevertheless, they might be very important to some people with unusual lifestyles and preferences. For every condition, suicide is theoretically an option although normally clinicians will not suggest that possibility. There is no way that a clinician can guess at all of the possible areas of concern for each patient. He or she can, however, take into account what is known about the patient. If he or she knows unusual interests, such as the career of the concert pianist, then the clinician must take that information into account. Moreover, the clinician must encourage the patient to make special interests known. Perhaps the optimal approach for deciding what information must be transmitted would be a combination of the reasonable person and the subjective standard.The clinician would disclose what the reasonable person would want to know, adjusted by what the clinician knows or should know about the unique interests of the individual patient.

The Principle of Veracity: Lying and the Duty to Tell the Truth A third way to show respect for persons is by being truthful with them. In addition to the principles of fidelity and autonomy, the principle of veracity is an essential characteristic of human action that shows respect. (It is the third element of respect for persons in Figure  14.) Moral conflicts involving the principle of veracity follow the same pattern as the other principles grouped under the heading of respect for persons. Once again, we have a conflict between doing what is best for the patient in terms of benefit and harm and fulfilling some general obligation, in this case the obligation to tell the truth.

The Change in Physician Attitudes In the United States, two studies of physician attitudes about telling the truth to patients reveal an intriguing pattern. In 1961, Donald Oken published a study in which he asked U.S. physicians what their usual policy was about telling the truth to terminally ill cancer patients. Eighty-​eight percent of the physicians surveyed said it was their usual policy not to tell the patients if the patient was diagnosed with a malignancy. The reason is easy to grasp if one understands the Hippocratic principle and the depth of the commitment of 1960s physicians to that principle. They were afraid that if they told the patient, the patient would become psychologically upset, and the Hippocratic Oath says not to do things that will upset the patient. Almost uniformly, as recently as the 1960s, physicians would not tell patients about cancer.

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Something dramatic happened in the late 1960s and early 1970s. This is the period when respect for persons emerged as a dominant consideration in bioethics—​the time of the Roe v.  Wade case involving abortion, the Canterbury case involving informed consent, and the Karen Quinlan case involving the right to refuse life support. In 1979, Dennis Novack and a group of colleagues published a study in which they replicated Oken’s questions, asking an essentially similar population of physicians. Less than 20 years later, they found 98 percent followed a usual policy of telling.

Accounting for the Change in Attitudes Changes in Judgments about Benefit and Harm The question is, what accounts for this moral shift? Why are physicians now inclined to tell the truth? The original Hippocratic approach stressed doing what will benefit the patient, so that Bernard Meyer, a physician writing in the 1960s, gave the following explanation (notice the Hippocratic quality): What is imparted to the patient about his illness should be planned with the same care and executed with the same skill that are demanded by any potentially therapeutic measure. Like the transfusion of blood, the dispensing of certain information must be distinctly indicated, the amount given consonant to the needs of the recipient, and the type chosen with a view towards avoiding untoward reactions. Meyer, 1968, p. 172 According to this Hippocratic ethic, the physician should tell only things that are going to help the patient and should withhold those things that are going to hurt. The logic is identical to the old idea of the therapeutic privilege, radically different from the attitude found by Novack’s group. Now, how did the change come about? One possibility is that physicians remained consequentialist, but had recalculated the consequences. The medical ethicist Joseph Fletcher (1954) illustrates an early example of the kind of change that could take place without abandoning the focus on consequences. He was a consequentialist; he believed in benefiting patients and protecting them from harm. But according to him, awful things will happen if the physician does not tell the patient the truth. Particularly as we move to complex medicine in a hospital setting, maintaining the fiction of a dishonest diagnosis becomes exceedingly difficult. Everybody on the healthcare team has to maintain the same story, and eventually something goes wrong. Fletcher said that to benefit the patient, in the long run, the consequences are better if the truth is told. That is still staying within the Hippocratic principle, but the consequences are recalculated for a period of high-​technology, complex

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hospital-​based medicine. As early as 1903, pioneering physician Richard Cabot was arguing against virtually all his colleagues that patients would be better off if they are told the truth (see Cabot, 1978 [reprint]).

A Possible Shift to an Ethic of Respect for Persons The other possibility is that, at about this same time, people began saying that something was simply inherently wrong about not being honest with patients. Particularly if one is already committed to informed consent, relevant information must be disclosed. How can one get informed consent for chemotherapy if the patient does not know he has cancer? He would be irrational to consent to radiation or chemotherapy believing all that was wrong was that he had a benign lump. He could not give an adequate consent because he would not be adequately informed.

CASE 17 LIMITS ON THE PHYSICIAN’S DUTY TO PROMOTE HEALTH Jim Sullivan, a man in his early thirties, comes to Dr. Tom Wordsworth’s office for a routine exam in conjunction with a new job. Dr.  Wordsworth starts taking the history. It is obvious that Mr. Sullivan is significantly overweight. He tells the physician that he does not get any exercise, smokes two packs of cigarettes a day, and has done so since he was 14. He drinks a lot and generally does not take very good care of himself. Dr. Wordsworth feels that he should encourage his patient to change his lifestyle. He realizes he is not very likely to change anything simply by telling the patient that he should not drink as much and should quit smoking. This is a man who is not likely to take up an exercise routine simply because this physician says so. Dr. Wordsworth contemplates another approach. He decides to do a chest X-​ray, suspecting that some opacity will appear that will do the trick. He sees nothing terribly alarming on the X-​ray, but notices some spots that would serve his purpose: to shock his patient into changing his lifestyle. With an air of great alarm, he brings the X-​ray to his patient saying that the spots indicate precancerous developments. He says that if Mr. Sullivan stops smoking now, there is a good chance he can stop this development. But if he keeps smoking he is headed for lung cancer. Intentionally overstating, Dr. Wordsworth rationalizes that it is true that Sullivan’s chances of developing lung cancer are higher if he continues to smoke and that it is an innocent, benevolent stretching of the truth to point to the meaningless spots and exaggerate the probability that the smoking would cause cancer. He believes that overstating the risk will benefit his patient. It is the only thing he can think of that will shock him into a new lifestyle.

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Here is a physician lying to a patient about the risk of lung cancer and the meaning of his X-​ray, but his purpose is to benefit the patient. If one is Hippocratic, he or she must at least sympathize with what this doctor is doing. But many people react saying that what Dr. Wordsworth did is still wrong. He told a lie to this patient. He deceived him. Those who include the principle of veracity in their list of ethical principles hold that it is simply wrong to tell a purposeful lie even for the benefit of the patient. Immanuel Kant (1909 [1797]) wrote an essay in the eighteenth century called “On the Supposed Right to Tell Lies from Benevolent Motives.” He argued that “to be truthful or honest in all declarations is therefore a sacred and absolutely commanding decree of reason limited by no expediency.” Expediency was the word of the day for calculation of benefits and harms. So no calculation of benefits and harms was relevant to deciding when a patient should be told, according to this respect for persons or Kantian view. Not everyone who believes lying to be wrong takes as rigid a stand as Immanuel Kant. Most can imagine a situation so extreme that the only plausible course of action would be to lie. In military situations, prisoners captured by an enemy may feel obliged to lie when asked to disclose the position of their colleagues. In medicine, a physician may feel that there are special cases such as a mentally ill, temporarily suicidal patient who asks if a tumor is malignant. A physician may feel that consequences of a truthful disclosure of the malignancy would be so severe in this case that a lie is justified, especially if it is only for a period necessary to overcome the suicidal tendencies. A moral principle such as veracity indicates a characteristic of actions that tends to make actions morally wrong. In Chapter 4 we discussed how some actions may involve two different principles simultaneously. A  physician’s communication with a patient may, for instance, involve both lying to a patient and attempting to protect the patient from harm. We saw in that chapter that there are several different approaches for attempting to resolve such conflicts. For many years the AMA has realized that physicians have sometimes justified lying to patients in order to attempt to protect them. The earlier, more Hippocratic stance accepted lying to patients or withholding the truth from them on these grounds. In 1981 the AMA published a new version of its principles that says that “a physician shall deal honestly with patients and colleagues.” There were no qualifications. That remains the current AMA position in their principles. What did the AMA have in mind here? It could have been adopting a new Kantian view, that it is simply a duty to tell the truth. Or the AMA spokespersons could have been recalculating the consequences of lying and deception thus holding to traditional consequential reasoning, but now believing that honesty tended to be beneficial to the patient. The AMA’s principles fit on one page at the beginning of a much larger document.The principles are adopted by the AMA’s House of Delegates, but that group leaves interpretation to its Council on Ethical and Judicial Affairs. The principles are published at the beginning of a larger volume of the Council’s interpretations.

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Those interpretations suggest the reasoning of the council members. The interpretations say if disclosure poses such a serious psychological threat of detriment to the patient as to be “medically contraindicated,” then the physician may withhold the truth (American Medical Association, 2000, p. 165). The Council reopened a consequentialist justification for dishonesty that the House of Delegates had apparently closed. One explanation is that the House of Delegates, when it adopted the revised principles, was merely saying that it now believes that usually the way to benefit the patient is to deal honestly with him or her, and the Council simply made clear that sometimes calculating consequences will lead to exceptions. The other possibility was that the House of Delegates was making a more fundamental shift to the view that there is simply a duty on the physician’s part to deal honestly with patients, but the Council misunderstood that change, posing an interpretation that fails to take seriously the House’s commitment to honesty. Medically contraindicated is a term that arises frequently in medicine, especially in pharmacology.When someone claims a treatment (or a piece of information) is medically contraindicated, it sounds as if someone is stating a medical fact, but, on reflection, the term medically contraindicated is much more complex. Research may show that a drug or a disclosure may have a certain effect—​that disclosure may be very depressing to the patient, for example. Still, it is a value judgment whether it is wrong to disclose a diagnosis because it will cause depression. Likewise, research may show that a drug has an effect most people do not like. Nevertheless, calling that effect a “side-​effect” or saying that the effect makes the drug “contraindicated” requires a value judgment. It is merely a way of saying that the speaker believes on balance that the effect is undesirable (see Veatch, 1991). In the case of disclosure of a diagnosis, the AMA’s Council is saying that some information can apparently produce effects that the clinician should consider so bad that, in someone’s judgment, the information should not be disclosed. That makes good sense from a Hippocratic perspective, but would be rejected by one who holds to a strong principle of veracity. The three principles that give rise to duties and rights that have been discussed thus far—​ the principles of fidelity, autonomy, and veracity—​are three important constituent parts of the notion of showing respect for people, the main alternative to Hippocratic medical ethics. There is a final element that is sometimes included—​the notion that respecting persons requires that they not be killed even if hypothetically it would do no harm and might even do them good to kill them. That principle, the principle of avoidance of killing, is the subject of the next chapter.

The UNESCO Universal Declaration on Bioethics and Human Rights The most important more recent ethical codification for healthcare is the UNESCO Universal Declaration on Bioethics and Human Rights (2005). It is

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strongly committed to rights and duties as well as consequences and is therefore closely associated with the respect for persons view outlined in this chapter. Adopted by the UNESCO General Conference on October 19, 2005, it is the first bioethics document adopted by an organization that can claim to be worldwide and accountable to all citizens (rather than merely to healthcare professional organizations such as the WMA, the group responsible for the Declaration of Geneva). This declaration, which continues quite self-​consciously the tradition of human rights, applies the 1948 Universal Declaration of Human Rights to matters of healthcare. It sets out a series of principles that closely parallel the principles described in this book in Chapters 6 through 9. It sets out not only principles of benefit and harm (what in Chapter 6 we called beneficence and nonmaleficence), but also autonomy and confidentiality (concepts covered in this chapter) as well as equity, which is closely related to the principle of justice that is covered in Chapter 12. See Figure 15 for the parallels between the UNESCO Declaration and the principles covered. The terminology is not exactly the same, but the

The UNESCO Universal Declaration of Bioethics and Human Rights

Basics of Bioethics Principles

Benefits and Harms (Article 4)

Beneficence and Nonmaleficence (Chapter 6)

Autonomy (Article 5) and Consent (Article 6) Persons without the Capacity to Consent (Article 7)

Autonomy (Chapter 7)

Respect for Human Vulnerability and Personal Integrity (Article 8)

No principle of Human Vulnerability and Personal Integrity (see principles of nonmaleficence (Chapter 6) and autonomy (Chapter 7) as well as the virtues (Chapter 5))

Privacy and Confidentiality (Article 9)

Fidelity (including confidentiality) (Chapter 7)

[No principle of veracity]

Veracity (Chapter 7)

[No principle of avoiding killing]

Avoiding Killing (Chapters 8 and 9)

Justice (Chapter 12) Equality, Justice and Equity (Article 10) Non-discrimination and Nonstigmatization (Article 11) Respect for Cultural Diversity and Pluralism (Article 12) Solidarity and Cooperation (Article 13)

FIGURE 15  The

Principles of Biomedical Ethics: Comparing the UNESCO Universal Declaration on Bioethics and Human Rights and the Principles of This Book

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similarities should be apparent. The striking differences are that the UNESCO document contains no mention of the principle of veracity or avoiding killing. It turns out, as we have seen in this chapter, the idea that there is a duty to tell the truth is among the most controversial in contemporary bioethics. We shall see in the next chapter that a duty not to kill patients is similarly controversial in an era when euthanasia and physician-​assisted suicide are gaining supporters. The committee drafting the UNESCO Universal Declaration took up both topics but could reach no agreement on them. The UNESCO Universal Declaration also includes some additional principles, such as “respect for cultural diversity and pluralism,” “solidarity and cooperation,” “social responsibility and health,” “sharing of benefits,” “protecting future generations,” and “protection of the environment, the biosphere and biodiversity.” These seem to be more explicit specifications of the principles of beneficence, autonomy, and justice rather than independent ethical principles.

Key Concepts Autonomy Literally meaning “self-​legislating,” this is the mental capacity for making reasoned choices that reflect the person’s values, preferences, and sense of self. The formalist or deontological principle to respect autonomy involves permitting autonomous individuals to make their own decisions after due deliberation. Some also suggest a second, more positive, dimension to respecting autonomy that, under certain circumstances, involves assisting individuals in their decision-​making process, such as by removing barriers to informed and voluntary decision-​making. Consequentialism A  type of normative ethical theory that holds that actions or rules are morally right insofar as they bring about the best possible net consequences; that is, a theory based on beneficence and nonmaleficence. Deontological (Duty-based) Ethics Any of a group of normative ethical theories that base assessment of rightness or wrongness of actions on duties or “inherent right-​ making characteristics” of actions or rules rather than on consequences; see also Formalism. Fidelity A formalist or deontological moral principle that holds that actions or rules are morally right insofar as they involve keeping commitments, promises, or contracts. Formalism A type of normative ethical theory that holds that actions or rules are morally right insofar as they conform to a specified form rather than based on the consequences they produce. Individualism The view that prioritizes individuals as independent, self-​reliant, in-​control reasoners, which leads to the conclusion that negative rights are paramount for respecting persons; see Negative Right.

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Negative Right (sometimes called a liberty right) A right to be left alone, to be free from the interference of others to act autonomously. Negative rights are often based on the principle of autonomy. Paternalism Action taken to benefit another person done for the welfare of that person, but against his or her will or otherwise without consent. Positive Right (sometimes called an entitlement right) A right not only to act autonomously, but also to have support as a decision-​maker and access to the means necessary to carry out one’s actions. Professional Standard The standard for informed consent that requires that a physician disclose what colleagues similarly situated would have disclosed in similar circumstances. Reasonable Person Standard The standard for informed consent that requires that the physician must disclose what a reasonable patient would want to be told or find significant, even if none of the physician’s colleagues would agree. Relational View of Autonomy/​Agency The view that human agency and autonomy are socially situated, and relationships with others are necessary for building and acting on these capacities; see Autonomy. Respect for Persons A term referring to a type of deontological or formalist normative ethics in which the principles of moral rightness specify certain duties owed to individuals (such as respect for autonomy, fidelity, veracity, or avoidance of killing). Subjective Standard The standard for informed consent that requires that physicians disclose what the individual patient would want to know or find significant. Therapeutic Privilege The privilege that a Hippocratic physician will claim in order to withhold information when the physician believes the information will be harmful or upsetting to the patient. Veracity A  formalist or deontological moral principle that holds that actions or rules are morally right insofar as they involve communicating truthfully and avoiding dishonesty.

Bibliography American Medical Association. Current Opinions of the Judicial Council of the American Medical Association. Chicago, IL: American Medical Association, 1981. American Medical Association. Current Opinions of the Judicial Council of the American Medical Association—​1984: Including the Principles of Medical Ethics and Rules of the Judicial Council. Chicago, IL: American Medical Association, 1984. American Medical Association. Code of Medical Ethics:  Current Opinions with Annotations. Chicago, IL: American Medical Association, 1994.

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American Medical Association. Code of Medical Ethics:  Current Opinions with Annotations, 2000–​2001 Edition. Chicago, IL: American Medical Association, 2000. Beauchamp, Tom L., and James F. Childress, eds. Principles of Biomedical Ethics, 7th ed. New York: Oxford University Press, 2013. Benjamin, Martin. “Lay Obligations in Professional Relations.” Journal of Medicine and Philosophy 10 (1985): 85–​103. Berkey v. Anderson. 1 Cal. App. 3d 790. 82 Cal. Rptr. 67 (1969). Bleich, J. David. “The Obligation to Heal in the Judaic Tradition: A Comparative Analysis.” In Jewish Bioethics, ed. Fred Rosner and J. David Bleich. New York: Sanhedrin Press, 1979, pp. 1–​44. British Medical Association. Handbook of Medical Ethics. London:  British Medical Association, 1981. Cabot, Richard C. “The Use of Truth and Falsehood in Medicine.” Connecticut Medicine 42, No. 3 (1978): 189–​194. Canterbury v. Spence. United States Court of Appeals, District of Columbia, 464 F.2d 772, 150 U.S.App.D.C. 263 (1972). Carse, Alisa L. “Vulnerability, Agency, and Human Flourishing.” In Health and Human Flourishing, ed. Carol Taylor and Robert Dell’Oro. Washington, DC:  Georgetown University Press, 2006, pp. 33–​52. Cobbs v. Grant. 502 P.2d 1, Cal. (1972). Ells, Carolyn. “Lessons about Autonomy from the Experience of Disability.” Social Theory and Practice 27, no. 4 (2001): 599–​615. Faden, Ruth R., Catherine Becker, Carol Lewis, John Freeman, and Alan I. Faden. “Disclosure of Information to Patients in Medical Care.” Medical Care 19, No. 7 (1981): 718–​733. Fan, Ruiping. “Self-​ Determination vs. Family-​ Determination:  Two Incommensurable Principles of Autonomy.” Bioethics 11, No. 3–​4 (1997): 309–​322. Fletcher, Joseph. Morals and Medicine. Boston, MA: Beacon Press, 1954. General Medical Council. Professional Conduct and Discipline: Fitness to Practise. London: The Council, 1990. Kant, Immanuel. “On the Supposed Right to Tell Lies from Benevolent Motives.” Trans. Thomas Kingsmill Abbott and reprinted in Kant’s Critique of Practical Reason and Other Works on the Theory of Ethics. London: Longmans, 1909 [1797], pp. 361–​365. Kant, Immanuel. Groundwork of the Metaphysic of Morals.Trans. H.J. Paton. New York: Harper and Row, 1964. Mackenzie, C., and N. Stoljar (eds.). Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self. New York: Oxford University Press, 2000. Macklin, Ruth. “Moral Concerns and Appeals to Rights and Duties.” Hastings Center Report 6, No. 5 (1976): 31–​38. Meyer, Bernard C. “Truth and the Physician.” In Ethical Issues in Medicine, ed. E. Fuller Torrey. Boston, MA: Little Brown, 1968, pp. 159–​177. Natanson v. Kline. 186 Kan. 393, 350 P. 2d 1093 (1960). Novack, Dennis H., Robin Plumer, Raymond L. Smith, Herbert Ochitill, Gary R. Morrow, and John M. Bennett. “Changes in Physicians’ Attitudes Toward Telling the Cancer Patient.” Journal of the American Medical Association 241 (1979): 897–​900. Nys,Thomas,Yvonne Denier, and Toon Vandevelde, eds. Autonomy & Paternalism: Reflections on the Theory and Practice of Health Care. Leuven and Dudley, MA: Peeters, 2007.

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Oken, Donald. “What to Tell Cancer Patients: A Study of Medical Attitudes.” Journal of the American Medical Association 175 (1961): 1120–​1128. UNESCO General Conference., “Universal Declaration on Bioethics and Human Rights.” October 19, 2005. http://​portal.unesco.org/​en/​ev.php-​URL_​ID=31058&URL_​ DO=DO_​TOPIC&URL_​SECTION=201.html, accessed August 18, 2019. Veatch, Robert M. “The Concept of ‘Medical Indications’.” In The Patient–​Physician Relation: The Patient as Partner, Part 2. Bloomington, IN: Indiana University Press, 1991, pp.  54–​62.

8 THE PRINCIPLE OF AVOIDING KILLING

LEARNING OBJECTIVES FOR THIS CHAPTER (1) Explain and apply ethical distinctions between active killing versus letting die, withholding versus withdrawing treatment, and ordinary versus extraordinary means. (2) Explain the notion of grave burden and how it relates to decisions at the end of life. (3) Analyze central ethical arguments in the debates surrounding euthanasia and physician-​assisted suicide.

In Chapter 7 we looked at three ethical principles that are elements of the notion of respect for persons. A fourth element has generated a great deal of controversy in recent bioethics. Many religious and philosophical commentators as well as healthcare professionals have held that human beings have a moral status that requires that life, especially innocent life, not be taken by human hands. The idea is sometimes expressed that life is sacred, that it is to be preserved (even preserved at all costs), or that one must refrain from killing. All bioethics recognizes that, at least in certain cases, it is morally wrong to kill. Some commentators explain this by relying on the principle of nonmaleficence—​that causing harm is a morally wrong-​making characteristic of actions. Since killing often would often cause harm, the wrongness of killing in the usual case can be explained by the principle of nonmaleficence. In certain special cases, however, many people would recognize that killing someone might not cause harm. The dying person who is suffering and urgently requests to be put out of his or her misery is an example.

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Killing the permanently unconscious person is another case in which some would say that it does not cause harm to kill. Some, reflecting on these kinds of cases, nevertheless believe it is morally wrong to kill such people. If so, this cannot be explained by nonmaleficence. Some claim that an element of the broad concept of respect for persons is that it is simply wrong to kill them. In this chapter we discuss this notion as the principle of avoiding killing and examine the differences among the various formulations. The principle of avoiding killing is another duty-​based principle. It can conflict with the consequence-​based principles of beneficence and nonmaleficence, just as fidelity, autonomy, and veracity do. The ethics of death and dying has in recent years included a significant controversy over exactly what it means to be dead.The definition of death debate, as it is sometimes called, has led to a shift in favor of a brain-​oriented definition of death. These issues were taken up in Chapter 3. Here we take up the question of how we treat patients who are critically or terminally ill, but are still alive according to the legal definition of death. Critical illness is a life-​threatening condition that may be acute or chronic, usually requiring multiple life-​sustaining treatments for possible stabilization or even cure; terminal illness, on the other hand, is an incurable condition that is expected to lead to death in a relatively brief time (sometimes a six-​month life expectancy is used to specify an illness as “terminal.”) Suppose a still living but critically ill patient raises the question of whether it is necessary for his or her life to continue. This kind of case challenges us to get clear on the meaning of terms like killing, allowing to die, forgoing treatment, and extraordinary means. It also forces us to clarify ethical questions, including whether it is acceptable to actively kill for mercy or to forgo treatment allowing the patient to die. If forgoing treatment is sometimes acceptable, we need to know just which treatments. Here we confront the ethics of caring for the critically ill. In order to discuss this, four distinctions are crucial: the distinctions between active killing and allowing to die; between withdrawing and withholding treatment; between direct and indirect killing; and between ordinary and extraordinary means (Figure 16).

I . Active Killing vs. Letting Die (Action vs. Omission) II . Withholding vs. Withdrawing III. Direct vs. Indirect IV. Ordinary vs. Extraordinary Means FIGURE 16   Four

Basic Distinctions in Death and Dying

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Active Killing versus Allowing to Die The first distinction is the difference between actively killing the patient, on the one hand, and simply allowing the patient to die by forgoing treatment, on the other, sometimes called the commission/​omission distinction. This distinction is widely held throughout the world of medicine (Figure  17). It is generally believed, especially among healthcare professionals, that a moral difference exists between these two acts—​actively killing the patient (commission) generally causes more alarm than simply letting the patient die by withholding life-​preserving intervention (omission). It has been accepted by the American Medical Association (2000, p.  55, 72), Roman Catholic moral theology (Congregation for the Doctrine of the Faith, 1980), and the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983). The distinction is not accepted by Orthodox Judaism. In Judaism, letting a patient die is violating the sacredness of life just as much as actively killing (Bleich, 1979). An Orthodox Jewish patient who decides not to turn off a ventilator or to forgo some other treatment is expressing a longstanding Jewish position that all life is a gift from God and to be preserved, even if it is for a short period. Only when the patient is goses (moribund) will traditional Talmudic scholars accept the termination of life support. In fact, in that case it becomes a moral duty not to interfere with God’s plan for the patient.

Actions that kill are morally wrong while forgoing life support may be acceptable depending on the circumstances. Traditions tending to recognize this distinction: Roman Catholicism The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research American Medical Association Traditions seeing no difference between killing and forgoing life support: Judaism Right-to-Life Groups Groups Supporting Active Euthanasia

FIGURE 17   Active

Killing versus Forgoing Life Support (Actions versus Omissions)

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Distinguishing Active Killing from Allowing to Die Invalid Arguments for Keeping the Distinction between Active Killing and Letting Die Is there really a valid distinction between these two? Some arguments for the distinction really do not make much sense (see Figure 18). For example, the argument that killing the patient just intuitively feels morally very different from letting the patient die cannot prove that there is truly a moral difference. It may be that they feel different only because people have been taught all their lives that it is worse to actively kill than it is to let die. If a feeling has been taught over the years by people who think there is a difference, that feeling cannot be used as evidence that a difference really exists. That would be a circular argument—​that is, it assumes what it seeks to prove. Second, it is sometimes argued that active killing is illegal in almost all jurisdictions while letting die is legal everywhere, at least under some conditions. It is true that active killing, even on the request of the patient, is illegal in almost all jurisdictions of the world. In the Netherlands, for many years an informal arrangement existed between the prosecutors and the medical profession so that if physicians follow agreed-​upon rules they would not be prosecuted even though active killing remained illegal. In 2001 the Dutch Parliament passed a bill that still makes active mercy killing by physicians illegal, but physicians now will be exempt from prosecution if they follow certain requirements. The Northern Territory of Australia in 1995 was the first jurisdiction in the world to legalize active killing for mercy, but that action was overturned by the national legislature. Since then active killing for mercy has become legal in Belgium, Luxembourg, and Colombia. In 2016, the Canadian legislature legalized what it called medical assistance in dying for

Invalid Argument

Reason It is Invalid

They intuitively feel different.

They may feel different because we have always been taught they are morally different.

Active killing is illegal while forgoing treatment is legal.

The fact that one is legal and the other is illegal does not establish that there is a moral difference or that there should be a legal one.

Active killing would change the role of the physician.

Physicians need not be the ones doing the killing.

FIGURE 18   Invalid Arguments

for the Omission/​Commission Distinction

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certain competent adult Canadian residents who request a physician to administer a lethal medication or to assist them in committing suicide. In addition, by 2019, physician assistance in suicide (aiding someone in killing themselves) had been legalized in Switzerland and Germany as well as in ten jurisdictions of the U.S. (California, Colorado, District of Columbia, Hawaii, Maine, Montana, New Jersey, Oregon,Vermont, and Washington). Regardless of the state of the law, one cannot use what the law says to determine what is ethical. Imagine legislators in a jurisdiction trying to figure out what the right law is to pass. They cannot argue that because it is illegal, it should stay illegal. It is possible that it is presently illegal, but ethical. In that case, perhaps the law should be changed. Or in Montana, where the Supreme Court ruled physician-​assisted suicide was not prohibited, legislators faced the question of whether they should make it illegal. Third, sometimes it is argued that active killing is different from letting die because, if physicians were allowed to actively kill, their role would be changed in a way not entailed in simply letting critically ill patients die. But it would theoretically be possible to legalize active killing while still prohibiting physician participation. We could prohibit physician participation, leaving the role of euthanizer to other people. The law could authorize some other group to actively kill. If one believes that the physician’s role is healing and that healing is incompatible with killing, then we might say,“No one in this special role should kill, but other people could.” Likewise, if active killing for mercy were legalized we might also want to exclude people in certain other social roles from the practice. Elementary school teachers, for instance, might have responsibilities that would make it difficult aesthetically and practically to permit them to moonlight as euthanizers.

Consequentialist Arguments for and against Distinguishing Active Killing and Letting Die Are there more valid arguments for the distinction between omissions and commissions? Some think they can oppose the distinction by arguing from consequences. Some consequentialists argue that the result is going to be the same whether the terminally ill patient is actively killed or is simply allowed to die.The patient is going to be dead soon either way, so it really does not make any difference. Other consequentialists attempt to defend the distinction, replying that the consequences of commissions and omissions may not really be the same. The consequences to the society, they argue, are actually worse if we permit active killing than if we continue to forbid it and permit only forgoing of treatment. That is an empirical question. What will the world be like if we legalize active killing? Will there be spillover effects, so that some people get killed who should not be killed? In the early days of the policy debate in the Netherlands, an important series of studies was conducted by the Remmelink Commission, a governmental

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commission established to examine the effects of the Dutch tolerance for active physician euthanasia (Netherlands Ministry of Welfare, Health and Cultural Affairs, 1992; also see Van der Maas et al., 1991). The governmental commission made its best estimate of the number of physician interventions to end life in a 12-​ month period. In the Netherlands euthanasia is defined as a physician intervention to kill the patient after a persistent and voluntary request. The report estimated there were 2300 such interventions. This does not include about 400 assisted suicides, which were already considered legal in the Netherlands. The critical finding was that the governmental commission estimated that 1000 additional life-​terminating acts occurred without an explicit and persistent request from a competent patient (Netherlands Ministry of Welfare, Health and Cultural Affairs, 1992). Thus, almost one in three life-​terminating interventions by physicians did not conform to the stipulated terms of the arrangement, which included that the request from the patient had to be explicit and persistent. Moreover, they also found that, of the total of 3724 actions by physicians to provide medical assistance in actively ending life, only 486 were reported as required on death certificates. The net result is only 16 percent of the acts in which physicians actively assisted in causing the death of a patient were completely within the terms of the agreement. It is not possible to know whether the quasi-​legalization of active euthanasia in the Netherlands increased the number of nonvoluntary and extralegal killings by physicians, but critics of the law claim that these nonvoluntary deaths increase when voluntary mercy killing is made acceptable.

The Argument from Implications for Mentally Incapable Patients Those who favor legalizing active killing attempt to guard against these bad outcomes by limiting the cases in which it would be permitted. They insist that the patient make a voluntary request while mentally capable1 and that the patient be certified to be terminally ill. They propose that a second physician confirm the diagnosis and certify the patient’s mental capability and the voluntariness of the patient’s choice. But those very safeguards may have unexpected implications. These requirements could actually make it more difficult for patients who are not mentally capable to be treated humanely. Most commentators agree that it is morally justifiable to withdraw life-​sustaining treatments from those who lack the ability to make their own decisions with surrogate approval using the same criteria of uselessness or grave burden that are used for people who can make their own decisions, even if the patient has not made an explicit, voluntary request to end treatment and even if the patient is not terminally ill. If, however, those who claim there is no difference between omissions and commissions carry the day, then there would be no reason to use different criteria for deciding when to accept omissions and commissions. If we are committed to the view that active, merciful killings are only justified when the patient is terminal and voluntarily requests to be killed while mentally capable and if the same criteria apply to

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omissions, then it would always be unacceptable to withdraw life support from mentally incapable patients. In fact, it would even be unacceptable to withdraw life support for mentally capable persons who were not terminal. The premise that there is no difference between omissions and commissions combined with the belief that commissions are acceptable only for terminal, mentally capable patients leaves the mentally incapable and the nonterminal not only without active killing, but also without relief that would come from forgoing life support. They are condemned by the logic of the premise that there is no difference between omissions and commissions. The only other option is for the defenders of active killing for mercy to revise their belief that active killings are only acceptable when patients are terminal and voluntarily ask to be killed after being certified mentally capable. In fact, many more honest defenders of active killing for mercy acknowledge that there is no logical way to limit such killings to those who are terminal and mentally capable. The same concern for compassion in the face of suffering would seem to support mercy for the nonterminal and mentally incapable as well. If there is no difference between active killing and letting die, then either both are acceptable for everyone or neither is acceptable for the nonterminal and the mentally incapable. This leads some people to conclude that, even though the distinction is hard to maintain, there must be something to it. Two other arguments have been put forward to attempt to sustain that claim.

The Argument from a Principle of Avoiding Killing A third argument in defense of the traditional distinction between active killing and letting die rests on the belief that there is a principle of avoiding killing. According to this view, there is something inherently wrong about killing a human. (Whether this principle extends to nonhuman species was a question raised in Chapter 3, where we also considered exactly who counts as human with this full moral standing such that it would be wrong to kill them.) The principle of avoiding killing is, according to many, a fourth part of respect for persons. Just as there is something inherently wrong with violating fidelity or autonomy or veracity, so, according to this view, respect for persons entails the idea that killing a human being is morally wrong even if, hypothetically, it would be in that person’s interest to be killed and even if that person voluntarily requested to be killed. This is the position held by Jews and ancient Christians. It is also held by Muslims, Buddhists, and Hindus and is accepted by many secular thinkers, including Marxists, and by many healthcare professionals. Some versions of this commitment to avoid killing extend to treating all human life as sacred, so it is not only wrong to actively kill, but also to let any preventable death occur. Sometimes, in this form, this position is referred to as the principle of the sacredness of life. Holders believe all life is sacred and must be preserved whenever possible.

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Taking such a view literally, however, would require extremely rigorous demands: preserving as long as possible the lives of the terminally ill and comatose and actively intervening to prevent all deaths not only in war and violence, but also in famine and natural disasters. Most believe that it is not one’s moral duty in the strict sense to prevent all preventable deaths no matter how remote and how difficult to prevent. They accept the naturalness of death, but interpret the principle of avoiding killing to stand against any actions that will hasten death. If this principle of avoiding killing applies only to active interventions to hasten death, then there would be a basis for distinguishing between active killings (commissions) and letting die (omissions). Surely, some omissions that lead to death are morally wrong as well. Someone who had an affirmative duty to save a life and failed to do so would have violated some moral principle. A parent who fails to feed his child or an emergency room physician who fails to deliver basic emergency care that could be life-​saving would have violated specific duties to act affirmatively. Perhaps this can be viewed as violating the principle of fidelity—​that is, failing in a fiduciary relation.

The Argument from Autonomy A fourth way of arguing that commissions and omissions that result in the death are morally different can be called the argument from autonomy and informed consent. Letting die at the request of the patient is required by the duty to respect autonomy, assuming the patient is mentally capable and has gone through a proper informed refusal process (to ensure the patient’s understanding and appreciation of the end-​of-​life nature of the decision). Even a surrogate decision-​maker (a person who is authorized in one way or another to make decisions on behalf of a mentally incapable patient) is ethically permitted to allow a patient to die by refusing further medical interventions on the patient’s behalf, as long as the surrogate has been properly informed and is making the decision based on the patient’s known values and interests. (Things are trickier for patients who are minors, since parents have significant decisional authority but are not permitted to violate the basic interests of their children, who are presumed to have underdeveloped autonomy interests and are thus in need of additional protections.) By contrast, the duty to respect autonomy never requires that a physician kill a patient. As a negative right, autonomy requires noninterference with a mentally capable person’s life plans (although other obligations, such as those based in nonmaleficence, can come to bear on whether interference is warranted in cases of self-​harm, for example). When autonomy is interpreted as purely a negative right, there is no correlated obligation for others to facilitate those plans, which in this case would mean that no one is obligated to kill a person at their request. When interpreted as a positive right as well, autonomy would further obligate properly situated persons (or institutions or the state) to support the development of the capacities necessary for autonomous decision-​making and provide

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access to those goods and services that are needed for someone’s chosen life plan. All or almost all rights have limits, however; they cannot obligate everyone infinitely in all circumstances. A minority argue that physicians do have an obligation, out of respect for patient autonomy and for their role as loyal and compassionate healers, to end life when it is an existence of unmitigated suffering and the patient requests it to end. Most instead argue that physicians (and other healthcare professionals) retain their own right to professional autonomy, which allows them a certain amount of discretion in how they practice medicine. Competing duties and concerns would therefore permit a healthcare professional to refuse to kill a patient, even at the patient’s request. (See Chapter 7 for more on autonomy and rights.)

New Legal Initiatives for Physician-​Assisted Suicide Distinguishing Homicide on Request from Assistance in Suicide Recently, advocates of more active interventions to hasten death have made some additional conceptual distinctions. They have separated cases in which one person would actively kill another at that person’s request from cases in which the one helping would merely assist in the person’s suicide (Balkin, 2005; Gorsuch, 2006; Mitchell, 2007; Quill and Battin, 2004). The key, they argue, is whether the helper takes the last critical step that causes the death. On the basis of this distinction, injecting a lethal drug would be homicide. (If it were done at the patient’s request, it would be called homicide on request.) On the other hand, prescribing an oral form of the drug that was then taken by the patient would be considered assistance in suicide since the last key step (taking the drug) was done by the patient. In the 1990s there was a significant movement attempting to legalize assisted suicide, in which the assistance is provided by a physician to a mentally capable, terminally ill patient who has requested the assistance. As of 2019, this is what is now legal in California, Colorado, District of Columbia, Hawaii, Maine, Montana, New Jersey, Oregon,Vermont, and Washington, as well as certain European countries including Switzerland, Germany, and those that have legalized active killing for mercy. Part of the moral argument is that if the cases are limited to patients certified as terminally ill who have documented requests for assistance and if the patient must physically take the key step that results in death, the risk of abuse is lessened. In the early 1990s, however, the reformist physician Jack Kevorkian developed a “suicide machine” that could be transported in a van. He reportedly assisted in the suicide of at least 130 people, some of whom were apparently not even terminally ill. The Michigan Supreme Court has confirmed that the law prohibiting assisting in suicide was not unconstitutional (People v.  Kevorkian, 1994). Nevertheless, in spite of several prosecutions, he was never convicted of assisting in a suicide, in part because it was difficult to prove what he had done and in part because some jurors in Michigan were sympathetic. Not content with assisting in suicide and

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wanting to press the issues further, he injected Thomas Youk, a 52-​year-​old man in the end stages of amyotrophic lateral sclerosis (ALS), with a lethal drug to end his life. He videotaped the events making clear that Youk appeared mentally capable and desired to end his life. His ALS paralyzed him so he was unable to take medication himself thus requiring the injection by another person. When the videotape was shown on the television program 60 Minutes, Kevorkian was prosecuted. He was convicted of second-​degree murder in 1999 and sentenced to 10–​25 years in prison.

Initiative Petitions Assisted suicide has also been pursued through an “initiative petition,” a process that permits citizens to place issues on a state ballot. Initiative 119 in the state of Washington in 1991 was the first attempt to legalize physician-​assisted suicide. It did not pass, but it got 46 percent of the vote and was a sign of things to come (McGough, 1993). The next year another citizens’ initiative was attempted in California, and it did about as well (Capron, 1993). In Oregon in 1994, a referendum legalizing physician assistance in suicide for mentally capable, terminally ill patients was passed by a close vote (Oregon Death with Dignity Act, 1994) and has been sustained in challenges all the way to the U.S. Supreme Court, making it the first law in the United States legalizing physician participation in active assistance in suicide. It still does not legalize actual killing by physicians. Meanwhile proponents of assisted suicide made two unsuccessful attempts to legalize it, one arguing that state laws prohibiting such assistance violated constitutionally protected liberty (Compassion in Dying v.  State of Washington, 1994), the other, that it violated the equal protection clause of the Constitution by supporting persons who wanted to end their lives by terminating life support while prohibiting those who wanted to end their lives with physician-​assisted suicide (Quill et al. v. Vacco et al., 1995). The U.S. Supreme Court rejected both of these. The result in the United States is that individual states have the authority either to ban or permit physician-​assisted suicide. In 1997, Oregon legalized physician-​assisted suicide using a voter initiative.Washington used a similar process in 2008, and other states have since followed this path.The Montana Supreme Court found assisted suicide legal in 2009. Other states continue to consider the question. The ethics of physician assistance in suicide is now four-​square on the agenda for moral and public policy debate. One issue raised is whether there is any principled difference between physician assistance in suicide and physician killing for mercy. Many are claiming that if physicians may assist in suicides of patients, they may, for the same reasons, actually intervene to commit the lethal act. A patient (Thomas Youk, for example) who retains mental faculties but is so immobilized by disease as to be unable to take any action on his or her own seems to be

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deprived of the alternative available to terminally ill persons who could take lethal medications. This could lead to a right to have assistance not merely by providing information or writing a prescription, but actually by having the physician do the injection. One practical argument remains for a distinction between actually committing the killing on request and merely assisting in suicide. If we are concerned about the potential for abuse and about some physicians who might irresponsibly attempt to pressure difficult patients into ending their lives, then possibly it makes sense to hold on to the requirement that the patient must himself or herself actively take the decisive step in ending his or her own life. Of course, some are concerned that even permitting physician assistance will run the risk that patients will be pressured into committing suicide. Some, pointing to Dr.  Jack Kevorkian, are concerned that the personality of many physicians prepares them to intervene aggressively, taking matters into their own hands. This is the personality that is ideal for an emergency room when a patient has a blocked airway and needs instant, aggressive intervention to save a life, but it could be just the wrong personality type for terminally ill patients who are candidates for having their lives ended. Many of those who oppose such interventions do so on ethical grounds rooted in the principle of avoiding killing or the doctrine of the sacredness of life. They are unlikely to be persuaded that pragmatic checks that will minimize abuse are relevant in deciding the matter. Some who continue to hold out for a difference between all active killings (both homicides on request and assisted suicides) and merely letting die may appeal to the difference between well-​established negative rights and more controversial positive rights. It is likely that the matter of legalization of active life-​ending interventions will remain controversial.

Stopping versus Not Starting Besides the basic distinction between omission and commissions, a second distinction complicates the ethics of the care of the dying. It is common to feel that it is morally worse to withdraw a treatment once it has begun than to avoid starting it in the first place. To many physicians and nurses who physically must withdraw a ventilator or other treatment, it feels psychologically as if they are actively killing just as certainly as if they had injected an air embolism. But treating withdrawals the same as active killings raises practical problems. It makes no sense as a practical matter. It seems wiser to follow a policy of trying a treatment and then withdrawing it if it is not working. The law treats stoppings as “forgoing treatment”; that is, it views them as the same as not starting in the first place. Withdrawing is comparable to withholding, not as active killing. The argument from autonomy explains why stopping treatment is morally the equivalent of not starting. Stopping is morally required by autonomy when consent to treatment is canceled. By contrast, killing is never obliged by the autonomous action of the patient or surrogate. If the principle

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of autonomy is significant in understanding why commissions are different from omissions in the first place, it should help us understand why withdrawing a treatment is morally like an omission rather than a commission. Now most commentators, legal judgments, and hospital policies that recognize the legitimacy of the omission/​commission distinction will classify withdrawing as comparable to withholding. That is the position of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983, pp. 73–​77) and other groups such as the AMA and Roman Catholic theologians. It is also the view of Talmudic scholars although they, by contrast, find both withholdings and withdrawings morally unacceptable.

The Distinction between Direct and Indirect Killing A third distinction is often confused with active/​passive or commission/​omission distinction: that is the distinction between direct and indirect effects. This notion is also sometimes referred to as the doctrine of double effect. The basic idea is that in some situations an action can lead to two effects, one intended and desirable, the other unintended and undesirable. The doctrine of double effect holds that the unintended, undesirable effect is morally tolerable if the action itself is not immoral, the undesirable consequence is not a means to the desirable one, and the desirable effect produces a great enough amount of good to be proportional to the undesirable effect. A killing that is “direct” results from an action (or omission) in which the intention of the actor is the death of the individual. A  nurse who refused to answer a code because he wanted the patient dead is direct killing by omission. An indirect effect, such as a death, results from an action (or omission) in which the effect may be foreseen by the actor, but is not intended and is not a means to a desired effect. An anesthesia accident in high-​r isk surgery would certainly not be intended although it might be foreseen as a possible outcome. Deaths in such cases are considered morally tolerable (although still tragic) according to those who subscribe to the doctrine of double effect. Consider a physician who is morally opposed to abortion and who is caring for a pregnant woman with cancer of the uterus. Removing a cancerous uterus in a pregnant woman would certainly be known to cause the death of the fetus. That outcome is foreseen with absolute certainty. Nevertheless, even opponents of abortion, such as those who subscribe to the main tenets of Catholic moral theology, would find such a death morally tolerable although they would oppose all directly intended abortions. In this case, if they could save the fetus, they would do so, but in the case of the pre-​viable fetus that would not be possible. The death of the fetus would not be the intended purpose of the action. Defenders of the removal of the uterus who nevertheless oppose directly intended abortion would say that, in this case, the physician was performing the act of removing the uterus. The physician could say that this act has a double effect: that is, two

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consequences—​one desired and intended, the other undesirable and foreseen but not intended. Giving high doses of narcotic for the purpose of relieving pain may also be known to run the risk of respiratory depression and even death. Once again, that death is morally tolerable according to the doctrine of double effect if it had not been intended even though it might be foreseen. If an analgesic could have been used that would have avoided the risk of death, then it would have been used.The Catholic Church opposes all direct killing, as does the AMA.The courts generally accept the distinction as well. Critics of the doctrine claim that it is important to distinguish between the morality of the behavior and the morality of motivation. They acknowledge that the character of the actor who wants to see someone dead may be different from that of the person who merely knows that death may be an inevitable, unintended outcome. They insist, however, that these judgments about the character of actors not spill over into assessments of the behavior itself. They hold that giving an effective dose of a narcotic that is known to run the risk of death must be deemed morally right behavior even if that outcome is bad, provided the intention of the actor was to relieve pain rather than cause the death. If someone malevolently wanted the patient dead and took advantage of his severe pain to give a narcotic that was known to run the risk of killing, the critics of the doctrine of double effect might simply say that this person did the morally right thing for a morally wrong reason.

The Distinction between Ordinary and Extraordinary Means The Meaning of the Terms Having made the previous three distinctions, we can limit our attention to forgoing of treatments in situations in which the death is not directly intended, whether the treatment is withheld or withdrawn. We need to try to determine which among the treatments that are possible are morally required. The traditional term for those treatments that could acceptably be forgone was extraordinary means while those that were morally required were called ordinary means. That language was unfortunate and confusing. There are at least three ways to distinguish ordinary from extraordinary treatments. The first two are older, largely rejected meanings. Treatments could be distinguished statistically by separating common from uncommon ones and considering the common ones “ordinary.” That would seem to be the normal meaning of the term ordinary. They could also be distinguished by the complexity of the technology separating simple from complex, high-​tech interventions and calling the former “ordinary” and the latter “extraordinary.”

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Neither distinction provides a plausible basis for making a moral distinction. Just because a treatment is common, it is not necessarily morally required for every patient. For some patients even common procedures may be inappropriate. They may serve no purpose, or the patient may be known to react poorly to them. Likewise, some very unusual procedures may be just right for some patients. By the same token, it makes no sense to decide which treatments are required by asking how complex the technology is. Some everyday, simple procedures may not be right for certain patients while complex, high-​tech ones may be exactly what some patients need. Bioethicists have never used the term ordinary to mean either common or simple; they have not used extraordinary to mean either uncommon or complex. Rather the terms have been used to refer to morally required (ordinary) and morally expendable (extraordinary) treatments. Currently, the terms ordinary and extraordinary are being abandoned and replaced by language that makes it clearer the inherently normative character of the distinction that needs to be made; that is, it is a moral distinction rather than a statistical one. We are increasingly simply referring to appropriate and inappropriate treatments. That language does not reveal the criteria for appropriateness, but it at least makes clear that the reference is not to how common or how simple the treatment is. This new terminology does not constitute a real change in meaning.The terms ordinary and extraordinary have always had the normative meaning among the philosophers and theologians using them. The terms simply refer to treatments that are morally required or fitting and those that are not. The key question is, what are the criteria that make the treatment appropriate?

The Criteria for Classifying Treatments Morally Expendable Uselessness Traditionally, a treatment has been considered morally expendable if it does not serve a useful purpose. That judgment just seems like common sense. But, as we shall see, figuring out whether a treatment serves a useful purpose turns out to be more complicated than it may appear.

Grave Burden Even if a treatment serves a useful purpose, such as prolonging life, it may still be expendable if it involves a grave burden. Both these criteria are cited by the President’s Commission for The Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983, p. 84). The language came from Catholic moral theology and was used by Pope Pius XII in a statement on prolonging life in which he said:

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But normally one is held to use only ordinary means—​according to circumstances of persons, places, times and culture—​that is to say, means that do not involve any grave burden for oneself or another. Pope Pius XII, 1958, pp. 395–​396 In this statement Pius XII refers only to grave burden. Other Catholic moral theology literature includes uselessness as a criterion as well. Note, however, that he includes burden to others as well as burden to the patient, a foreshadowing of the social bioethics that we shall encounter in Chapter 12. For the remainder of this chapter we shall focus on the burden to the patient as a basis for forgoing life-​sustaining medical treatment.

Proportionality In considering both useless and grave burden, we are really dealing with the question of benefit/​harm ratios. An absolutely useless treatment is one with a zero benefit and therefore one that always has an unfavorable benefit/​harm ratio.2 A gravely burdensome treatment could be one that would have some benefits, but whose benefits would be equaled or exceeded by the burdens.3 Recognizing that both these criteria reduce to a notion of a favorable benefit/​harm ratio, the Vatican Declaration of 1980 urged the adoption of a single criterion of proportionality as the basis for deciding which treatments may morally be omitted (Congregation for the Doctrine of Faith, 1980, p. 8). This notion was accepted by the President’s Commission (1983, p. 88), but in characteristic American fashion, it has given the criterion a patient-​centered twist, emphasizing that the values that underlie the judgments of benefit and burden are subjective and must be the patient’s values: Extraordinary treatment is that which, in the patient’s view, entails significantly greater burdens than benefits and is therefore undesirable and not obligatory, while ordinary treatment is that which, in the patient’s view, produces greater benefits than burdens and is therefore reasonably desirable and undertaken. President’s Commission, 1983, p. 88, emphasis added4

The Subjectivity of All Benefit and Harm Assessments The emphasis in the President’s Commission Report on the subjectivity of the value judgments in all benefit and harm assessments is becoming a critical dimension in all judgments about the appropriateness of medical treatments. As we saw in Chapter 6, determining whether an effect is a benefit or a harm, and, in either case, how much of a benefit or a harm, is invariably subjective. There is no reason why

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being an expert in medicine gives one special expertise in making these judgments. Of course, being an expert in medicine helps in knowing what the effects are likely to be, but once the effect is specified, a positive or negative value must be assigned. It is this task that is inherently subjective and beyond the expertise of the healthcare professional. In fact, insofar as we are concerned about the benefit or harm to the patient, it is not going too far to say that the healthcare professional cannot know whether the treatment will be beneficial and, if so, how beneficial without asking the patient (Veatch, 2009). It is the patient who is likely to be the authority on making the assessment insofar as it is the effects on him or her that are concerned. If one includes the principle of autonomy in any assessment of the morality of a treatment option, then, even in those cases in which it seems clear that the patient is not the best judge of how beneficial the treatment is, it may still be the patient’s right to decide whether it is provided (although an important caveat here is that clinicians retain a limited right to refuse to participate in providing treatments). Determining when a burden is a grave burden is perhaps more obviously subjective. Two patients, medically identical, may have very different subjective responses to treatments. One may experience dialysis as unpleasant, but bearable, while another experiences it as intolerable. For the latter the burden is surely greater than for the former. When the burden gets great enough, then, using the criterion of proportionality, the treatment becomes expendable. It may be somewhat harder to understand that uselessness is also a subjective judgment. Uselessness sounds like a matter of objective fact. But uselessness must be defined as a function of what counts as worthwhile. Consider the possibility of using a ventilator to maintain a patient in a permanent vegetative state. If the purpose is to restore the patient to consciousness, then the ventilator is totally useless. If, however, someone views even vegetative life as precious and worth maintaining, then the ventilator could be thought of as very useful.

Withholding Food, Fluids, CPR, and Medications If the morality of a treatment is a function of benefit/​harm ratio from a patient’s point of view, are there any universally required treatments? What about antibiotics for infection, CPR (cardiopulmonary resuscitation), fluids, nutrition, and routine nursing protocols such as turning a patient? Three views can be considered: (1) these are simple, therefore required, (2) these can be expendable as objectively useless, or (3) their usefulness is a function of patient (or surrogate) preferences. Controversy exists over whether there is some abstract sense in which there is an objective theory of value for determining whether these treatments are serving a worthwhile purpose. Even if there is, it seems obvious that mere mortal, finite human beings, whether they be physicians or philosophers, are incapable of rendering a definitely correct account of whether these are useful or useless in a given case.

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Increasingly these are seen, like all other medical treatments, as requiring benefit/​ harm determinations. In many cases, providing food, fluid, CPR, antibiotics, and routine nursing procedures will be worthwhile on balance and, in those cases, they should be provided. In other cases, however, they may actually do no good for the patient—​from the patient’s perspective. They may even produce burdens that exceed expected benefits. In those cases, according to the proportionality view that now prevails, they are morally expendable.They are “extraordinary” means no matter how routine and simple. This means there can be no such thing as a routine DNR (Do Not Resuscitate) order or an inherently necessary provision of fluids and nutrition. As a matter of law, regulations may require that all infants must be provided with antibiotics, fluids, and nutrition—​apparently even when they serve no purpose or offer substantially grave burden. Many observers, however—​including the authors of the President’s Commission Report, spokespersons for the Catholic Church, and other conservative commentators—​are now acknowledging that there are times when these serve no purpose and can be omitted (President’s Commission, 1983, p. 90; May et al., 1987). With the incorporation of all medical treatments into the framework of benefit and harm assessment under the criterion of proportionality, there is increasing agreement on how to analyze decisions involving mentally capable patients and how patients should go about making those decisions. The real controversies for the future center on the problem of active intervention by healthcare professionals to assist in suicide and to kill for mercy and on how these difficult life-​and-​death decisions can be made on behalf of patients who are not their own decision-​makers.

Key Concepts Assisted Suicide Providing help to a person to facilitate his or her suicide—​ normally by education or supplying the means for committing suicide. Consequentialism A  type of normative ethical theory that holds that actions or rules are morally right insofar as they bring about the best possible net consequences; that is, a theory based on beneficence and nonmaleficence. Doctrine of Double Effect The doctrine that when an action can lead to two effects, one intended and desirable and the other unintended and undesirable, the unintended, undesirable effect is morally tolerable if the action itself is not immoral, the undesirable consequence is not a means to the desirable one, and the desirable effect produces a great enough amount of good to outweigh or be proportional to the undesirable effect. Euthanasia The term often for trying to provide a “good death” by active killing; in bioethics, this refers to physicians providing a lethal injection to hasten a patient’s

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death. In some cases, the term is used so as to include forgoing of life-​support (as in the usage “passive euthanasia”). Extraordinary Means Medical treatments that are not morally required. Forgoing Treatment The term often used to refer to either withholding or withdrawing of treatment. Homicide on Request Killing of another person at his or her request—​in medicine normally as an act of mercy—​such as by injecting a lethal drug. Involuntary An action done on another person’s behalf directly contrary to what that person has expressed as his or her preference; cf. Nonvoluntary,Voluntary. Nonvoluntary An action taken on another person’s behalf without his or her understanding or agreement, though that person has not openly objected; cf. Voluntary, Involuntary. Ordinary Means Medical treatments that are morally required. Proportionality The criterion for determining whether a medical treatment is required or expendable by assessment of the benefit/​harm ratio. Treatments are disproportional if the benefits do not exceed the harms (i.e., if the ratio is 1 or less). Surrogate Decision-​maker Someone who is authorized to make decisions on behalf of a mentally incapable patient. Voluntary An action done intentionally and with understanding; cf. Involuntary, Nonvoluntary.

Bibliography American Medical Association. Code of Medical Ethics:  Current Opinions with Annotations. Chicago, IL: American Medical Association, 2016. Appelbaum, Paul S. “Assessment of Patients’ Competence to Consent to Treatment.” New England Journal of Medicine 357, No. 18 (2007): 1834–​1840. Balkin, Karen F., ed. Assisted Suicide. Detroit, MI: Greenhaven Press, 2005. Battin, Margaret P., Leslie P. Francis, and Bruce M. Landesman, eds. Death, Dying and the Ending of Life. Burlington,VT: Ashgate, 2007. Baxter v. State, No. DA 09-​0051 (Mont. December 31, 2009). Beauchamp, Tom L., and Robert M. Veatch, eds. Ethical Issues in Death and Dying, 2nd ed. Upper Saddle River, NJ: Prentice-​Hall, 1996. Bleich, J. David. “The Obligation to Heal in the Judaic Tradition: A Comparative Analysis.” In Jewish Bioethics, ed. Fred Rosner and J. David Bleich. New York: Sanhedrin Press, 1979, pp. 1–​44. Buchanan, Allen E., and Dan W. Brock. Deciding for Others: The Ethics of Surrogate Decision-​ Making. New York: Cambridge University Press, 1990.

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Capron, Alexander-​Morgan. “Even in Defeat, Proposition 161 Sounds a Warning.” Hastings Center Report 23, No. 1 (1993): 32–​33. Compassion in Dying v. State of Washington, No. C94-​119R, United States District Court, W.D. Washington, at Seattle, May 3, 1994. Congregation for the Doctrine of the Faith. Declaration On Euthanasia. Rome: The Sacred Congregation for the Doctrine of the Faith, 1980. Gorsuch, Neil M. The Future of Assisted Suicide and Euthanasia. Princeton, NJ: Princeton University Press, 2006. May, William E., Robert Barry, Orville Griese, Germain Grisez, Brian Johnstone, Thomas J. Marzen, James T. McHugh, Gilbert Meilaender, Mark Siegler, and William Smith. “Feeding and Hydrating the Permanently Unconscious and Other Vulnerable Persons.” Issues in Law and Medicine 3, No. 3 (1987): 203–​217. McGough, Peter M. “Washington State Initiative 119: The First Public Vote on Legalizing Physician-​assisted Death.” Cambridge Quarterly of Healthcare Ethics 2, No. 1 (1993): 63–​67. Mitchell, John B. Understanding Assisted Suicide:  Nine Issues to Consider. Ann Arbor, MI: University of Michigan Press, 2007. Netherlands Ministry of Welfare, Health and Cultural Affairs. Medical Practice with Regard to Euthanasia and Related Medical Decisions in the Netherlands: Results of an Inquiry and the Government View. Rijswijk, Netherlands: Ministerio van WHC, 1992. Oregon. “Oregon Death with Dignity Act [Ballot Measure 16].” Trends in Health Care, Law and Ethics 9, No. 4 (1994): 29–​32. People v. Kevorkian, 447 Mich. 436, 527 N.W.2d 714 (1994). Pope Pius XII. “The Prolongation of Life: An Address of Pope Pius XII to an International Congress of Anesthesiologists.” The Pope Speaks 4 (1958): 393–​398. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to Forego Life-​Sustaining Treatment:  Ethical, Medical, and Legal Issues in Treatment Decisions. Washington, DC:  U.S. Government Printing Office, 1983. Quill et  al. v.  Vacco et  al. Docket No. 95–​7028, United States Court of Appeals for the Second Circuit (1995). Quill,Timothy E., and Margaret P. Battin, eds. Physician-​Assisted Dying: The Case for Palliative Care and Patient Choice. Baltimore, MD: Johns Hopkins University Press, 2004. Shannon, Thomas A., ed. Death and Dying:  A Reader. Lanham, MD:  Rowman & Littlefield, 2004. Van der Maas, Paul J., Johannes J.  M. Van Delden, Loes Pijnenborg, and Casper W. N. Looman. “Euthanasia and Other Medical Decisions Concerning the End of Life.” The Lancet 338 (1991): 669–​674. Veatch, Robert M. Patient, Heal Thyself: How the New Medicine Puts the Patient in Charge. New York: Oxford University Press, 2009.

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9 DEATH AND DYING FOR PATIENTS WHO ARE NOT THEIR OWN DECISION-​MAKERS

LEARNING OBJECTIVES FOR THIS CHAPTER (1) Distinguish types of mentally incapable patients and explain why these differences matter for approaching end-​of-​life decision-​making. (2) Recognize forms of advance care planning and their limitations. (3) Apply ethical standards for surrogate decision-​making in order to respect the known values and interests of mentally incapable patients.

When describing a patient as mentally “capable” or “incapable” in clinical contexts, there are two kinds of relevant designations (sometimes used interchangeably in the bioethics literature but increasingly separated). Someone could be said to be competent, which means there is a legal presumption that the person has the ability and authority to make their own decisions, which occurs at the age of 18 in the United States (unless a judge determines otherwise). In addition, someone could be assessed to have capacity, which means a clinical determination has found that the person adequately understands, appreciates, reasons through, and communicates a stable choice in relation to a healthcare decision (Appelbaum, 2007; Buchanan and Brock, 1990). A person who is competent in the above sense may or may not have capacity, since any number of conditions can undermine capacity in an otherwise competent individual—​intoxication, an episode of acute psychosis, traumatic brain injury, or delirium, for example. Incapacity can be temporary or fluctuating or permanent. If someone is found to be regularly incapable of being a decision-​maker, for example due to advanced dementia, a judge may declare that they no longer meet the criteria for competence (for some or all decisions). A legally and ethically complex conundrum emerges when an adolescent seems

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to have a robust understanding of his or her medical condition and the different treatment options, such as when the minor has had a chronic illness since a young age, but the adolescent is nonetheless incompetent under the law and thus cannot have the ultimate decisional authority. Clinical capacity assessments carry hefty ethical implications. Whenever healthcare professionals have the authority to determine a patient’s capacity status and then grant or remove decisional authority on that basis, any error could lead to significant harms or wrongs. If a physician incorrectly determines that a patient lacks capacity, then the patient would have decision-​making rights unjustly taken from him or her when the patient should be expected to understand his or her interests better than the physician. And if a physician incorrectly determines that a patient has capacity, then the patient might try to make decisions that undermine the patient’s actual interests or values without adequately understanding or appreciating or reasoning through the situation. If a minor or other person who is legally incompetent is deemed by the physician capable of making crucial decisions, such as those involving life and death, the question arises of whether it would be better ethically for there to be judicial review. When there is a match between legally competent status and the clinician’s judgment about capacity, things are relatively simple, but problems arise quickly when they do not converge. When a patient classified as competent by the law is deemed by the clinician to lack capacity to make a particular decision, the legal and ethical situation is complex. Likewise, when a patient classified as legally incompetent appears to the clinician to have the capacity to make a particular decision, problems may arise. Almost everyone agrees that both lay people and healthcare professionals have limited authority to intervene within their capability to stabilize a situation when a competent person appears not to be capable of understanding the situation and making a reasonable choice. Lay people can restrain someone about to jump from a bridge to commit suicide in order to permit an assessment of the person’s mental state. Likewise, in an emergency, clinicians are permitted to use their judgment to stabilize a patient appearing to make an irrational decision that threatens grave bodily harm to themselves or others. The problem is more complex after the patient is stable and the emergency has subsided. If the patient concurs with the professional’s judgment that the patient lacks capacity, or if the patient is incapable of communicating (for example, due to a coma), normally we can proceed relying on the appropriate surrogate decision-​maker. If the patient actively rejects the clinician’s assessment that the patient lacks capacity, a significant problem exists. Some believe that the clinician can and should continue to turn to a surrogate decision-​maker (when available) even though the patient has never been found incompetent by a judge, as long as the patient lacks the capacity for the decision at hand. Others insist that as soon as the patient is stable, it is ethically important to seek court review if the patient is to be treated without consent. Otherwise, a legally competent patient

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can have life and death decisions made against his or her will without due process. This chapter deals with patients who have properly been deemed mentally incapable of making their own choices, either because they are legally presumed incompetent or because a clinician has properly determined the patient is not capacitated and judicial review, if deemed appropriate, has occurred. Different jurisdictions have different policies regarding whether judicial review is necessary in these cases. Since continuing to make decisions for patients classified as competent raises profound moral questions about the rights of such patients, we need to be clear on how to proceed. What we say in this chapter about patients mentally incapable of decision-​making presumes that the correctness of the clinician’s judgment of capacity has been adequately established, by judicial review if necessary. A fair amount of agreement exists today about the things said about mentally capable patients in the previous chapter. Although debates occur about the ethics of active killing including assisted suicide, people generally accept with relatively little controversy the framework presented in Chapter 8 for analyzing decisions made by mentally capable patients. For mentally incapable patients, by contrast, the situation can be one of moral chaos, where physicians and others often do not know how to handle the treatment stoppage decisions. One reason for the chaos is that there are three separate kinds of mentally incapable patients. Each must be handled differently. This chapter first considers formerly capable patients, then never-​capable patients without available family or other pre-​existing surrogates, and finally never-​capable patients who do have family. The ethical principles and legal standards used to guide decisions for each group are summarized in Figure 19.

Formerly Mentally Capable Patients Some patients who are presently mentally incapable were once capable. Some of them may have expressed their wishes while capable. The first task in caring for a mentally incapable patient is to find out whether that is the case.This can be done

Type of Patient

Ethical Principle

Legal Standard

Formerly mentally capable

Autonomy extended

Substituted judgment

Never mentally capable without family Never mentally capable with family

Hippocratic utility

Best interest

Limited familial autonomy

Limited familial autonomy

FIGURE 19  Types

of Mentally Incapable Patients and the Standards Used in Surrogate Decisions

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orally, by talking to other people who know the patient, or by checking to see if the patient completed any advance care planning. Advance care planning is the process where a mentally capable person documents their healthcare wishes if they were to lose the ability to decide for themselves. This is increasingly done today with what is called an advance directive (Cantor, 1993; President’s Commission, 1983). An advance directive is a documented expression of the patient’s wishes. An advance directive has two parts:  living will (or substantive directive) and healthcare power of attorney (or proxy directive). A mentally capable person can fill out either of these parts of an advance directive. One can also combine these two forms of directives into a single document that serves both to specify the general types of treatment one would want and names someone to interpret one’s wishes in cases of ambiguity. A living will, or substantive directive, records the patient’s substantive wishes about medical treatment. Usually, but not always, it is designed to apply when the patient is terminally ill or in a permanent vegetative state (a brain disorder where there is no sign of awareness, and there is no expectation of recovery). Patients can write out certain things they would not like.Ventilators, chemotherapy, medically supplied nutrition and hydration, and other means of aggressive life-​sustaining treatments are often mentioned. They can also record certain treatments that they would want to have provided. These may include palliative care, but could also include medically supplied nutrition. If a patient has unusual desires to receive life-​sustaining technologies, it is important that those wishes be recorded because, increasingly, the norm is not to provide them for terminally ill and permanently unconscious patients. A healthcare power of attorney, or proxy directive, specifies the person to serve as a surrogate decision-​maker in the event the patient is unable to speak for himself or herself. An advance directive naming a proxy is particularly crucial for those who do not want their legal next of kin to be their agent. Because legally the spouse is the next of kin, feuding spouses may want some other relative or friend to function as decision-​maker. A person with an incapacitated spouse or one for whom taking an active role as decision-​maker would be too much of a burden may wish to name someone else; a brother or sister, an adult son or daughter, a friend, or someone else may be so named. Another type of advance care plan is a portable medical order, which includes Do Not Resuscitate Orders and Physician/​Medical Orders for Life-​ Sustaining Treatment (POLST/​MOLST, although they go by other names as well). For patients at increased risk for life-​threatening medical events, a portable medical order travels with the patient to make his or her wishes known to emergency personnel and other healthcare professionals. For example, someone with severe heart disease might not want resuscitation in the event of cardiopulmonary arrest, but emergency medical services (EMS) and the accepting hospital assume that someone wants to be saved in the case of arrest when the patient cannot speak for him-​or herself. An advance directive does not affect how EMS provides care, but a portable medical order does. Another significant difference between

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an advance directive and portable medical order is that the latter is signed by (1) a patient or an appropriate surrogate and (2) an authorized healthcare professional. All advance care planning should follow from a careful conversation about diagnosis, prognosis, treatment options, and goals of care. Because the portable medical order has to be signed by a healthcare professional, there is more assurance that that conversation has occurred (whereas advance directives can be filled out at any time, even online without a healthcare professional present).

The Principle of Autonomy Extended A decision that is made while mentally capable is usually deemed valid and binding when one becomes mentally incapable. It is extended into the period of incapacity or incompetence. The moral principle underlying this form of advance decision-​ making could be called the principle of autonomy extended. Whether it is legitimate to extend that autonomy has recently become a matter of increasing controversy. Cases in which the patient has become so cognitively impaired that no memory of the former self remains pose a particular difficulty. Consider a patient with advanced Alzheimer’s who may be quite content with a new lifestyle, even though the former self who filled out an advance directive would have militantly refused to continue life in the patient’s present form. We usually assume today that the advance directive is still binding, but some would argue that in some cases the contrary policy should be followed (Buchanan and Brock, 1990, pp. 184–​189; Dresser and Robertson, 1989).The issue is whether the autonomous decisions of the individual made while mentally capable should continue to control after the individual’s life and values have changed radically and the individual has become mentally incapable. If one thinks of the present person as radically different from the one who wrote the directive, the tendency will be to question the moral authority of the directive. Some go so far as to say that the mentally incapable individual may actually have become a “new person” to whom the advance directive written by the “other person” does not apply. It is in those cases, in particular, that questions have arisen about the status of advance directives. On the other hand, one might view the entire life of the writer of the directive as a biosocial whole, so that there is continuity even if the person cannot presently remember the writing of the directive, in which case the directive should control the decisions made on behalf of the now-​mentally incapable individual.

Substituted Judgment For formerly competent and capacitated persons, we talk in law and ethics about substituted judgment. A substituted judgment is one made by a surrogate decision-​maker based on the patient’s beliefs and values. If a living will or substantive advance directive exists, it fills the gaps, the ambiguities, by drawing on what is understood to be the patient’s value framework.

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For example, if a surrogate knows the patient would not want a ventilator even though the surrogate would find the ventilator appropriate, the surrogate must refuse the ventilator for the patient. A living will or substantive advance directive is supposed to express the patient’s own unique beliefs and values. Some of them may make no sense to the healthcare professional at the bedside who may not understand the patient’s values. The clinician needs to rely on the surrogate’s substituted judgment, drawing on the patient’s own beliefs and values to try to do what the patient would have chosen had he or she been able to speak competently. When there is ambiguity or doubt about what the patient would have wanted, we give the benefit of the doubt to the surrogate, but the surrogate who seems clearly to misinterpret the patient can be challenged, in court if necessary, and overruled in cases of well-​established error.

Going Beyond Advance Directives A patient may be in a jurisdiction without a statute authorizing an advance directive. Some countries have no relevant statutes at all. All states in the United States now have statutes or case law that authorize advance directives (Choice in Dying, Inc.), but some of those states cover only very special circumstances. For instance, in many states the law only applies when the patient is terminally ill. That limitation may not appear to be a problem, but the law usually defines terminal illness very narrowly.To be terminally ill, a person must be dying in a relatively short time period regardless of life-​supporting therapy. A person who is stable in a permanent vegetative state is technically not terminally ill, yet someone anticipating the possibility of ending up in that situation may still want the advance directive to apply. Is there a way advance directives can be used even though they are not covered by state statute? Whether the patient is terminally ill or not, if the correct moral principle is autonomy extended and the patient’s wishes can be surmised, then those expressed desires ought to be followed. Under common law in British and U.S. legal traditions, the choice of the patient to refuse a treatment is binding, even though not in writing. In the U.S. Supreme Court decision in Cruzan v. Director, Missouri Dept. of Health, the court said, “For the purposes of this case, we assume that the United States Constitution would grant a competent person a constitutionally protected right to refuse lifesaving hydration and nutrition.”While this is not a definitive conclusion from the court, it suggests where the court will come out, and it extends even to nutrition and hydration, so refusal of other, less controversial treatments would almost certainly be protected. Especially if the patient’s wishes are not in writing, the clinician needs to make sure that the surrogate really is expressing what the patient wanted. In rare cases, if doubt exists about what the patient wants and there is no agreement among the relevant parties, they may actually have to go to court to clarify whether the surrogate is interpreting the patient’s wishes correctly.

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CASE 18 TERRI SCHIAVO: THE ROLE OF RELATIVES IN REFUSING A FEEDING TUBE On February 25, 1990, 27-​year-​old Terri Schiavo suffered a cardiac arrest. At the hospital it was determined that she was experiencing hypokalemia, a potassium imbalance. It may have resulted from an eating disorder. There were also unsubstantiated charges of abuse that were discounted in later hearings. As a result of the hypokalemia, she suffered massive brain damage (anoxic-​ischemic encephalopathy). On June 18, 1990, Michael Schiavo, her husband, was appointed guardian. In November he took her to California for unsuccessful experimental brain stimulator treatment. Eventually, tensions emerged between Mr. Schiavo and his wife’s parents over treatment decisions. In May 1992, Michael, who had been living with Terri’s parents, moved to another residence. In November of that year a million-​dollar malpractice award was granted related to the inadequate care Terri received when she first received emergency treatment. An amount of $300,000 was awarded to Michael; $750,000 was used to create a trust fund for Terri’s future care. In May 1998, Michael Schiavo petitioned the court asking that her feeding tube be removed, claiming this was based on her expressed wishes about how she would want to be cared for. He claimed his wife was in a persistent vegetative state. Both this diagnosis and the view that she would want the feeding tube removed were challenged by Terri’s parents, Bob and Mary Schindler. Many court reviews followed. Over the next seven years, 20 judges reviewed the case. By the year 2000, the court had concluded that she was indeed in a persistent vegetative state and that her previously expressed wishes had been that the feeding tube should be removed in such a circumstance. After many years of court review, including appeals to the U.S. Supreme Court and after several temporary removals of the feeding tube, it was removed for a final time on March 18, 2005. Terri Schiavo died on March 31.

This case illustrates many of the issues in decision-​making for a critically ill patient who lost her ability to make decisions for herself. Her next of kin, her husband, Michael, was assigned as her court-​appointed decision-​maker. He could have been disqualified if he had been found abusive or if he was being influenced by a conflict of interest related to the existence of a trust fund that he might inherit. These issues were reviewed many times, and the courts decided that he should remain her guardian. Terri’s parents, although not her next of kin, had a relevant interest in her well-​being and were given ample opportunity to try to show that she was not in a vegetative state or that she would not have wanted the

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life-​supporting feeding tube removed. After careful review, neither of these claims was found proven by the court. It is noteworthy that, if the court can determine what Terri’s wishes were, neither her husband’s nor her parents’ views about what would be best for her are decisive. The role of the family members was to help determine her wishes. In doing so, her guardian’s opinion was given a special place because he gave sufficient evidence of what her wishes were. It is unclear what the courts would have done had, contrary to fact, they determined she was not truly vegetative, but in what is sometimes called a “minimally conscious state.” Although some might assume that if she were even minimally conscious, then the life-​sustaining treatment should continue, others might claim that this would be even stronger reason to withdraw the feeding tubes. The court would have to first try to determine if she had expressed her wishes about such a decision. If not, the choice would pass to her valid surrogate—​a role discussed later on in this chapter. The principle of autonomy suggests that a person ought to be able to decline treatment even if he or she is not dying rapidly, even if he or she has not reduced her views to writing, and even if he or she is refusing something that is not covered under a state advance directive statute.

Mechanisms for Expressing Wishes Advance Directives The Euthanasia Educational Council’s “Living Will”. The written advance directive had its origins in proposals for what was originally called a “living will.” First proposed by Luis Kutner in the 1930s, the written instructional directive was promoted starting in the 1970s by the Euthanasia Educational Council, an organization that actually focused on forgoing of life-​support rather than active killing for mercy. It used the language of “artificial or heroic means,” terms that are now thought to be too ambiguous for such documents. The model implies that one type of refusal is the answer for all persons and that refusing treatment was the only thing one would ever want to do. (Now we understand that people may have varying and idiosyncratic preferences regarding terminal care—​including a desire to have aggressive life support continue. They may consider writing a directive insisting on treatments.) It and other advance directives are prospective rather than ad hoc; that is, they normally state wishes while one is still healthy, before one knows exactly how one will die. They are therefore often rather vague and fail to speak to specific issues of an individual’s terminal care. One physician, who had an unusual capacity to understand the nature of the choices involved, was able to be more specific. He refused life-​sustaining treatments in the event of a cerebral vascular accident, but then excluded “cerebral vascular accidents of the subarachnoid space.” Another physician, in his advance directive, rejected artificial respiration to prolong life: “if I have lost the ability to

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breathe for more than two or three (not five or six) minutes.” Most of us would not know the difference between three and five minutes of anoxia well enough to write such specific instructions. It is for problems such as this that a proxy who understands the patient’s values is often needed. An advance directive was, in its original form, permissive rather than mandatory. It authorized the physician to stop rather than instructing that he or she must stop. Now most advance directives are firmer in specifying what the patient wants, giving instructions rather than mere permission. Catholic Health Association.The Catholic Health Association at one time produced a document in which the operative sentence was identical to that of the Euthanasia Council’s living will. It stated that if “there is no reasonable expectation of my recovery from physical and mental disability, I request that no extraordinary means be used to prolong my life.”That document has now been replaced by a pamphlet that assists people in preparing their own advance directives (United States Catholic Conference, n.d.). Since advance directive forms are now state-​specific, a general form can be limited in its usefulness in certain jurisdictions. Many state Catholic Conferences now have their own forms that reflect the laws of the individual states.The U.S. Catholic Conference pamphlet continues to affirm the right of patients to make their own decisions about forgoing life-​sustaining treatment (including nutrition and hydration) while explicitly rejecting physician-​assisted suicide and what it calls “euthanasia,” by which it means intentionally acting to end life (see the previous chapter for more on this debate). The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. The 1983 report on Deciding to Forego Life-​ Sustaining Treatment of the President’s Commission (p. 136) endorsed a combined substantive and proxy directive. Such proposals had existed since the mid-​1970s (Bok, 1976; Veatch, 1976). Other national bioethics groups including the Bioethical Advisory Committee (1988–​ 1990), National Bioethics Advisory Commission (1996–​2001), and the President’s Council on Bioethics (2001–​2009) have not pursued the issues of terminal illness decision-​making further. Problems with Advance Directives. A  number of problems have been raised with advance directives. A  central question is whether someone’s wishes necessarily remain morally valid after he or she permanently becomes incapacitated or incompetent. Another question is whether an advance directive form can adequately capture variations and nuances of a person’s particular wishes. This has been addressed by encouraging an individually tailored advance directive, by using forms that allow flexibility for the proxy, open-​ended questions, and explicit patient preferences in a range of medical scenarios (Emanuel and Emanuel, 1989), or by using value assessments that attempt to produce a written record of the patient’s values pertaining to terminal care (Doukas and McCullough, 1991; Kielstein and Sass, 1993). An inevitable concern with advance directives is that they cannot cover all possible medical circumstances, which means that the proxy/​

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surrogate and healthcare team might not have clear guidance when reading the instructions of the advance directive. Also, what someone documents as his or her wishes at a given time might not be well informed; especially when illness, pain, or impairment is a new condition, it can be nearly impossible to grasp what life will be like, so imagining what medical interventions one would want under those circumstances can be highly limited. A similar problem is that documented wishes might not be up-​to-​date with how the person’s values and life plans have changed over time. Because of all these limitations, there has been debate on how much weight advance directives should have in governing care decisions.

Legislation As an alternative to individually prepared advance directives, some people have advocated legislation clarifying the legal options for terminal care decisions. Attempts to Legalize Active Mercy Killing and Assisted Suicide. Some of the boldest, if most crude, attempts at legislation have been designed to legalize active killing for mercy. This was tried without success in Great Britain in 1937, followed in 1947 by an equally unsuccessful attempt in New York, then in Idaho in 1969, in Montana in 1973, and in Oregon in 1973. None had gotten anywhere until recently when, as described in Chapter 8, the strategy has shifted, attempting to legalize only physician assistance in suicide of terminally ill, mentally capable patients. At that point the Washington Initiative (1991) and the one the following year in California, both of which were limited to assisted suicide, were narrowly defeated before Oregon passed such an initiative in 1994, a decision reaffirmed by the state in 1997. Since then other states have legalized physician-​assisted suicide by an initiative placed before the voters or through court decision. Meanwhile, international developments in the Netherlands, Belgium, and Luxembourg have, in effect, legalized active killing for mercy, exempting physicians from prosecution for committing euthanasia provided proper procedures are followed. Natural Death Act Legislation. Before this recent legal activity directed toward physician-​assisted suicide and active killing for mercy, most legal activity had been designed to clarify the status of advanced directives for terminally ill, formerly mentally capable patients. All U.S. jurisdictions now have this type of legislation, providing either substantive or proxy directives. They generally make clear that an advance directive written while the individual is mentally capable is valid and must be obeyed provided certain conditions are met (including provision for confirmation of diagnosis and prognosis). More generally, in the United States competent and capacitated patients have the legal right to refuse medical treatment offered for their own benefit, and valid surrogates have the right to make such decisions on behalf of mentally incapable persons.

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Issues to Be Addressed in an Advance Directive The most important lesson from the past two decades of discussion of advance directives is that they need to be specific to the values and desires of the individual person. However, several categories of information should be covered.

What Treatments Are Being Refused? If the writer of an advance directive simply refuses “extraordinary” means, he or she is begging for trouble in interpretation. Extraordinary can mean many different things to different people (see the previous chapter for more on this term). Such language should be avoided. Even references to “machines” are ambiguous. Specific machines should be named, if they are to be excluded. Is an intravenous drip a “machine” or is the reference only to ventilators and dialysis machines? Does a refusal of machines imply a desire for other kinds of treatment such as antibiotics for infection, surgery that is meant to be an attempt to cure, or radiation? If one refuses CPR (cardiopulmonary resuscitation), is that refusal meant to apply to temporary and potentially reversible situations resulting from choking, an anesthesia accident, or an accidental drug overdose? Another traditional term is gravely burdensome. It makes sense to say that one wants to refuse gravely burdensome treatments, but one must be aware that such terms are subject to tremendous variation in interpretation. At least one should designate whose judgment about grave burdens should be governing. If someone writes an advance directive refusing gravely burdensome treatments, does that mean the writer refuses only if the burden is very large, only if the burden is much larger than the benefits, or all treatments with an excess of burden over benefit? Advance directives should make clear whether the writer is refusing (or accepting) food, fluids, antibiotics, and CPR and under which circumstances. Since it is very difficult to anticipate all possible circumstances, it is particularly important that the right person be named to interpret what the patient really wants.

What Treatments Are Desired It is at least as important to specify which treatments are desired and when. Does the writer of the advance directive want medically supplied nutrition (such as through a tube surgically placed into the stomach)? What about oral nutrition? Is fluid necessary for the purpose of keeping the patient alive or only for comfort and who is to determine whether it is needed for comfort? If the person has refused surgery, does that include pain relieving surgery? An advance directive can help make it clear to family when the individual wants to receive palliative care (focused on symptom and pain management) and hospice care (focused on comfort at the end of life).

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A new problem has arisen with advance directives that refuse life-​sustaining treatment. Many who would normally refuse such treatment also would like to be organ donors if the circumstances permit. In some cases, however, organs are preserved better if some treatments are provided temporarily—​ventilator support or vasopressors, for instance. Many who write directives refusing all life-​sustaining treatments would really want these measures to help preserve organs even if it briefly extended life. In such a case, an advance directive should include a proviso that life support can be administered temporarily for the purpose of preserving organs. Otherwise, the treatment team may feel forced to follow the treatment-​refusing directive and damage potentially valuable organs.

When Should the Directive Take Effect? The standard language of an advance directive is that it should take effect only when the patient loses mental capability and is terminal and dying imminently. That may be what some people have in mind, but for others that is the time when an advanced directive becomes irrelevant. If the patient is going to die soon regardless of treatment, then it is too late to make the decision to avoid prolonged dying. Does the advance directive include cases in which the person might be permanently vegetative, but not terminally ill in the sense of dying imminently regardless of treatment? Does it ever come into effect when the person is neither dying nor vegetative, such as when the patient is experiencing prolonged painful illness or gradual neurological degeneration? Should it come into play whenever the surrogate decides, regardless of patient diagnosis as long as the patient is not able to speak for himself or herself? Recent medical literature recognizes that some people previously thought to be permanently unconscious are actually “minimally conscious.” Should an advance directive ever come into effect in such a case or would the writer want life-​sustaining treatment to continue?

Is a Healthcare Power of Attorney to Be Appointed? Is a healthcare power of attorney (a proxy) to be appointed and, if so, is there a secondary proxy? If two or more are named, must their decision be unanimous or can anyone authorize nontreatment? What happens if they disagree? In choosing a proxy, one has to consider who will likely remain involved in his or her life, who can interpret the advance directive well, and who will be willing to carry out the individual’s wishes despite any personal objections the would-​be proxy might have. Some people may have special concerns that will lead them to include other items in their advance directive such as the hospital (or jurisdiction) in which the person wants to receive treatment, what physicians or lawyers should be consulted, what ethics consultants the individual would like involved, whether there should be consultation with a priest, neighbor, teacher, or other trusted confidant, and whether treatment refusal is based on common law or statute or both.

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Patients Who Have Never Been Mentally Capable and Who Have No Available Family or Other Pre-​existing Surrogates Among mentally incapable patients, cases of those who were formerly capable are not the most difficult to resolve. A second group, those who have never been mentally capable and are without anyone who could act as surrogates, may pose a greater challenge. These could be elderly people with no living relatives, adults estranged from family, or even isolated, orphaned, or abandoned children.We shall take this group up before turning to never-​capable patients with family. We can include in this group those without surrogates who were once capable but have left no record of their wishes upon which a substituted judgment could be made. In terms of what we know about their wishes, it is as if they had never been mentally capable.

The Principles Morally, the principle to be used with patients who have never been mentally capable cannot be autonomy. By definition, autonomy is impossible in this group. We must revert to the next principle, which is to maximize the patient’s net welfare; that is, the principle of individual (Hippocratic) utility (see Figure 19). Using this principle, however, requires some assumptions. Most individuals who are not mentally capable of healthcare decision-​making still have interests. In the case of the most severe cases of incompetency and incapacity (such as anencephaly), however, some would question whether it is meaningful to speak of interests at all. Even when a mentally incapable patient does have interests, there must be agreement on what counts as welfare for the patient. We must believe enough agreement exists on a theory of value to determine what is in this individual’s interest. We are not merely interested in medical welfare (although that, by itself, would be difficult to determine). We saw in Chapter 6 that reasonable people will normally want to trade off medical for other kinds of welfare.

The Legal and Ethical Standard In both law and bioethics, the standard is called the best interest standard. The goal is to choose the option that offers maximal net benefit over net harm for the patient (or to use one of the other strategies for integrating judgments of benefit and harm discussed in Chapter 6)—​at least until we move to the level of social ethics and consider whether social utility or justice can ever dictate limits on pursuing the best interest of such patients. Some people are beginning to doubt whether we must do literally what is best for such patients. Not only social considerations but also pragmatic patient considerations suggest possible limits. It seems unlikely that we would be required to fly a patient to Bethesda for the latest research protocol or to call in the best surgeon in the world to treat an

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almost certainly fatal condition if doing so created enormous burdens for others. Whatever decision-​maker is identified, it is possible that the decision-​maker will come up with a treatment plan that will provide somewhat less than the absolute best possible outcome for the patient. If the decision-​maker has missed by very far what to others seems like the best treatment, some review will be needed, but small deviancies will probably be overlooked.

Who Should Be the Surrogate? The critical question is who the surrogate should be for a patient who has never had mental capability and has no available family. Presently no clear answer exists. As we have seen, there is no basis for assuming that the attending physician (or anyone else) has the authority to speak for this group of patients. We have two options. First, we could pass a law naming the primary physician the default surrogate. Still, there is no reason why a physician assigned to the patient should be authoritative in deciding the patient’s best interest. In fact, physicians may have systematic biases inclining them toward certain decisions that may be contrary to the patient’s real interest. In the 1950s and 1960s, for instance, physicians tended to have a strong commitment to preserving life at all costs. More recently, tendencies may be appearing to avoid what clinicians deem to be “futile treatments.” Even if there are no systematic biases in the physician population as a whole, individual biases will always be present. One physician may be aggressively pro-​treatment while the one on duty on the next shift may be equally militant in his or her decision to transfer the patient to a hospice. There is no reason why this group of patients should be subject to these random variations. A second argument against using the attending physician as de facto surrogate concerns the physician’s role as one to protect patients from irresponsible surrogates. The primary physician is in the best position to be a check on the surrogate, whoever that may be. While he or she should not have the authority to override a surrogate, the clinician at the bedside can certainly insist on an outside review of the surrogate’s judgment. If the physician becomes the surrogate, that check is lost. An alternative would be to rely on a hospital ethics committee. Such committees have existed since the time of Karen Quinlan in the 1970s. Hospitals have appointed such committees made up of clinicians (physicians, nurses, social workers, and others) as well as perhaps a chaplain, a medical ethicist or philosopher, and lay people including sometimes family members of patients for whom critical decisions have been made in the past. A hospital ethics committee has the advantage of avoiding idiosyncratic biases of individual clinicians. Such committees raise problems, however. While they may avoid idiosyncratic biases, they are likely to reflect the moral orientation of the sponsoring hospital. A Jewish or Catholic hospital, for instance, would, even if it attempted to appoint a committee made up of a wide range of moral perspectives, tend as a whole to

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reflect the moral perspective of the sponsoring institution. Even a secular, public hospital might reflect some moral consensus not necessarily shared by all patients or by the community. There may or may not be a legal basis for such hospital committees to claim the authority to decide whether to forgo life-​sustaining treatments for one of its patients any more than an individual clinician can. The alternative is to insist that a guardian be appointed legally for this one narrow class of patients if any healthcare decision needs to be made, including (and especially) a decision to forgo life-​sustaining treatments so that the patient may be allowed to die. If someone believes that a seriously ill patient who has never been mentally capable and has no family would be best served by having life-​sustaining treatments ended, perhaps a guardian should be formally appointed before that belief is acted upon. This group of patients is particularly vulnerable. They deserve special precautions, and many argue that this is the type of case where it would be better to err on the side of caution. In this kind of case, the court can appoint an independent third party who has received special training as a guardian. The guardian then tries to learn what he or she can about the patient and works with the healthcare team to find medically and ethically reasonable options.

Patients Who Have Never Been Mentally Capable and Have a Surrogate This leaves us with a third group of patients for whom a decision-​making structure must be found: those who have never been mentally capable (or have never expressed themselves while capable) but have family members or others available to function as surrogates. The consensus is that the next of kin should be the presumed surrogate in such cases (Areen, 1987; President’s Commission, 1983).They should serve until they have demonstrated to be unable or unwilling to make decisions reasonably consistent with the patient’s interests. It seems clear that the family should try to serve the best interest of the patient. What happens, however, when there is a difference of opinion about what is in the patient’s best interest?

Disputes about What Is Best for the Patient Disagreements about a patient’s interests can pop up among healthcare professionals, between the physician and the family, or even between the mentally incapable patient and those who are authorized to make decisions on his or her behalf.What is deemed “best” will depend on what aspect of well-​being is being prioritized, such as medical well-​being or religious well-​being (see Chapter 6 for more on spheres of well-​being). Moreover, adults and older minors (such as adolescents) who have never been their own decision-​makers can still have preferences and meaningful activities and a sense of self, which can make applying the best interest standard easier or more challenging, depending on whether what the

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patient expresses coheres with what the family believes is best. When it comes to parental decision-​making, they are expected to act on what is in the best interest of their child, but healthcare professionals and parents can quickly disagree on what the relevant interests are or how to weigh those interests.1 Take the situation in the case at the beginning of this volume of Jahi McMath, the 13-​year-​old who, following throat surgery, lost so much blood that she suffered massive brain damage to the point that her clinicians wanted to declare her dead based on neurological criteria.We saw in Chapter 3 that there was a dispute about whether she met California’s brain-​based criteria for pronouncing death, but that, in any case, Jahi’s mother, Latasha Winkfield, believed that even if she had irreversibly lost all brain functions, she should not be called dead until circulatory function was lost. In fact, Mrs. Winkfield believed that Jahi should receive what she considered to be life-​sustaining treatment. She eventually gained control when Jahi, after being pronounced dead, was released to Mrs. Winkfield while Jahi was still on a ventilator. She was transferred to the state of New Jersey where, at least according to some interpretations of the law, Jahi was considered still alive. This raises the question of who—​the physicians, an ethics committee, Mrs. Winkfield, or a state-​appointed guardian ad litem—​should have the authority to decide whether such support should continue. In cases like this, and especially in cases in which patients are by all accounts still living, the clinicians would have to admit ventilatory support might be effective in changing the dying trajectory of this patient. It seems like the proper criterion for deciding is what is in the interest of the patient. Some clinicians may try to claim that at least those patients who are permanently unconscious are beyond benefit. Other observers disagree, however. In the case of mentally incapable patients who are still conscious or can regain consciousness, all would agree that the patient has interests. Some would emphasize the future pain and suffering, but others would focus on the positive value of life. Some, particularly, members of religious groups, see great value in life, even unconscious life.That appears to be the position of Mrs. Winkfield. She can make a case for benefit, at least from her point of view. There seems no medical basis on which to refute the claims that unexpected results can occur. Nor are there any grounds for refuting the family’s claim that all life, even permanently unconscious life, is precious. The clinicians can counter with the claim that further life-​sustaining treatments will almost certainly not permit the patient to emerge from a coma, but that is not the same as proving that the treatment will do no good. The latter claim is surely not a scientific medical fact; it is a value judgment—​a widely accepted one, but one not universally held. The physicians might try to argue that continuing treatment is not the best course for the patient, although showing why it is contrary to the patient’s interest to continue treatment is difficult. When a patient is unconscious and cannot suffer from the interventions, it is a particularly difficult task. Some clinicians have attempted to claim that it is a “moral affront” to continue treatment in such cases, but against that claim, one would have to consider whether it would also be a “moral affront”

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to rely on the medical establishment or the state to allow the child to die (or, alternatively, to be treated as dead) against the parents’ wishes. What happens when the family makes what, in the eyes of clinicians, appears to be less than the best choice? The family may be the legally designated surrogate decision-​maker, but surrogates do not have unlimited discretion in making medical choices for their wards.There seem to be two options. First, society could insist that the surrogate choose what most reasonably is the single best course—​ as determined by a court or some other authority. Determining what is the best course may be difficult, but it is a standard often advocated. At first, this seems like the appropriate policy. Otherwise family is held to a lower standard than the court in the cases involving patients who have never been mentally capable and have no available family. However, if the family must choose the best possible course, it has no choice at all (because some other authority will determine what that single course is and force the family to pursue it). Moreover, every case would have to go to a court or some other authority to determine exactly what is best. This suggests a second course that may be preferable. In the case in which a family member or some other pre-​existing surrogate is making the choice, we could give this person some limited range of discretion among plausible choices. In the case of Karen Quinlan, when Mr. Quinlan was appointed her guardian, he was never told he must turn off the respirator. He and other families are given some discretion. With this option, something less than the best choice will be tolerable. Similarly, in Jahi McMath’s case, her mother was allowed to continue certain medical interventions even though, in this extreme case, the state of California actually considered her deceased. This may raise issues of who should pay for the costs of such treatment, a question that we will consider in Chapter 12. In some situations, insurance may pay. In one well-​known case, that of Baby K, a private insurer voluntarily agreed to pay the costs of continuing life-​sustaining treatment. In other cases, patients may have subscribed to supplemental insurance to cover treatments that would be favored only by a minority. In still other cases, charity covered the costs. That is apparently how Jahi McMath’s treatment was paid for.

What Is the Standard Underlying This Family Discretion? What standard would support granting this discretion to the family or other relevant surrogate? It cannot be literally the best interest standard. That would require overriding parents or other family whenever they were even slightly wrong. The answer seems to be that the standard is some version of the principle of limited familial autonomy. That is what moral theorists are saying. Although the courts have never formally articulated such a principle, their decisions reflect this idea. The family is a fundamental institution in our society. It has limited authority to choose the values for its mentally incapable members. It has the right and duty to commit to a value system in how it cares for mentally incapable members. It need

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not choose the best value system, but some plausible set of values should be transmitted. It has been suggested that the family has autonomy analogous to the individual. However, autonomy for the family is still limited—​even more limited than it is when mentally capable persons are making decisions for themselves. Consider the analogy with what we tell parents about the education of their children. We require that they provide them an education. We expect that it be a good education. We as a society, however, do not monitor every choice, insisting that it be the best possible education. Parents are permitted to choose parochial schools, military schools, or aggressive achievement-​oriented schools. As long as the family is within reason, the state will not second-​guess it. But at some point the society must be willing to say when the family deviates too radically. If the family chooses no formal education at all for its children, the state will intervene and take custody. The autonomy of the family is vitally important, but it is limited. What are the foundations of limited familial autonomy? Some find it in religious traditions, the divine ordination of the family as a fundamental social unit; others locate it in pragmatic considerations such as the probability that the family is more committed to the welfare of the child (or mentally incapable adult) than any other social group, or the need to acknowledge a family’s care for the individual and how they will all be affected by the consequences of decision-​ making by allowing some limited discretion.Whatever the foundation, it is widely agreed it exists. The President’s Commission, for example, says: This society has traditionally been very reluctant to intrude upon the functioning of families, both because doing so would be difficult and because it would also destroy some of the value of the family which seems to need a fair degree of privacy and discretion to maintain its significance. President’s Commission, 1983, p. 215 The nuance of the notion of limited familial autonomy within the limits of reason is suggested by the following case.

CASE 19 CHAD GREEN: THE CASE OF LIMITED FAMILIAL DISCRETION ABOUT CHEMOTHERAPY A two-​and-​a-​half-​year-​old boy named Chad Green developed leukemia that, according to physicians, needed chemotherapy if the boy was to have a chance at survival. The family, however, believed in an alternative diet as a treatment. They felt that the chemotherapy would be too toxic and harmful for their son and that it would fail. They preferred treating his leukemia with a special diet of macrobiotic rice and Laetrile, an extract from apricot pits

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that is believed to be a therapy for cancer by many committed to alternative therapies. When the family refused the recommended traditional chemotherapy, the physician, Dr.  John Truman of Harvard Medical School, felt obliged to seek judicial review. He eventually won a court order taking custody of the child for purposes of providing the recommended therapy. The claim was, in effect, that the parents had exceeded the limits of reason in pursuing what was in the child’s best interest. The boy’s parents protested vigorously, at one point taking the boy to Mexico to obtain the Laetrile. While theoretically they could have been prosecuted, wiser heads determined that no purpose would be served. Dr. Truman continued to pursue the case. He realized that he might be able to work out a compromise that would respect the parents’ views, at least to some extent, and still accomplish the ends he was seeking. He offered to treat the child with the special diet and Laetrile, obtaining safe and clean supplies, if the parents would agree to let him simultaneously administer the chemotherapy. While this did not completely satisfy either party, and neither was convinced that this compromise was the best possible course for the boy, they each realized that it accomplished much of what they were seeking. The court eventually accepted this compromise. The court, in effect, found that even if this was not the best possible course, it was within reason and should be allowed to proceed.2

The notion of limited familial discretion gives us a basis for further analysis of the case of Jahi McMath presented in Chapter 1. As the girl lay permanently unconscious on a ventilator, the physicians were convinced that the best course would be to stop the ventilator. They believed she was already dead or at least that they should let her die. They could not persuade the mother, however, that this was best. Several strategies were available, none of which seemed to offer a satisfactory solution. First, they argued that Jahi was already deceased based on brain criteria for death. Of course, physicians are not normally required to treat a corpse. If the girl were already dead, then treatment could cease perhaps even against the parent’s wishes. As we saw in Chapter  3, brain-​based definitions of death are replacing the more traditional circulatory-​based ones. In this case, however, Jahi’s mother rejected brain-​based death pronouncement. Moreover, at least in the opinion of some of the neurologists who examined the patient, her brain function was not completely lost. The state of New Jersey, where Jahi was moved, apparently had a law permitting her to be treated as alive. Thus, the strategy of declaring the girl dead would not work to settle the disagreement. Second, the medical team could go to court to attempt to have the parents overruled on the grounds that their judgment was not best for the patient. We

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have seen that this approach can work in cases such as that of Chad Green. But in Jahi McMath’s case, showing that the continuation of medical support is contrary to her interests would be difficult. Moreover, they were insisting that she was already deceased. Instead, treatment decisions were transferred to her mother and to clinicians willing to cooperate in what they believed was in her interest. We have just seen that parents are given limited discretion in deciding what is in their child’s interest. In this case, the girl is already, in the opinion of the physicians, permanently unconscious, in fact, deceased, so it is hard for them to show that she would be harmed in any way by continuing treatment. The medical team would likely fail if it went to court on the grounds that the parental judgment was contrary to the patient’s interests. There is still a third possible basis for seeking to override these parents. It could be claimed that the continuation of medical support jeopardizes not the patient’s interests, but the interests of third parties: of the other patients on that unit, of the nurses who have to deliver care, or in some cases of the citizens who were funding the treatment through their Medicaid program. Is it possible that the time has come to begin to set limits on patient care not on the basis of patient well-​being or even patient rights, but on the basis of the interests of third parties? Seeing how third-​party interests might justifiably enter these and other medical decisions is the focus of Chapter 12. The next two chapters analyze the ethics of technologies at the opposite side of the life-​death continuum: genetics and reproductive choice.

Key Concepts Advance Care Planning A process where a mentally capable person makes his or her wishes for healthcare known in case he or she were to lose the ability to make decisions for him-​or herself. Examples include advance directives and portable medical orders. Advance Directive A  documented expression of a mentally capable person’s wishes about medical care, especially care during a terminal or critical illness. It goes into effect when that person is no longer mentally capable, although it does not affect the care provided by emergency medical services. An advance directive has two parts: the living will (substantive advance directive) and healthcare power of attorney (proxy advance directive). Autonomy Extended The moral principle that is sometimes cited as supporting the duty to respect the autonomous choices of persons even after they have ceased to be mentally capable. Best Interest Standard The standard used by a surrogate for medical decision-​ making in cases where the patient’s capacitated preferences are unknown. Such judgments are based on what are taken to be objective beliefs about what is good for the patient.

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Capacity A clinical determination that an individual can adequately understand, appreciate, reason through, and communicate a stable choice in relation to a healthcare decision. Incapacity can be temporary, fluctuating, or permanent. Competence A legal presumption that the individual has the ability and authority to be their own decision-​maker, which occurs at the age of 18 in the United States (unless a judge determines otherwise). Healthcare Power of Attorney (or Proxy Directive) An advance directive that specifies a person to serve as the surrogate decision-​maker in the event the writer is unable to speak for himself or herself. Limited Familial Autonomy The moral principle that grants some discretion when a family makes decisions on behalf of a family member who is mentally incapable of making his or her own decisions. Respecting this form of autonomy or authority means allowing the family to make decisions that may not be medically optimal, although there are still moral limits on this decision-​making. Living Will (or Substantive Directive) An advance directive that records the patient’s substantive wishes about medical treatment, specifying treatments that are desired or refused and/​or criteria for making judgments. Usually, but not always, they are designed to apply when the patient is terminally ill or in a permanent vegetative state.Ventilators, chemotherapy, medically supplied nutrition and hydration, and other means of aggressive life support are often mentioned. Portable Medical Order A document signed by (1) the patient or appropriate surrogate and (2)  an authorized healthcare professional to indicate what forms of medical care should or should not be provided based on the patient’s known values and interests. Unlike an advance directive, portable medical orders affect the care that emergency medical services provide. Do Not Resuscitate Orders and Physician/​Medical Orders for Life-​Sustaining Treatment are examples (although jurisdictions vary in what they are called). Substituted Judgment The standard used by a surrogate decision-​maker for medical decision-​making based on a mentally incapable person’s beliefs and values as they were expressed while the person was capable of expressing them. Surrogate Decision-​maker Someone who has been authorized, one way or another, for making decisions on behalf of a mentally incapable person. A healthcare power of attorney (or proxy) is one type of surrogate.

Bibliography Appelbaum, Paul S. “Assessment of Patients’ Competence to Consent to Treatment.” New England Journal of Medicine 357, No. 18 (2007): 1834–​1840. Areen, Judith. “The Legal Status of Consent Obtained from Families of Adult Patients to Withhold or Withdraw Treatment.” Journal of the American Medical Association 258, No. 2 (1987): 229–​235.

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Bok, Sissela. “Personal Directions for Care at the End of Life.” The New England Journal of Medicine 295 (1976): 367–​369. Buchanan, Allen E., and Dan W. Brock. Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge: Cambridge University Press, 1990. Cantor, Norman L. Advance Directives and the Pursuit of Death with Dignity. Bloomington, IN: Indiana University Press, 1993. Cruzan v. Director, Missouri Dept. of Health, 110 S.Ct. 2841 (1990). Doukas, David J., and Laurence B. McCullough. “The Values History:  The Evaluation of the Patient’s Values and Advance Directives.” Journal of Family Practice 32, No. 2 (1991): 145–​153. Dresser, Rebecca S., and John A. Robertson.“Quality of Life and Non-​Treatment Decisions for Incompetent Patients:  A Critique of the Orthodox Approach.” Law, Medicine, & Health Care 17 (1989): 234–​244. Emanuel, Linda L., and Ezekiel J. Emanuel. “The Medical Directive:  A New Comprehensive Advance Care Document.” Journal of the American Medical Association 261 (1989): 3288–​3293. Hester, D. Micah. “Ethical Issues in Pediatrics.” In Guidance for Healthcare Ethics Committees, ed. D. Micah Hester and Toby Schonfeld. New York: Cambridge University Press, 2012. Kielstein, Rita, and Hans-​Martin Sass. “Using Stories to Assess Values and Establish Medical Directives.” Kennedy Institute of Ethics Journal 3 (1993): 303–​318. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to Forego Life-​Sustaining Treatment:  Ethical, Medical, and Legal Issues in Treatment Decisions. Washington, DC:  U.S. Government Printing Office, 1983. United States Catholic Conference. Advance Directives:  A Guide To Help You Express Your Health Care Wishes. Washington, DC: U.S. Catholic Conference, n.d. [current 2010]. Veatch, Robert M. Death, Dying, and the Biological Revolution. New Haven, CT:  Yale University Press, 1976. [See also revised edition, 1989.]

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10 HUMAN CONTROL OF LIFE Genetics and Modifying Human Nature

LEARNING OBJECTIVES FOR THIS CHAPTER (1) Explain how technological advancements in genetics have prompted ethical questions about our control over human nature. (2) Discuss central ethical challenges faced by healthcare professionals who provide genetic counseling. (3) Analyze the benefits and drawbacks of having more genetic knowledge and capabilities for genetic interventions, at the society level and at the personal level.

Many of the themes already discussed in this book are also relevant to new developments in genetics. Issues of autonomy and consent, veracity, and fidelity in the patient–​healthcare professional relation arise when these technologies are used. We now have the power not only to diagnose genetic disease and advise potential parents about the characteristics of offspring, but also to insert new genetic material into human beings to correct for undesired genes and even attempt to improve on the nature of the species. Yet, there is an additional dimension of bioethics that arises with particular vigor in these contexts of genetics and birth technologies (the latter of which receive more attention in the next chapter):  Should human beings manipulate the very nature of the species? Is it the appropriate role of humans to be active controllers of human nature or should they only enjoy it more passively? Is it the proper role of the human to tamper with creation in ways depicted in the Frankenstein myth or to take charge of nature and shape it for the human’s own ends? Who can be certain what counts as desirable or good traits for humans

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to have? This chapter focuses on these more basic philosophical issues while exploring the ethics of the new genetic technologies. These broader issues cut across the more traditional normative disputes in bioethics about ethical principles discussed in earlier chapters.

Genetics as the Path to Playing God? When Mary Wollstonecraft Shelley created the story of Frankenstein in 1817, she provided an alternative title, The Modern Prometheus.1 Thus, she harkened back to the legend of the Greek god who not only molded the clay figures that became humans, but also stole fire from heaven to make it available to human beings, giving them powers they had never before possessed. The metaphor of “playing God” has become common in the era of the biological revolution.2 It is often used by those who fear that humans are going beyond appropriate limits in remolding or “recreating” the human’s nature. These critics suggest that genetic engineering and the “manufacture” or “fabrication” of new human beings take us beyond the normal mission of medicine—​to save life, cure disease, and relieve suffering.3 They believe that we are on the verge of changing the species so radically that we can be said to be changing its fundamental nature. Others have quite a different set of moral intuitions. They claim that, on balance, humans’ use of science has dramatically improved the human situation and, drawing on another religious metaphor, speak of humans as “co-​creators,” having a moral duty to use knowledge of science not only to combat disease, but also to improve on nature. They opt to make human reproduction and human existence more progressive, rational, and planned.4 For centuries humans have had a vague idea that parents somehow influence the characteristics of their offspring. The science of genetics, which the nineteenth-​ century Austrian botanist and priest Gregor Johann Mendel is credited with founding, provided a basis for beginning to understand the biological influence of parents on their children. Early in the twentieth century, vague notions of inheritance of disease and mental incapacities provided a basis of a eugenics movement leading not only to extermination campaigns in Nazi Germany but also compulsory sterilization laws in 30 U.S. states. In the infamous 1927 U.S. Supreme Court decision Buck v. Bell (274 U.S. 200), Justice Holmes, heavily influenced by the eugenics movement, declared that “three generations of imbeciles is enough.”5 Now in the twenty-​first century, genetic knowledge is growing exponentially, as is access to that knowledge. We have a better understanding of how many diseases, traits, and elements of a person’s lifestyle are not genetic in their origin and, of those that are, many are polygenic; that is, they involve many genes. This means that medical scientists will still have to determine how genes interact in order to address major chronic diseases such as certain cancers, heart disease, stroke, and neurodegenerative diseases. It is likely that we will find that

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the same genes that increase risk of some undesirable conditions also are essential for preventing other equally unattractive outcomes. Although these complexities of health, disease, behavior, and other personal traits are well-​established in the scientific literature, reductionistic tendencies are still rampant in popular culture and the media. Sensationalist headlines tantalize the public with suggestions that there could be one athletic gene, a happy gene, a romance gene, or a gene that determines sexual orientation. In The DNA Mystique (2004), Dorothy Nelkin and M. Susan Lindee describe genetic essentialism as an ideology that reduces humans’ identities to their genetics and shifts responsibility away from social structures to the genetic nature of individuals. Genetic essentialist thinking can influence what public policies receive support, the interpretation of individual genetic information, and reproductive planning. As it becomes more possible to alter our genetic futures, we have to continually reassess our view of human nature and human community.

The Human Genome Project The potential for genetic testing and intervention escalated in 1990 when the United States Congress formally committed to the Human Genome Project. Part of an international genetic research initiative, the project, costing $2.7 billion, mapped 25,000 genes and was completed in 2003. More than 4600 genes have been identified leading to tests for over 11,462 human genetic conditions, and the count is continually growing.6 The goal is eventually to identify the position of every gene in the human body and to be able to intervene in order to diagnose and modify any of those genes. Work in both governmental and private labs is progressing rapidly toward this objective. Because we are likely to be able to diagnose problematic genes before we can remove and replace them or provide other therapy to respond to their impact, the Human Genome Project is viewed with great suspicion by those who believe that abortion and the disposal of unwanted embryos are ethically unacceptable. On the other hand, those who are technological optimists see the possibility of heading off medical problems at their genetic source one by one, thereby leading to a healthier population and great reductions in suffering and medical costs. The crucial question from the point of view of ethics is whether the goal—​full knowledge of the human genetically—​is an ideal worthy of pursuit or a malicious, Promethean quest that takes humans beyond the knowledge that is appropriate for them and opens up possibilities for intervention that are best left untouched. Perhaps adequate safeguards and regulations could prevent moral atrocities from occurring, but can researchers, professional societies, policymakers, patient/​subject advocates, and other community stakeholders all agree quickly enough about what those protections should be? And will all of these groups be able to foresee where this brave new world of genetic knowledge could take us?

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The Collection of Genetic Information and Lessons from Henrietta Lacks It is a more common part of the experience of patients, research participants, and consumers to provide genetic information for various clinical and research purposes. While genetic samples are frequently given intentionally and with consent, people often do not understand all the uses that could result from giving their samples. The famous case of Henrietta Lacks is informative.

CASE 20 THE CASE OF HENRIETTA LACKS Henrietta Lacks was a black tobacco farmer who traveled to Johns Hopkins Hospital in 1951 because of continual vaginal bleeding. Johns Hopkins was one of the only hospitals in the country that would serve poor black patients. Her physician found a mass, did a biopsy, and discovered that Mrs. Lacks had cervical cancer. At the time, in the same building, researcher George Gey was collecting samples from all cervical cancer patients to test the tumors, although he did this without patients’ knowledge. There were no laws or regulations for collecting and distributing genetic samples in this kind of situation. All of the samples Dr. Gey collected from other patients expired within days, rendering them useless for further research. The exception was Mrs. Lacks’s cells, which actually duplicated every 20 to 24 hours. While Dr.  Gey was making his monumental discovery, Mrs. Lacks was undergoing standard treatment for her cancer, which took her life later that year. Mrs. Lacks was 31 years old at the time of her death, and it would be another 20 years before her family learned that her cell line was a sought-​ after and lucrative commodity among researchers. A rare genetic mutation made it possible for her cells to continue replicating. The HeLa cells—​named after Henrietta Lacks—​have been instrumental in studying cancer, AIDS, leukemia, radiation, and zero gravity’s effects on cells, and they were used in the development of the polio vaccine. Johns Hopkins never claimed ownership or profited from the HeLa line, but researchers have profited with thousands of patents and millions of dollars from using the cells. In 2013, researchers in Germany completed genomic sequencing on the HeLa line without the family’s consent, giving these researchers more complete genetic information about Mrs. Lacks than ever before. For decades, Mrs. Lacks’s descendants were not even consulted about the use of the cells or their genetic information, nor did they profit. Many of her family members struggled through significant financial hardship without health

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insurance, and her son was even homeless. After journalist Rebecca Skloot published The Immortal Life of Henrietta Lacks in 2010, there was tremendous public attention to questions of privacy, consent, justice, the ethical limits of research, and possibly racial components to the treatment of Mrs. Lacks and her family over the years.

Numerous research protocols include the request for collecting genetic materials for biobanks, which are storage places for biological specimens intended for future research. There are hundreds of millions of genetic samples in biobanks throughout the world. Research participants will not be able to access, remove, or learn about their genetic sample once they have contributed to a biobank because of how the materials are deidentified (that is, the samples are not linked to the donating individual with identifying information). This means that participants can have no knowledge of how or when their samples contributed to any scientific endeavors and cannot learn if, at some point in the future, medical information is learned from the sample that could be clinically useful to the donor or the donor’s relatives. When the United States started revising federal regulations of human subjects research (called the Common Rule) in 2018, the Henrietta Lacks case motivated some proposed changes. A  point of contention was whether any research with human tissue should count as research with human subjects, which would require more extensive oversight and consent procedures than previously needed. While some argue that additional protections are necessary to protect research participants’ autonomy and privacy, others contend that research would face tragic setbacks if scientists have to go through a rigorous application and review process whenever they wanted to study biological samples. After debates and public comments, the new Common Rule did expand its definition of “human subjects research” to include biospecimens, allowing broad consent for the collection and maintenance of specimens. With broad consent, researchers ask for permission for an unspecified range of uses with only a few restrictions. Although broad consent is meant to give research participants more control over their biospecimens and establish greater transparency, there remain concerns that a broad consent process will fail to give research participants the information they need to make an informed choice. For example, a donor could object to certain uses of the specimen, but have no means of placing a limit on the consent. Also, a donor might actually prefer that the sample remain identifiable so that he or she could be notified if potentially useful information is developed; for instance, if a gene for a disease is discovered for which the disease could be prevented if the donor was warned. The details of biobanks and genetic information remain elusive for many in the general public, so signing a consent, release, or disclosure form might not indicate the person’s understanding or values. The new regulations also require that researchers routinely check whether

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biospecimens that were deidentified have become identifiable due to increased knowledge of their distinctive features. (For more on the social ethics of research, see Chapter 12.)

Precision Medicine Medical science continually tries to move beyond the model of the “average” patient and understand how patients’ distinctive traits affect disease progression, health risks, and treatment effectiveness. For example, a patient might have a particular genetic variant making them possess an atypical risk for a disease like breast cancer or respond atypically to a drug. Scientists, geneticists, clinicians, biotech companies, and pharmaceutical companies across the globe are partnering to make precision medicine a reality. In 2016, President Obama announced the Precision Medicine Initiative, a multimillion-​dollar effort to investigate the interaction of people’s individual genetics, environment, and lifestyle on their health. Part of this effort includes the All of Us Research Program, which seeks to recruit at least a million volunteers who are representative of the diverse public. Volunteers could be asked to submit DNA samples, physical measurements, access to their electronic health records, and surveys about their lifestyle and medical history. Responding to public concerns, this Initiative claims to prioritize privacy and transparency with its research, even offering participants ongoing access to their data.7 This kind of medical research could radically change medical guidelines, as well as what patients should expect when they visit their physician; genetic testing might become more common in determining which treatment plan has the best chance of success. If the data reflect the diversity of the population, then medical recommendations can incorporate more details of the patient’s background and individual traits, which could potentially reduce some sources of bias and inadequate heuristics in patient care. Precision medicine has its skeptics, however. There are questions about how patients will be stratified or categorized based on these data and which data to weigh more heavily (Batten, 2018). Researchers will have to assess when their sample is sufficiently representative of the diversity of the population, which is no small task, given the great number of variations across genetics, environments, and lifestyles. Another concern is the use of medical records. Researchers have the challenge of pulling meaningful information about patients’ medical and social histories, which is especially complicated because documentation of social and behavioral data is not standardized, and is prone to bias and error (Hollister and Bonham, 2018). Another ethical question with these resource-​intensive initiatives is whether it is an appropriate use of funds, especially federal funds.The Precision Medicine initiative and others like it are predicated on a hope for medical benefits, but it is not clear at this point how much better medical guidelines will become or when these benefits could trickle to the diverse patient population. There are urgent medical needs now, so the allocation of scarce resources and federal attention will always be a sensitive and controversial issue.

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Genetic Discrimination Because of how it reveals predispositions for certain health conditions and other desirable or undesirable traits, plus its implications for other (past, current, and future) family members, genetic information is highly sensitive. As genetic information is increasingly collected and understood, it becomes more important to have regulations on the distribution and use of that information so as to prevent genetic discrimination. In the United States, the Genetic Information Nondiscrimination Act of 2008 (GINA) is meant to protect individuals regarding health insurance coverage and employment. Insurers may not use genetic information to determine eligibility, coverage, underwriting, or premiums. Employers and labor organizations are legally prohibited from requesting, requiring, or purchasing genetic information, which includes genetic tests and family medical information.8 The law would forbid, for example, firing or refusing to promote an employee because she has mental illness in her family. It would also disallow an employer’s requesting genetic testing as part of making decisions about benefits. Similar protections exist in a number of other countries as well, such as the Charter of Fundamental Rights of the European Union (2000) and Australia’s amendment to the Disability Discrimination Act (2008). Canada’s recently passed Genetic Non-​ Discrimination Act (2017) provides expansive protections in contractual and business agreements and in the provision of goods and services. In countries without these same legal protections, such as in Japan, people are vulnerable to disclosures without their consent and subsequent discrimination.9 Fears about genetic discrimination can also make people wary of participating in research where genetic samples will be collected, even when that research is important for scientific advancement. Laws like GINA have their limitations, however. There are inherent difficulties with following and enforcing this kind of law, especially given the rate at which genetic data are collected and thus discoverable. Researchers cannot absolutely promise that there is no risk associated with the collection of genetic data, given that security breaches and unintended disclosures are always a possibility. GINA also does not protect people in all potential sources of discrimination, including long-​term care insurance, life insurance, or disability insurance. It also does not protect in the housing market or with other provisions of goods and services. Although there are other laws and regulations that can offer some protections, the question remains: Can our regulations keep pace with the use of genetic data? If not, scientific advances will continue to carry significant ethical risks.

Genetic Testing and Counseling Genetic counseling arose with increasing genetic knowledge and recognition of the psychological and social impact of that information. The term genetic counseling was coined by Sheldon Reed in 1947. Reed was Director of the Dight Institute, which was founded in 1941 by physician Charles Fremont Dight, who supported eugenic programs and “bettering” the human race. Reed was not

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opposed to eugenic principles, at least early in his career, including both positive eugenics (promoting desirable genetic traits by encouraging procreation among genetically “superior” families) and negative eugenics (decreasing undesirable genetic traits by eliminating or excluding genetically “inferior” people from reproduction). Even though some early practitioners saw genetic counseling as an opportunity to impose paternalistic attitudes about the “best” family makeup, others viewed their role as more informative and supportive of reproductive decisions that families choose without nudging from the counselor. Over the next couple of decades, genetic counselors continued to debate if they should be governed by a consequentialist ethic that focuses on an optimized gene pool or instead if they should be governed by a rights-​based ethic that focuses on voluntary and informed choice. Reed became increasingly unimpressed with paternalistic attempts by genetic counselors to gear families in the “right” genetic direction for the population, and he ended up encouraging genetic counselors to take more of a hands-​off approach (Stern, 2012; Resta, 1997). Since then, genetic counseling has gradually emerged as a field that makes information available to individuals and couples potentially at risk of genetic disease or whose offspring might be affected, and the profession does not endorse eugenic principles. The National Society of Genetic Counselors, the largest association for the profession, was founded in the U.S. in 1979. They define genetic counseling as “the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions of disease” (National Society of Genetic Counselors, 2006). Specific scientific genetic tests have permitted more precise identification of genetic anomalies in fetuses as well as postnatal human beings, and a range of genetic tests is now possible, including the ability to sequence the entire genome of an individual (whole genome sequencing) or to focus on particular known variants (genotyping). The number of possible decisions that people can make about their genetic knowledge and reproduction have expanded enormously as a result. This has led to testing to identify potential carriers of genetic disease, those who may develop disease in the future but are currently presymptomatic, and those who have disease with active symptoms. In the process, serious ethical issues are raised (Stern, 2012; Clarke, 2007; Devettere, 2010; Human Genetics Commission, 2006; Monsen, 2009). In the case of autosomal recessive genetic diseases such as Tay–​ Sachs syndrome, sickle-​cell anemia, or cystic fibrosis, each parent must contribute a copy of the defective gene for the disease to manifest itself. This means that, even before choosing to be reproductive partners, people who have these diseases in their family can be tested to learn whether they carry a copy of the disease-​ causing gene. If both prospective parents have the gene, they can be counseled about remaining childless (through contraception, sterilization, or other strategies), adoption, donor gametes, preimplantation genetic diagnosis (which allows for the extraction of cells at an early stage from the embryos in order to test and select

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for particular genetic features), doing nothing, or, if the genetic status of the fetus can be tested in utero, whether to terminate the pregnancy. Genetic counseling can also be used for other conditions. Autosomal dominant conditions such as Huntington’s disease, retinoblastoma, and neurofibromatosis express themselves if only a single pathogenic variant is present.Thus, a single affected parent can transmit the pathogenic variant to an offspring. In the case of retinoblastoma, a tumor of the eye that will be fatal if untreated, surgical removal of at least one eye may prevent death, but will leave the patient with compromised vision or no sight at all. Huntington’s disease may manifest before the age of 20, but it often does not manifest itself until the affected person is in his or her thirties or later, but then leaves the person with progressive muscular paralysis that eventually leads to early death. Each child of an affected person has a 50  percent chance of having the defective gene. Because symptoms do not typically occur until adulthood, affected persons in the past often reproduced and passed the gene along to their offspring before they knew whether they were affected. Now it is possible to test persons at risk of Huntington’s disease so they can make choices about reproduction. However, in the process they will learn, perhaps years in advance, whether they themselves have the disease. Some claim that healthy people should not know in advance how they will die; others insist that those at risk should have this information, perhaps even when they are still children, so that they can plan a possible family, career, and other life choices in light of it. If a patient tests positive for Huntington’s but does not want to share this genetic information with relatives who have a 50 percent chance of inheriting the condition, genetic counselors and physicians find themselves in an ethical predicament. While the patient has a right to confidentiality, other family members might claim the healthcare professional also has a duty to warn others.

CASE 21 NON-​DISCLOSURE OF GENETIC RISK In 2007, a man was found guilty of killing his wife, although he was also found to have diminished responsibility. He showed increased cognitive disorder over time, so he was referred to a hospital. Physicians at St. George’s Healthcare NHS Trust in London discovered that the man had the genetic mutation for Huntington’s disease. They encouraged him to reveal this diagnosis to his daughters, but he refused, reportedly because he worried that his pregnant daughter might seek an abortion if she knew. The physicians accepted his decision. The pregnant daughter learned about her father’s diagnosis when a physician accidentally disclosed it after the child was born. She then received genetic testing and learned that she also has the mutation. It is currently unknown whether her child has the mutation, as her child is

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too young to have genetic testing. The daughter initiated a lawsuit against St. George’s Healthcare Trust, arguing that she would have had an abortion and the physicians had a duty to disclose her genetic risk. The case of Patient ABC v. St. George’s Healthcare Trust is set for late 2019, and the court will have to decide whether the realities of genetic testing should transform the patient–​ physician relationship, the duty of confidentiality, and the duty to warn.

We can also test for such chromosome conditions as trisomy 21 or Down syndrome, which leads to varying degrees of cognitive impairment and perhaps accompanying physical problems with the heart and digestive track, and trisomy 18, a rapidly debilitating and often fatal disease within the first year of life.These often result from abnormalities in the process by which chromosomes combine during fertilization, so while they are genetic, they are usually not inherited. In other cases, healthy unaffected parents may unknowingly carry a chromosomal change that increases their chance to have a child with a chromosomal abnormality (as in some cases of Down syndrome). Parents suspected to carry such a change (e.g., a balanced Robertsonian translocation) can be tested and the chromosomal change identified. Even if the parent does not carry a chromosomal change, screening for common fetal chromosomal abnormalities is routinely available, making possible choices about either abortion of affected fetuses or preparation for delivery if the fetus is carried to term.

Dilemmas for Counselors Genetic counselors and others who discuss options with prospective parents professionally, such as clergy and physicians, also face moral choices in the context of genetic counseling. A basic question for them is how they should interact with their clients. Many now take the position that they should be “nondirective”; that is, they should not attempt to transmit their own moral views to their clients. Instead, they maintain, they should provide them with scientific, social, and psychological information and leave the evaluative choices up to the client. These genetic counselors are aware of the issues raised in Chapter 6 about how difficult and subjective it is to determine what counts as a good outcome. They give priority to client autonomy, interpreted as maximizing patient control and free choice, encouraging clients to make their own value judgments. However, this value-​neutral position is increasingly being called into question. Contemporary philosophy of science now suggests that value neutrality is impossible, that counselor values will inevitably seep into the information they transmit, and that deciding which information is important enough to provide will necessarily require some value judgments on the counselor’s part. Moreover, some evaluations seem to pose such clear-​cut choices that many would consider it unethical to fail to voice an opinion about them. For example, parents can now

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decide to abort a fetus simply because it is not the preferred sex. They can also choose to carry a pregnancy to term in spite of the expectation that the child would experience nothing more than severe pain and imminent death. Many genetic counselors consider either of these sorts of choices so obviously wrong that it would call for more directive counseling.10 Deciding whether to be directive in these situations will depend not only on one’s views about abortion and autonomy, but also about how one feels about intervening into life’s most mysterious and important processes. This suggests a serious problem for the future of genetic counseling. If counselors believe that some choices are so obviously immoral that they cannot in good conscience refrain from conveying their disapproval, how can prospective parents and others being counseled protect themselves from undue and distorting influences from their counselors? The moral beliefs of genetic counselors should not determine decisions made by counselees who are regarded as autonomous and self-​determining moral agents, and yet these people cannot make their decisions without the assistance of such counseling. Genetic counselors grapple with this tension in their training and practice (see Berliner, 2015; Davis, 2001; Stern, 2012). One approach would be to strive to have counselors try to be as fair and unbiased as possible while still realizing that their communications will inevitably contain value perspectives. Genetic counselors could make a concerted effort to keep their value judgments to themselves, but any aspect of giving information, interpreting results, and answering questions could reveal their personal values. If those being counseled understood that all counseling conveys value judgments, and if counselors openly expressed their points of view, clients could ideally pick their counselors and the institutions in which the counselors work on the basis of compatibility of values as well as availability of factual information. For important decisions they might seek out other counselors for second opinions, intentionally pursuing counselors whose values are quite different. For example, a traditional Catholic might first get counseling from someone from within that religion’s tradition and then seek out a counselor whose values and beliefs are different. Even if these counselors try to present “just the facts” and present them as fairly as possible, in at least some cases, the messages are bound to be quite different.

Direct-​to-​Consumer Genetic Testing The twenty-​first century has witnessed the advent of relatively affordable genetic testing kits, delivered directly to consumers’ doors.Whole genome sequencing can be requested from private companies, although a cheaper alternative is to pay for genotyping services that reveal genetic markers for certain diseases and other traits such as bald-​headedness. 23andMe, one of the most successful companies in this business, offers testing for ancestry (including a relative finder tool), limited information regarding genetic health risks (e.g., three targeted mutations in BRCA1/​ 2 common to those of Ashkenazi Jewish ancestry and the APOE e-​4 gene variant

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for Alzheimer’s), wellness (e.g., lactose intolerance and the ability to fall into a deep sleep), carrier status for select conditions that could be passed to children (e.g., cystic fibrosis and sickle cell anemia), and other traits (e.g., sensitivity to bitter taste and fear of heights). Consumers swab their cheek or send saliva to the company that analyzes the data and sends a report. Consumers are encouraged to get their family members to sign up for testing as well, and many of these companies regularly request consent for additional research.11 There are many attractions to direct-​to-​consumer genetic testing. The service is available to anyone with the money and an address, including minors with consenting parents/​guardians.There is no “gatekeeper” to genetic information—​an interested person does not need a referral from a physician, for example (Hercher, 2015). The genetic information might seem more private, since it is not part of their medical record, which can also reduce the chances of unwanted disclosures and discrimination. These tests offer a way for people to learn more about themselves, plan for the future to some extent, and be proactive in their healthcare. It also provides a way for people to connect with others, such as through the ancestry service and relative locator. 23andMe facilitates the creation of Genetics Clubs for college students, so their customers can discuss their tests and learn more about genetic discoveries together. Genetic tests can also be a form of self-​expression, as seen in the advertised art prints based on a person’s unique genetic traits. Direct-​to-​consumer genetic tests have also raised significant concerns. Sensitive genetic information is being communicated through a company’s report instead of through a trained healthcare professional, which means that customers will not have the benefit of expert conversations, educational support, or psychosocial assistance at the time they learn their results. 23andMe has a number of accessible educational videos and information available online for free, but these cannot replace the one-​on-​one attention that a genetic counselor can provide. Genetics is a complex science, and detailed reports are generally ineffective in facilitating informed decision-​making. Consumers can easily overestimate and underestimate their genetic risks, which can lead to misguided health behavior changes. The results can also be misleading for people who are not experts in genetics; for example, the BRCA 1/​2 testing is limited to mutations common in the Ashkenazi Jewish population but not helpful to others, which could lead to a false sense of security (and possibly skipped mammograms or other preventive care). While some companies are careful about offering any advice based on the results, other companies are more directive in their recommendations. For example, several emerging companies promise to give customers detailed advice on meal planning, vitamins, dental care, athletic training, and stress management—​all based on genetic tests. These recommendations vary in their reliability and scientific validity, especially as they become more specific and detailed. The recommendations also necessarily require value judgments. For example, a recommendation about meal planning requires value judgments about how enjoyable certain foods are and how important it is to avoid undesirable consequences of eating the wrong

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foods. Nonetheless, these companies are offering a seductive service by increasing customers’ sense of control over their health. Moreover, the pervasiveness of genetic essentialism compounds these concerns, since consumers might be mistakenly expecting more complete answers about their identity, their behavior, and their future than these tests could possibly reveal. These companies can also sell people’s genetic information, which raises concerns about consumers’ privacy and control over their information. In 2018, 23andMe announced that the pharmaceutical company GlaxoSmithKline invested hundreds of millions of dollars in 23andMe, which allows GlaxoSmithKline to access customers’ genetic data as part of their pharmaceutical research.Any breaches of identifiable data expose not only the customer but potentially their family members as well. Although 23andMe asks for consent before adding a customer’s genetic results to their research database, this broad consent does not detail what the research could involve. Bioethicist Art Caplan has also made the point that the pharmaceutical research will be skewed toward the demographic that can take advantage of genetic testing services, which is likely not representative of the general population, which means that any pharmaceutical advancements might not be relevant to significant portions of the population. We have seen other ways in which direct-​to-​consumer genetic testing has unforeseen consequences. People can discover shocking secrets related to their family tree, which can change their sense of family and ethnic heritage. For example, people could learn that they are genetically unrelated to their parents or that they do not have the genetic ties to a particular culture that they thought they did. Genetic databases can be used for a variety of purposes that are not explicitly covered by a consent form, terms of agreement, or legal regulation. In 2018, law enforcement officials used an open-​source genetic database to find matches to a genetic sample from the Golden State Killer. The serial rapist and murderer had eluded law enforcement for decades because his DNA was not in any criminal database, but the open-​source genetic database found a match that led to a positive identification of a family member and subsequent arrest. This case led to public discussions about the expected and unexpected uses of genetic data and whether expanded access (e.g., to law enforcement) could be beneficial to the public good.

Genetic Screening Genetic screening carries the process of genetic counseling to a new and more systemic level (Baily and Murray, 2009; Tong, 2007). For many genetic conditions, one can test for the presence of a gene that predisposes the individual or that person’s offspring to genetic disease by using a blood test or some other simple, inexpensive procedure. This makes it feasible to screen whole groups of people. The earliest population screening was carried out on African Americans for the sickle-​cell disease gene and those in the Ashkenazi Jewish community

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for Tay–​Sachs genes. With screening, prospective parents could know prior to marriage or prior to conceiving children whether each carried a gene for the disease. If they did, in the simplest recessive conditions, then one in four of their children would have the disease and two in four would carry a single copy of the gene, meaning that they would not have the disease but could pass a gene on to their children. Since population-​based screening is targeted at whole communities, it is difficult for counselors who propose screening to be value-​neutral. One would not advocate the expense and effort of a communitywide program unless one were committed to the position that the disease in question was quite serious and worth preventing. Moreover, many of the earlier conditions for which screening was done involved ethnic minority communities and often led to the recommendation that couples limit child-​bearing or abort affected fetuses. These proposals smacked of a campaign designed to eliminate significant numbers of the future generation of the group involved. Later, screening became available for such diseases as cystic fibrosis and phenylketonuria (PKU), which affect nonminority Caucasians. However, suspicions about screening have continued and a concern about eugenics still lingers. Within the past few years, evidence has become available that specific genetic tests can identify people who are at risk of serious diseases such as breast cancer and certain forms of colon cancer. It is believed that specific genes, such as the BRCA1 gene for breast cancer, predispose individuals for disease that in some cases can only be treated by radical procedures such as bilateral preventative mastectomy. This is an example of how increased technology leads to more opportunities for decision-​making, which can lead to decisional burden. Increased awareness of genetic risks means that patients, genetic counselors, and other healthcare professionals will have to now consider a range of options that were unforeseeable prior to the advent of genetic screening and testing. Genes for other conditions, such as familial polyposis colon cancer, can be detected in children before the disease manifests itself in adulthood. Regular monitoring can be undertaken for those with the predisposing gene to identify early appearance of the disease.

Genetic Engineering Whereas genetic counseling is devoted to helping clients understand genetic conditions that impact them and their family members and genetic screening aims to identify those who are at risk for a genetic condition in the absence of a positive family history, genetic engineering is more direct and aggressive. It strives to overcome the effects of the bad genes by inserting the proper genetic information and eventually removing those genes causing problems. To date, planned clinical uses (still in research stages) have included attempts to treat a type of retinal dystrophy, a genetic form of pancreas disease, severe combined immunodeficiency, and various cancers including acute lymphoblastic leukemia and large B-​cell lymphoma.12

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Therapy versus Enhancement The ultimate goal is to learn to identify and remove harmful genes as well as to add missing ones. A distinction can be made that some consider morally significant between gene therapy and gene enhancement. The first attempts at gene therapy in humans, such as the case that follows, attempted to insert missing genes. They were thus “therapeutic” rather than enhancement attempts.

CASE 22 EXPERIMENTING WITH GENE THERAPY: THE CASE OF JESSE GELSINGER Eighteen-​year-​old Jesse Gelsinger suffered from ornithine transcarbamylase (OTC) deficiency, a rare genetic disorder that blocks the body’s ability to break down ammonia.13 His disease had been controlled by drugs and by maintaining a strict and unpleasant non-​protein diet all his life. In the fall of 1999, Jesse agreed to participate in an experiment at the University of Pennsylvania’s Institute for Human Gene Therapy. Like any more-​ traditional research, this experiment had to meet the usual requirements of adequately informed consent and review by an institutional review board to ensure that there were no undue risks. (Later review questioned whether this review was adequate.14) This experiment was different, however, in that it would attempt to change the genetic makeup of the patient. Researchers would administer a modified cold virus (called an adenovirus), hoping that the virus would carry the genetic material Jesse was missing and cure his OTC by permitting him to produce the enzyme he needed to metabolize ammonia. Seventeen previous subjects had participated in the University of Pennsylvania experiment without serious problems and a few had even shown improvement. Jesse Gelsinger, however, was the first patient to receive the virus with the genetic material directly into the liver’s blood supply. Moreover, Jesse’s liver functioned at a particularly low level. After receiving the injection of the virus, Jesse’s liver began to fail rapidly. Over the next three days, other organs began to fail and he suffered massive brain damage. He died four days later.

In contrast to therapy, enhancement involves an attempt to improve on a normal healthy body. Some people would like to be able to add to the normal lifespan or improve on what are considered normal human characteristics. Perhaps they would like to have a more pleasant personality or less of a desire to eat.These are likely to turn out to be polygenic characteristics that do not lend themselves to gene modification. It is possible, however, that some of these could be controlled by a single gene responsible for a simple enzyme.We have recently seen that drugs

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changing the metabolism of a single body chemical such as serotonin can have major effects on personality and weight. This distinction between therapy and enhancement rests on some hypothetical point that can be called “normal health.” Bringing people up to that point could be considered therapy while taking them beyond that point might be considered enhancement. An important question is what should count as “normal,” given how diverse humans are in their traits and pursuits. A concern is that judgments of normality too often reflect ableist biases—​that is, assumptions that life with any physical, intellectual, or psychiatric disability is necessarily a “lesser than” existence. Any proposal to use genetic modification to rid the world of disease and disability can prove controversial, depending on which conditions are being singled out for elimination. Providing “therapy” can be relatively noncontroversial when applied to disorders that are clearly devastating, but enhancement is frequently considered much more contentious (Mehlman, 2003; Savulescu and Bostrom, 2009; Zylinska, 2010). Moreover, the dividing point between them is very hard to define. For example, would someone who comes from a long line of very short people who is himself short be considered normal (compared to his ancestors) or abnormally short (compared to the rest of the population)? Would a female who is short be considered as “abnormal” as a male of similar height? Would parents who wanted their daughter to grow to be as tall as her brother (who happens to be tall enough to have a lucrative basketball career) be considered pursuing therapy or enhancement? The simple cases of therapy for serious genetic diseases generate the most sympathy. Even those reluctant to tamper with genes cannot help feeling sympathy for Jesse Gelsinger and others like him who are missing genes necessary for normal bodily functions.

Somatic versus Reproductive Cell Changes A second moral distinction in the genetic engineering debate is also considered important. To date, attempts to add genes to people with genetic diseases have involved inserting new genetic material into somatic cells.This somatic cell gene therapy means that the effort, if successful, will affect only the individual treated, not that person’s offspring. The reproductive cells of that person will still contain the genetic defect. That person’s offspring will be similarly affected. In the case of some autosomal recessive conditions, in which a second gene is needed from the mate before the disease can occur, leaving the reproductive cells unchanged may not pose an immediate problem. However, for dominant conditions it could. The more aggressively interventionistic camp advocates eliminating the problematic gene permanently so that it is not passed from one generation to the next. This is sometimes called germline or reproductive cell gene therapy because an attempt is made to fix the egg or sperm cells, not just the somatic cells (Cole-​Turner,  2008).

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Such reproductive cell gene therapy is potentially riskier than somatic cell therapy. If inserting a new gene or replacing a defective one is done somatically and the effect is unexpectedly deleterious, the problem has been created for only one generation. In the case of reproductive cell therapy, by contrast, the problem would be perpetuated in future generations unless some additional gene therapy were invented to reverse the changes. Reproductive cell genetic changes have already been carried out in animal studies. For example, a strain of “shiverer” mice has been bred so the animals’ nervous system lacks myelin, a basic protein. Shiverer mice are missing a gene responsible for production of this protein. Researchers have microinjected the necessary gene into zygotes of shiverer mice. In at least one case, the gene was successfully incorporated into offspring that went on to transmit the gene to successive generations (Walters and Palmer, 1997, pp. 60–​61). Researchers, ethicists, and social commentators are now beginning to take seriously the possibility of attempting similar germline genetic changes in humans, but moral and legal limits constrain the intentional effort to modify human germline modification.15 These technological efforts will require enormous resources and a gamble—​the gamble being that researchers will be able to create a safe and accessible technology that will not lead to terrible consequences for society. Many ethicists are concerned that this technology could revive eugenic principles, encouraging scientists, healthcare professionals, and would-​be parents to classify human traits based on their perceived worth. Some ethicists also worry about the creation of a genobility over time, a genetic division between those who have the socioeconomic privilege to genetically engineer their children and those who do not, deepening social divides. Scientists, ethicists, and clinicians across the globe have argued that there should be a moratorium on germline engineering in humans (although there is less opposition to experimenting with embryos if they are discarded after the research), at least until there are improvements in precision, safety, public education and participation, and regulatory guidelines with proper oversight (Organizing Committee for the International Summit on Human Gene Editing, 2015; National Academies of Sciences, Engineering, and Medicine, 2017; de Wert et al. 2018).

CRISPR In 2012, Jennifer Doudna and Emmanuelle Charpentier led genetic researchers to a profound innovation: A single system that can work like “genetic scissors” to target particular sections of DNA. The system is called CRISPR, an acronym based on how it works (Clustered Regularly Interspaced Short Palindromic Repeat). There are other germline editing techniques, but CRISPR is distinctively easy to use and straightforward. CRISPR could make it possible to genetically engineer crops that are heartier and resistant to disease, which could prove invaluable for global health. Scientists have already created mushrooms that brown

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less quickly and bananas that can resist a devastating fungus. In 2014, CRISPR-​ engineered macaque monkeys survived to birth. In 2017, reproductive biologists successfully used CRISPR in viable embryos (later discarded) to target a gene that contributes to hypertrophic cardiomyopathy, which can cause sudden death in athletes. Currently, there are still significant scientific hurdles for successful implementation of CRISPR. For one, there is a risk of off-​target effects; that is, the gene editing process can make any number of errors that lead to unintended mutations. Similarly, the editing could be incomplete without the researcher necessarily knowing it at the time, resulting in cells with mixed compositions (mosaicism). There are innumerable unknowns when it comes to the long-​term effects of germline engineering on persons as well, and the harms could be profound. As such, no informed consent process could, at this time, adequately cover the relevant risks or “what-​ifs” of the intervention.

CASE 23 A ROGUE SCIENTIST AND THE EMERGENCE OF CRISPR BABIES At the Second International Summit on Human Genome Editing in Hong Kong in November of 2018, Chinese scientist He Jiankui announced that he had successfully created the world’s first CRISPR-​edited babies, twins. He also claimed there was another pregnancy with a CRISPR-​edited fetus still in progress. He targeted a gene related to the transmission of HIV, and he recruited couples where the biological father was HIV-​positive. He’s apparent aim was to create HIV resistance, although the embryos were not positive for HIV, and the gene modification (if successful) would not grant total immunity. This means that the CRISPR intervention was not treating any disease but instead meant as a protective measure. Based on what He reported in an online video and at the Summit, scientists have raised concerns that He’s use of CRISPR was likely unsuccessful at achieving his aim. His genetic intervention could have deleterious effects on the babies down the road, which means these twins (and any other babies with edited germlines) will likely have to be monitored closely as research subjects throughout their lives. According to documents retrieved by news sources, He recruited couples by claiming his research was for an AIDS vaccine, and although his informed consent form did describe CRISPR, the language was highly technical and likely incomprehensible to the average participant. The informed consent form taken from his website also explicitly states that He and his team do not take responsibility for off-​ target effects. He conducted these studies while on unpaid leave, reportedly without the knowledge of his university. Additionally, He is accused of forging documents from an ethics committee in support of his research.

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The controversial case of the reported CRISPR babies led to worldwide condemnation, including from Jennifer Doudna and the Second International Summit on Human Genome Editing. Some genetic researchers expressed ambivalence with He’s alleged actions, suggesting that testing CRISPR on viable embryos is a necessary step in the progression of this technology. Some news outlets alluded to a “bioethics divide” between China and the West based on He’s actions, but a flood of criticisms came within He’s own country, where he lost his professional affiliations and faces legal consequences.16 If the initial reports prove to be accurate, then He violated international norms for this kind of research. Some of the possible moral failures include disrespecting the autonomy of research participants, not being adequately transparent and honest with the aims of the research, purposely evading ethical oversight, lying about ethical approval of the research, and showing a lack of concern for the welfare of the developing children and their families. Whether approaching this case from a consequentialist, deontological, virtue, or care perspective, He’s experiment will continue to draw ethical scrutiny for years to come.

Key Concepts Ableism A set of biases based on the assumption that life with any physical, intellectual, or psychiatric disability is necessarily a “lesser than” existence. Broad Consent In the context of research, permission for an unspecified range of tests, experiments, or uses of donated samples. Gene Enhancement Genetic engineering designed to improve on the normal genetic constitution of an individual. Gene Therapy Genetic engineering designed to correct a genetically caused medical problem. Genetic Counseling Profession committed to helping patients understand their genetics through education and psychosocial supports. Genetic Discrimination The withholding of services, goods, or other benefits on the basis of genetic traits. Genetic Engineering Genetic intervention that strives to overcome the effects of bad genes or to improve the genetic constitution of an individual by removing unacceptable genes or inserting more acceptable ones. Genetic Essentialism Ideology that reduces humans’ identities to their genetics and shifts responsibility away from social structures to the genetic nature of individuals. Genetic Screening The testing of groups at risk of genetic disease for the purposes of identifying those who possess certain genes that make individuals susceptible to genetic disease or carrier status.

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Genobility The hypothetical social and economic divide between those who are and are not genetically advantaged. Germline or Reproductive Cell Gene Therapy Gene therapy or enhancement targeted on the germ cells; that is, those cells that are involved in reproduction. The intention is that the effects will be transmitted to future generations. Human Genome Project An international genetic research initiative that has as its goal the identification of the position of all of the 50,000–​100,000 genes in the human body. The United States Congress formally committed to the support of this project in 1990, when it was expected to take 15 years to complete. Negative Eugenics Decreasing undesirable genetic traits, for example by eliminating or excluding genetically “inferior” people from reproduction. Nondirective An ethic common in genetic counseling according to which the professional should not reveal or impose any value judgments in their interactions with clients. Positive Eugenics Promoting desirable genetic traits; for example, by encouraging procreation among families with preferred genetic profiles. Precision Medicine An initiative to collect more detailed information about people’s genetics, environment, and lifestyle as they relate to health in order to give more tailored medical advice and create more effective medical interventions. Preimplantation Genetic Diagnosis Process of extracting cells at an early stage from the embryos in order to test for particular genetic features, permitting physicians and would-​be parents to select the most desirable ones for implantation. Somatic Cell Gene Therapy or Enhancement Gene therapy or enhancement targeted on the somatic cells; that is, those that are not involved in reproduction. The intention is that the effects will not be transmitted to future generations.

Bibliography Baily, Mary Ann, and Thomas H. Murray, eds. Ethics and Newborn Genetic Screening: New Technologies, New Challenges. Baltimore, MD: Johns Hopkins University Press, 2009. Batten, Jason N. “How Stratification Unites Ethical Issues in Precision Health.” AMA Journal of Ethics 20, No. 9 (2018): 798–​803. Berliner, Janice L., ed. Ethical Dilemmas in Genetics and Genetic Counseling: Principles through Case Scenarios. New York: Oxford University Press, 2015. Bosley, Katrine S., et  al. “CRISPR Germline Engineering—​the Community Speaks.” Nature Biotechnology 33, No. 5 (2015): 478–​486. Brokowski, Carolyn. “Do CRISPR Germline Ethics Statements Cut It?” The CRISPR Journal 1, No. 2 (2018): 115–​125.

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Brown, Kristen V. “The Next Pseudoscience Health Craze Is All About Genetics.” Gizmodo (2017), https://​gizmodo.com/​the-​next-​pseudoscience-​health-​craze-​is-​all-​about-​geneti-​ 1792194708, accessed August 18, 2019. Charo, R. Alta, and Henry T. Greely. “CRISPR Critters and CRISPR Cracks.” American Journal of Bioethics 15, No. 12 (2015): 11–​17. Clarke, Angus. “Genetic Counseling.” In Principles of Health Care Ethics, ed. Richard E. Ashcroft, Angus Dawson, Heather Draper, and John R. McMillan. Chichester: Wiley, 2007, pp. 427–​434. Coady, C.A.J. “Playing God.” In Human Enhancement, ed. Julian Savulescu and Nick Bostrom. Oxford and New York: Oxford University Press, 2009, pp. 155–​180. Cole-​Turner, Ronald, ed. Design and Destiny:  Jewish and Christian Perspectives on Human Germline Modification. Cambridge, MA: MIT Press, 2008, pp. 119–​143. Cyranoski, David, and Heidi Ledford.“Genome-​Edited Baby Claim Provokes International Outcry.” Nature, November 26, 2018. www.nature.com/​articles/​d41586-​018-​07545-​0, accessed August 18, 2019. Davis, Dena S. Genetic Dilemmas:  Reproductive Technologies, Parental Choices and Children’s Futures. New York: Routledge, 2001. Devettere, Raymond J. “Medical Genetics.” In Practical Decision Making in Health Care Ethics: Cases and Concepts, 3rd ed. Washington, DC: Georgetown University Press, 2010, pp. 420–​457. de Wert, Guido, et al. “Human Germline Gene Editing: Recommendations of ESHG and ESHRE.” European Journal of Human Genetics 26 (2018): 445–​449. Ducharme, Jamie. “A Major Drug Company Now Has Access to 23andMe’s Genetic Data. Should You Be Concerned?” Time, July 26, 2018. http://​time.com/​5349896/​23andme-​ glaxo-​smith-​kline/​, accessed August 18, 2019. ESHRE Task Force on Ethics and Law. “ESHRE Task Force on Ethics and Law 11: Posthumous Assisted Reproduction,” Human Reproduction 21, No. 12 (2006): 3050–​3053. Ethics Committee of the American Society for Reproductive Medicine. “Fertility Preservation and Reproduction in Patients Facing Gonadotoxic Therapies:  A Committee Opinion.” Fertility and Sterility 100, No. 5 (2013): 1224–​1231. Ethics in Precision Health. Special issue of AMA Journal of Ethics 20, No. 9 (2018): E793–​ E 910. https://​journalofethics.ama-​assn.org/​issue/​ethics-​precision-​health, accessed August 18, 2019. Evans, John Hyde. Playing God? Human Genetic Engineering and the Rationalization of Public Bioethical Debate. Chicago, IL: University of Chicago Press, 2002. Fletcher, Joseph. The Ethics of Genetic Control:  Ending Reproductive Roulette. Garden City, NY: Anchor Books, 1974. Gilbar, Roy, and Charles Foster. “It’s Arrived! Relational Autonomy Comes to Court: ABC v. St George’s Healthcare NHS Trust [2017] EWCA 336.” Medical Law Review 26, No. 1 (2017): 125–​133. Glover, Jonathan. Choosing Children:  The Ethical Dilemmas of Genetic Intervention. New York: Oxford University Press, 2006. Goodfield, June. Playing God: Genetic Engineering and the Manipulation of Life. London: Sphere Books, 1977. Grady, Christine, et al. “Broad Consent for Research with Biological Samples: Workshop Conclusions.” American Journal of Bioethics 15, No. 9 (2015): 34–​42. Green, Ronald M. Babies by Design: The Ethics of Genetic Choice. New Haven, CT: Yale University Press, 2008.

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Guidry-​ Grimes, Laura K. “The Case of Ms. D:  A Family’s Request for Posthumous Procurement of Ovaries.” Journal of Clinical Ethics 27, No. 1 (2016): 51–​58. Hercher, Laura. “Is That a Threat or a Promise? Direct-​to-​Consumer Marketing of Genetic Testing.” In Ethical Dilemmas in Genetics and Genetic Counseling: Principles through Case Scenarios, ed. Janice L. Berliner. New York: Oxford University Press, 2015, pp. 135–​158. Hollister, Brittany, and Vence L. Bonham. “Should Electronic Health Record-​Derived Social and Behavioral Data Be Used in Precision Medicine Research?” AMA Journal of Ethics 20, No. 9 (2018): 873–​880. Human Genetics Commission. Making Babies: Reproductive Decisions and Genetic Technologies. London: Human Genetics Commission, 2006. Japan Times. “Japan to Discuss Steps to Prevent Genetic Discrimination.” The Japan Times, June 16, 2017. www.japantimes.co.jp/​news/​2017/​06/​16/​national/​japan-​discuss-​steps-​ prevent-​genetic-​discrimination/​#.XOD4zI5Kg2x, accessed August 18, 2019. Joly, Yann, Ida Ngueng Feze, and Jacques Simard. “Genetic Discrimination and Life Insurance: A Systematic Review of the Evidence.” BMC Medicine 11 (2013): 25–​40. Kass, Leon R. “Forbidding Science: Some Beginning Reflections.” Science and Engineering Ethics 15, No. 3 (2009): 271–​282. Kessler, Seymour. “Psychological Aspects of Genetic Counseling. XI. Nondirectiveness Revisited.” American Journal of Medical Genetics 72 (1997): 164–​171. Larue, Gerald A. Playing God: Fifty Religions’Views onYour Right to Die.Wakefield, RI: Moyer Bell, 1996. Lombardo, Paul A.“Three Generations, No Imbeciles: New Light on Buck v. Bell.” New York University Law Review 60 (1985): 30–​62. Mehlman, Maxwell J. Wondergenes: Genetic Enhancement and the Future of Society. Bloomington, IN: Indiana University Press, 2003. Monsen, Rita Black, ed. Genetics and Ethics in Health Care:  New Questions in the Age of Genomic Health. Silver Spring, MD: American Nurses Association, 2009. Murashige, Naoko, Tetsuya Tanimoto, and Eiji Kusumi. “Fear of Genetic Discrimination in Japan.” The Lancet 380, No. 9843 (2012). www.thelancet.com/​journals/​lancet/​article/​ PIIS0140-​6736(12)61407-​X/​fulltext, accessed August 18, 2019. Murray, Thomas H., Mark A. Rothstein, and Robert F. Murray, Jr. The Human Genome Project and the Future of Health Care. Bloomington, IN: Indiana University Press, 1996. National Academies of Sciences, Engineering, and Medicine. Human Genome Editing: Science, Ethics, and Governance. Washington, DC: National Academies Press, 2017. National Society of Genetic Counselors’ Definition Task Force. “A New Definition of Genetic Counseling:  National Society of Genetic Counselors’ Task Force Report.” Journal of Genetic Counseling 15, No. 2 (2006): 77–​83. Nelkin, Dorothy, and M. Susan Lindee. The DNA Mystique: The Gene as a Cultural Icon. Ann Arbor, MI: University of Michigan Press, 2004. Organizing Committee for the International Summit on Human Gene Editing. “On Human Gene Editing:  International Summit Statement.” The National Academies of Sciences, Engineering, and Medicine, December 3, 2015. www8.nationalacademies.org/​ onpinews/​newsitem.aspx?RecordID=12032015a, accessed August 18, 2019. Parens, Erik, and Eric Juengst. “Inadvertently Crossing the Germ Line.” Science 292, No. 5516 (2001): 397. Peters, T., ed. Playing God? Genetic Determinism and Human Freedom. New  York and London: Routledge, 1997.

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Popejoy, Alice B., and Stephanie M. Fullerton. “Genomics Is Failing on Diversity.” Nature 538 (2016): 161–​164. www.nature.com/​news/​genomics-​is-​failing-​on-​diversity-​ 1.20759, accessed August 18, 2019. Ramsey, Paul. Fabricated Man. New Haven: Yale University Press, 1970. Rester, Robert G. “The Historical Perspective:  Sheldon Reed and 50 Years of Genetic Counseling.” Journal of Genetic Counseling 6, No. 4 (1997): 375–​377. Sandel, Michael J. The Case against Perfection:  Ethics in the Age of Genetic Engineering. Cambridge, MA: Belknap Press of Harvard University Press, 2007. Savulescu, Julian, and Nick Bostrom, eds. Human Enhancement. Oxford and New York: Oxford University Press, 2009. Scully, Thomas J., and Celia Scully. Playing God:  The New World of Medical Choices. New York: Simon & Schuster, 1987. Shelley, Mary Wollstonecraft. Frankenstein or the Modern Prometheus. New  York:  Collier Books, 1961 [1817]. Silvers, Anita. “Predicting Genetic Disability while Commodifying Health.” In Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability, ed. David Wasserman, Jerome Bickenbach, and Robert Wachbroit. New  York:  Cambridge University Press, 2005, pp. 43–​66. Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Random House, 2010. Sproul, R.C., ed. Playing God: Dissecting Biomedical Ethics and Manipulating the Body. Grand Rapids, MI: Baker Books, 1997. Stern, Alexandra Minna. Telling Genes: The Story of Genetic Counseling in America. Baltimore, MD: Johns Hopkins University Press, 2012. Stolberg, S.G. “The Biotech Death of Jesse Gelsinger.” New York Times Magazine, November 28, 1999, pp. 136–​140, 149–​150. Tong, Rosemarie. “Genetic Screening, Counseling, and Therapy.” In New Perspectives in Health Care Ethics:  an Interdisciplinary and Crosscultural Approach. Upper Saddle River, NJ: Pearson/​Prentice-Hall, 2007, pp. 177–​215. van den Belt, Henk. “Playing God in Frankenstein’s Footsteps: Synthetic Biology and the Meaning of Life.” Nanoethics 3, No. 3 (2009): 257–​268. Walter, James J. “Human Germline Therapy:  Proper Human Responsibility or Playing God?” In Design and Destiny:  Jewish and Christian Perspectives on Human Germline Modification, ed. Ronald Cole-​Turner. Cambridge, MA: MIT Press, 2008, pp. 119–​143. Walters, LeRoy, and Julie Gage Palmer. The Ethics of Human Gene Therapy. New York: Oxford University Press, 1997. Weiss, Rick, and Deborah Nelson. “Teen Dies Undergoing Experimental Gene Therapy.” The Washington Post, September 21, 1999, pp. A1, A21. Weiss, Rick, and Deborah Nelson. “FDA Lists Violations by Gene Therapy Director at U-​ Penn.” The Washington Post, March 4, 2000, p. A4. Yong, Ed. “The CRISPR Baby Scandal Gets Worse by the Day.” The Atlantic, December 3, 2018. www.theatlantic.com/​science/​archive/​2018/​12/​15-​worrying-​things-​about-​ crispr-​babies-​scandal/​577234/​, accessed August 18, 2019. Zhang, Sarah. “The Loopholes in the Law Prohibiting Genetic Discrimination.” The Atlantic, March 13, 2017. www.theatlantic.com/​health/​archive/​2017/​03/​genetic-​ discrimination-​law-​g ina/​519216, accessed August 18, 2019. Zylinska, Joanna. “Playing God, Playing Adam: The Politics and Ethics of Enhancement.” Journal of Bioethical Inquiry 7, No. 2 (2010): 149–​161.

11 REPRODUCTIVE CHOICE AND ADVANCING TECHNOLOGIES Ethical Challenges in the Creation of Humans

LEARNING OBJECTIVES FOR THIS CHAPTER (1) Identify some of the central ethical challenges that accompany advances in reproductive technology. (2) Apply the notion of procreative autonomy in considering different reproductive possibilities and the associated obligations of healthcare professionals. (3) Recognize how new reproductive possibilities can impact people differently depending on their socioeconomic position, such as with surrogacy contracts.

Especially as genetic knowledge grows, our control over reproductive possibilities continually expands. Humans have a long history of selective breeding in livestock and domestic animals, and preferences for certain genetic traits in humans affect our own interactions and reproductive choices. People who wish to pass on their genetic heritage might choose reproductive mates with a similar heritage. If someone is worried about passing on her risk for genetic disease, she could choose to contact an agency for donor gametes that are tested before implantation. A single woman does not need a male reproductive partner to start a biologically related family. Non-​heterosexual couples have options for biological children. Women can be contracted to carry a pregnancy for someone else. A  grieving widow can request to have sperm extracted and stored from her deceased spouse for future reproductive use. With all of these choices come great responsibility—​ for would-​be parents, for healthcare professionals, and for researchers.

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The last chapter discussed key debates in bioethics that revolve around genetic knowledge, genetic counseling, and genetic intervention. This chapter builds on that discussion, as many reproductive technologies rely on what is possible with genetic information. Once genetics meets reproductive technology, the ideas are far from abstract; the implications for healthcare professionals, patients, their current and would-​be families, and society are immense. This chapter describes ethical challenges with reproductive options that have existed for some years now, such as standard uses of in vitro fertilization, but it also looks at newer possibilities, like posthumous reproduction. Different approaches to bioethics can illuminate how and why humans should be created. The bioethics literature explores these issues from many angles, whether turning to principle-​based approaches, care ethics, casuistry, or feminist ethics, for example. This chapter surveys the evolving bioethics discussions of reproductive technologies, which touch on a number of ethical issues that have been addressed in this book, including moral standing, respect for persons, and professional obligations. Key questions in bioethics include: Ethically, are there better or worse ways to create a family? What role should healthcare professionals have in facilitating or halting the creation of human beings? What moral responsibilities do would-​be parents have to their would-​be children? How do the answers to these questions shape the social and cultural context of reproductive choice?

Procreative Autonomy: Possibilities and Limits The ability to choose and control reproduction is central to a number of interlocking moral interests, including bodily sovereignty, sexual agency, building a family, connection with a community, and faithfulness to a cultural or religious tradition. Parenthood can shape other goals and aims that people have for their lives, and it can become core to their sense of self. Many have argued that there is a right to procreative autonomy, which broadly refers to the ability to reflect on and choose for oneself whether and how to have biological children.To be meaningful, procreative choices would need, at minimum, to be free of undue coercion, such as threats of violence. The history of bioethics is full of debates about what the right to procreative autonomy might specifically entail. Eugenics programs in Nazi Germany, in the United States up to the 1960s, and elsewhere in the world have involved forced sterilizations of people with perceived genetic defects, including persons with physical and intellectual disabilities and racial minorities. Sterilization remains a controversial practice; for example, when hysterectomy (surgical removal of the uterus) is proposed for a child with profound intellectual disability who is not expected to be capable of consent but who could experience physical and mental distress associated with puberty. On the flip side, young adults, especially unmarried women without children, often struggle to find physicians who are willing to perform sterilizing procedures, even if the patient insists that

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she has no interest in reproduction. Healthcare professionals are often concerned about patients limiting their future procreative autonomy. Some have argued that the right to procreative autonomy includes a societal obligation to make reproductive options accessible, such as contraception, abortion, and assisted reproductive technologies (ART). ART involves the manipulation of eggs and embryos outside of the body, sometimes with donor eggs, donor sperm, or frozen and stored embryos.To make these options accessible, healthcare insurance arguably would have to cover the costs. The United States witnessed a national debate on this topic—​specifically whether companies should have to pay for employees’ access to contraception (one of the cheapest methods of exerting control over reproduction). The Affordable Care Act mandated coverage of contraception, but in Burwell v. Hobby Lobby, the Supreme Court decided that certain companies can decline to include birth control in their healthcare plans if doing so violates the owners’ religious beliefs. Another fraught debate is whether minors’ right to procreative autonomy (if it exists) should include basic education about sex, reproduction, and contraception in schools. Making abortion easily accessible to any patient could involve establishing limits on healthcare professionals’ ability to opt-​out of the procedure. Making ART widely accessible could necessitate setting market prices at an affordable rate, which could require immense market regulation and controversial priority-​setting in healthcare. In all of these discussions about controlling reproduction, there are concerns with the state, companies, and healthcare professionals becoming over-​involved in people’s reproductive decision-​making. One concern is that an over-​emphasis on reproduction can lead to pronatalism. Pronatalism is an ideology according to which reproduction should be encouraged as the best way to promote family values, genetic heritage, or other desirable features of a society. Pronatalist policies, such as those in Russia, incentivize having biological children. Pronatalist policies and attitudes tend to be oppressive and coercive by devaluing women as mere egg producers and incubators, exploiting poor women who need state-​ provided benefits more than others, and disadvantaging people with infertility or a preference against reproduction or health conditions that make reproduction dangerous for them. Many of the bioethics debates about genetics and reproduction are focused on the experiences and interests of those who are socioeconomically privileged, such as those who can access a wide variety of reproductive options and test their embryos or fetuses before birth. The reality is that many of these options are not feasible for people who want to start a family. Moreover, the focus on maximizing reproductive choices reflects a particularly American outlook; a number of other cultural traditions focus on having meaningful choices, not just more choices, and what is meaningful can be shaped by community considerations in ways that are hard to imagine from the standpoint of America’s rugged individualism. As technology advances to allow greater control over reproduction, there is always the worry that what counts as a desirable family, a child worth having, or a good

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parent will reflect biases of the socioeconomic elite.The burdens of these technologies are not equally shared across the socioeconomic spectrum. Immense resources in terms of laboratory space, researchers’ time, grant money, and dedicated clinics are being spent on options that will not be accessible or even desired by many people who would prefer access to basic reproductive options.

Abortion and Prenatal Testing Globally, the average rate of abortion was 35 per 1000 women from 2010 to 2014. Of all the abortions that occurred in this time frame, 88 percent were in developing countries. As of 2017, 42 percent of women of reproductive age live in countries where abortion is either prohibited entirely or only allowed to save the health of the mother. Restrictive laws have minimal to no effect on the rate of abortion, but the accessibility of contraception does have a significant impact. Poor and rural women have less access to safe abortion, so they experience the riskiest abortions and highest rates of complications. Approximately 6.9 million women in developing regions are treated annually for complications following abortions (Guttmacher Institute, 2018). In a study of why women in the U.S. request abortive procedures, the top reasons given were that having a child would interfere with education, work, or the ability to care for dependents; not being able financially to afford having a child at the time; and not wanting to be a single mother, or having relationship problems (Finer et al., 2005). By the end of the 1960s, the complexities of genetics were beginning to become clearer. Moreover, the focus on societal interests was gradually replaced with a more traditional medical perspective in which the motivation for intervention was the prevention of human suffering. This shift gave parents, for the first time, a scientific basis for making reproductive choices in light of their interests and those of their offspring. Legal abortion in the United States in the 1960s was limited to so-​called hard cases, those that threatened the life and health of the pregnant woman and those that involved rape, incest, and “fetal deformity.” Thus, we had not only more complete scientific information and a more rights-​oriented ethic, but also a law that would permit at least modest choices about whether to carry pregnancies through to delivery. Broadly speaking, there are three different kinds of debate surrounding abortion: (1) whether legal restrictions are ethically appropriate or even required, (2) how healthcare professionals should respond to requests for (legal or illegal) abortion, and (3) the personal responsibility of those who request the procedure. Someone could argue that the state should not be involved in these decisions and healthcare professionals should serve as the sole gatekeeper to this service. Someone could also argue that neither the state nor a physician should prevent a woman from accessing this service (in some or all cases), and the responsibility ultimately falls on her for deciding what is ethically appropriate in the circumstance. Nuanced positions are available within these debates, which are a source

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of significant political division in the United States and elsewhere. The ethical analysis of abortion has to come back to the moral standing of the fetus across its developmental stages and how to weigh the rights and interests of the gestating woman in light of that moral standing (see Chapter 3 for a discussion of moral standing). Would-​be parents will have to grapple with these questions more frequently as prenatal testing becomes increasingly common. Prenatal testing includes ultrasounds and blood tests to detect anomalies and risk factors. Genetic screening in the first and second trimesters is regularly performed. Depending on the risk determination, the physician might recommend amniocentesis (fluid surrounding the fetus is tested for chromosomal disorders and conditions like spina bifida) or chorionic villus sampling (a sample of placental tissue is extracted to test for genetic disorders), both of which are invasive but can provide a definitive diagnosis. Learning about any anomalies or disorders early in pregnancy allows parents the possibility to educate themselves about certain conditions, prepare for medical decisions while in utero or shortly after birth, or make financial arrangements for the child’s care needs. These tests can also inform decisions about maintaining or terminating the pregnancy. As genetic technology becomes more advanced, prenatal testing offers an unprecedented amount of information about what the life of a future child is expected to be like, at least from a medical point of view. The interpretation of this information and the framing of decisions are largely affected by the social and cultural context of the decision. In a society that persistently devalues life with disability, for example, would-​be parents can feel various pressures to prevent disability, including using prenatal testing to identify any anomalies.What seems like a moral good—​more choice—​can actually become a recipe for moral challenges, such as when increased choice leads to increased pressure to have “the best” children (Ho, 2008).These pressures can perpetuate troubling norms, intentionally or unintentionally, such as those rooted in ableism (the notion that life with disability precludes the possibility of a good life). Prenatal testing can reveal conditions that are known to cause imminent death or serious pain and suffering, but they can also reveal disorders where the prognosis is less certain or the quality of life is more variable. One controversial example is pregnancy termination following a prenatal diagnosis of Down syndrome. In the United States, about two-​thirds of women terminate the pregnancy after they learn of this diagnosis (Natoli et  al., 2012). The termination rates are higher in other areas of the world, such as in Denmark and Iceland where the rates are close to 100 percent.1 As a disability, Down syndrome does not necessarily lead to a poor quality of life; in fact, surveys show that the vast majority of people with Down syndrome report as happy and satisfied with who they are and how they look (Skotko et al., 2011). People with this condition can lead fulfilling and meaningful lives with an average life expectancy around 60  years. The high rates of termination might be based on prevalent misunderstanding of the lived experiences of this condition. If so, then a possible

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role for genetic counselors and other healthcare professionals is to provide these first-​person reports and survey data to expectant parents, so the decision about potential abortion is better informed. The high termination rates might also be due to concerns about other medical complications and financial difficulties; people who make this choice are not necessarily doing so out of ableist attitudes. Regions vary widely in what supportive services, financial assistance, and educational programs exist for children with Down syndrome and their families. In areas with scant resources, caring for a medically complex child is especially daunting, and some would-​be parents are more capable of handling those obstacles than others (due to no fault of their own). But as we see in countries like Iceland and Denmark, genetic information can have a profound effect on the genetic constitution of children in a society. If living with Down syndrome can be full of joy and meaning, then is it ethically problematic to effectively remove this form of existence through cumulative termination decisions? Part of the ethical challenge is that even if each individual decision to abort is autonomous, the end result can still raise concerns about discrimination and unfair devaluation of life with disability. The overarching culture and availability of resources might have a significant influence on what women decide in these situations.

In Vitro Fertilization On July 25, 1978, Louise Brown, the world’s first so-​called test-​tube baby, was born.2 Drs. Patrick Steptoe and Robert Edwards developed the technique of removing eggs from a woman’s ovary, fertilizing them with semen in a Petri dish, and then transferring any resulting embryo into the uterus.3 In vitro fertilization (IVF), as the procedure is called, was to be used exclusively for treating infertility in married couples. IVF is the most common and effective form of assisted reproductive technology (ART). In the early days of in vitro fertilization, one of the moral issues involved what amounts to controversy over doing research on human subjects without consent. It seemed that these babies who had been brought into existence in such a novel way were at risk of trauma. Healthcare professionals at the time could not be sure that they would not have terrible malformations. Critics argued that the procedure could not be said to be for the benefit of the babies, even if they would not otherwise have been alive. Now that millions of infants have been born using these techniques, this concern has lessened, but a more fundamental concern remains. Is there something about IVF that pushes human manipulation of the beginnings of life too far? The generation of human life has traditionally been thought to be a mystery, something largely out of human hands. Some believe that that is the way it ought to be. They consider it hubris to put control of fertilization into human hands, literally bringing it out into the open and placing the process under glass.

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While IVF was initially thought of as a key to one door—​g iving infertile couples an option for biological children—​it has become a key to many other doors. Would-​be parents have more options for choosing the genetic material of their future child, and they have more information at their disposal to decide what genetic bits are most important to them. In 2016, the world’s first three-​parent baby was created by combining the egg, sperm, and mitochondrial DNA of three individuals. Since then, several three-​parent babies have been born with this technique. The motivation behind the procedure is to try to prevent mitochondrial-​ based diseases like Leigh syndrome, a severe neurological disorder that can cause fatal breathing difficulties early in life. This technology lies at the border between medicine and research, and ethicists debate what could count as adequate consent in this situation where the physician-​researcher cannot know the long-​ term effects on the child. Moreover, any defects introduced in the process could be inherited by future children, which raises all of the concerns about human germline manipulation mentioned in the previous chapter.4 All of these new technologies of birth can be extremely expensive. In the United States, IVF typically costs $12,400 for the initial cycle and may require several additional cycles, and increased demand for IVF over the years has not drastically affected these costs.5 Thus, using these technologies raises the same issues of justice in resource allocation that arise in any other healthcare rationing controversy (see Chapter 12). And because of the level of control that IVF offers and its high price point, there are also concerns that these birth technologies risk the creation of a genobility over time, making it easier for wealthy parents to give their offspring genetic advantages when other families do not have this option.As mentioned with genetic engineering, these genetic advantages could be therapeutic or enhancement-​oriented.While some would argue that parents have an ethical obligation to give their children every possible advantage, others argue that a possible genetic caste system is too serious of a risk to take, especially if these genetic disparities end up shifting priority-​setting and funding in healthcare to the detriment of those in lower socioeconomic positions.

Preimplantation Genetic Diagnosis Now it is standard practice with IVF to fertilize several eggs. Preimplantation genetic diagnosis (PGD) is the process of extracting cells at an early stage from the embryos in order to test for particular genetic features, permitting physicians and would-​be parents to select the most desirable ones for implantation. This practice improves the likelihood of healthy birth for those at high risk of certain disorders and those with recent miscarriages or unsuccessful IVF cycles. To the extent that PGD minimizes unwanted genetic traits, it can also decrease the chances of abortion. After the desired embryos are chosen for implantation, excess embryos are discarded, frozen for later use, consigned to research, or donated to other infertile couples. These are all morally controversial in the eyes of some. These embryos are emerging as a major source of stem cells, providing for further

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controversy. The metaphors of manufacture, (re)production, and fabrication are used by critics to suggest manipulation and tampering in a process that has an almost sacred quality to it. PGD forces would-​be parents and clinicians to consider the possible interests of a future child, which is no simple task. Some argue that children have the right to an open future, a notion that was first proposed by philosopher Joel Feinberg in his defense of giving children the ability to choose their own religious and ethical worldviews (Feinberg, 1980). Applied to PGD, the right to an open future argument has convinced some ethicists that there is an obligation to maximize genetic advantages so that these children have the fewest hindrances possible in pursuit of whatever life they choose. Some parents do not select the embryos that the physician believes are most desirable; for example, some parents have requested PGD for the sake of choosing embryos that have genetic markers for deafness and dwarfism. These parents usually have the condition themselves and wish to have a child with similar features who can share their experiences and be part of their community. These cases have stirred controversy because some argue that these parents are violating the child’s right to an open future by limiting their abilities. One reply is that using PGD for this purpose is within the procreative autonomy rights of the parents, and clinicians should not “police” the reasons given for wanting to take advantage of this technology. Furthermore, not all disabilities are the same, and people without these disabilities lack the requisite knowledge and experience to claim what is “limiting.” They argue that deafness and dwarfism are not inherently pitiable or tragic states, and children with these conditions do not have a “closed” future in any sense. These tensions have called for increased attention to disability studies and first-​person narratives in bioethics, particularly given that medical norms tend to be overly narrow in their evaluation of health and well-​being (Kaposy, 2018; Reynolds, 2018; Shakespeare et al., 2009).

Surrogacy Once the technology of in vitro fertilization became possible, a fertilized egg could be implanted in a different woman from which it was taken. Would-​be parents can hire or otherwise enlist the assistance of a surrogate to gestate the embryo. This kind of surrogate is different from surrogate decision-​ makers, discussed in earlier chapters; all surrogates serve in the stead of someone else, but in reproduction, a surrogate is someone who carries a pregnancy for someone else. A  critical part of this arrangement is that the surrogate agrees to return the newborn to the soliciting person(s). The genetic material could come from a soliciting couple or from donors, so the child’s genetic parents might be different from her gestational mother or from the parent(s) who raise her. This method is generally used for medical reasons—​for a woman whose uterus would not support a pregnancy or for those who would be endangered by pregnancy.

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CASE 24 MARY BETH WHITEHEAD William and Betsy Stern wanted to have a child, but Mrs. Stern had chosen not to bear one herself because of a medical condition which she believed would have been dangerously aggravated by a pregnancy. In February 1985, Mr. Stern signed a surrogacy agreement with Mary Beth Whitehead in which Ms. Whitehead agreed for a $10,000 fee to be artificially inseminated with Mr. Stern’s sperm and to carry the offspring to term. She agreed that after delivering the baby she would turn the child over to the Sterns and that they would become the legal parents. A baby girl was born on March 27, 1986. Ms. Whitehead called her Sara; the Sterns called her Melissa; and eventually the courts called her Baby M. After the birth, Ms. Whitehead refused to relinquish parental rights. In her book, A Mother’s Story, Mary Beth Whitehead recalls one of many confrontations she had with the Sterns after the birth: “I looked at Betsy Stern and thought to myself, ‘Betsy, I’m not selling this child. I started this when I actually believed it wasn’t my child. Everyone convinced me that it was your child, but going through the pregnancy and the pain of labor, and then seeing the baby has made me realize that this is my baby, not yours.’ ”6 In the following months, Ms. Whitehead and her husband at the time, Rick, disputed the case with the Sterns. The infant was in the Sterns’ possession only for a short while after her birth before Ms. Whitehead took her and fled from her home in New Jersey to Florida, where she led a life on the run for several weeks. Eventually, the police seized the child, and she was returned to the Sterns. But the battle was far from over. Although the baby remained in the Sterns’ care, a lengthy legal custody battle occurred. On March 31, 1987, the New Jersey Superior Court ruled Baby M would remain in the sole custody of her father, William Stern. Mary Beth Whitehead’s parental rights were terminated. Mr. Stern had filed suit claiming his rights had been violated. He claimed he was being denied equal protection under the fourteenth amendment of the Constitution. He argued that since men who provide sperm for artificial insemination legally surrender their parental rights, women should be treated similarly. The debate centered on whether women are bound by contractual commitments signed prior to conceiving as surrogate mothers to surrender parental rights. The Supreme Court of the State of New Jersey, which eventually reviewed the lower court opinion, ultimately awarded custody to the Sterns, but denied the equal protection argument, thus apparently undermining binding

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surrogacy contracts. Mary Beth Whitehead’s parental rights were restored, and she was later allowed (in a separate court decision) unsupervised, uninterrupted “liberal” visitation privileges. In future cases, the possibility remains that a surrogate mother who changed her mind about a commitment to surrender parental rights could nevertheless gain custody.7

As the complexity of these relations increases, the moral issues also increase. For one, the question of compensation to motivate a surrogate’s assistance arises. Sperm donors have always been paid, raising the issue of why women who provide an egg cell or a womb for gestation should not also be compensated. Some argue that there are significant differences in the time, burden, and risk involved, but it is not clear whether that implies that payment would be more or less justified. Presently, markets to pay surrogates who provide a womb (or a womb plus an egg, as Mary Beth Whitehead did) are considered highly suspect and actually prohibited in some jurisdictions. Excluding compensation is believed to make the decision to participate, particularly by poor women, less coercive, but it also raises questions about fairness for women who accept a considerable burden for the benefit of others. A central issue in the controversy over surrogacy contracts is whether women who agree to serve as surrogates are bound morally or legally to follow through on their commitment to hand over the child to the people who originally were to become the postnatal parents.Those committed to the right of competent persons to form binding contracts consider policies permitting surrogates to cancel their commitment unfair. They ask, in the terms of Chapter 7, whether there is a duty of fidelity to promises. These defenders of surrogacy contracts hold that people should be screened to ensure that they are mentally competent and stable before they make such commitments, but that, once a commitment is made, they have a moral duty to keep it. To do otherwise is unfair to anyone who was promised that the child would be theirs to nurture, and who made emotional, social, and psychological commitments based on that promise. Critics are not satisfied with this defense. They point out that those who agree to become surrogates are often of lower socioeconomic and educational status. When there are few viable options for making a living, payment for surrogacy might not be something that a woman feels free to turn down. Additionally, some critics cast doubt on the moral legitimacy of these contracts because of how women’s bodies and babies have been commodified in the process. Pregnancy is not a mere business transaction; bearing a child is an enormous, emotional undertaking. Bonds are created between the pregnant woman and the fetus she is carrying, and the depth of this bonding might not be predictable at the time of signing a contract. Even for women who have been pregnant before, they might not have any experience with giving up a child they have cared for in pregnancy. Some argue that surrogates need a period of time after each pregnancy to reassess and determine whether they can continue to commit to relinquishing

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the child they have borne. One possible problem with this argument, however, is that it seems to suggest that women, in at least this one respect, are unique in that, even if they are adults deemed mentally capable, they cannot make autonomous, rational commitments that are free from nonrational, emotional factors beyond their control. Defenders of these contracts, on the other hand, could insist that surrogacy can be a meaningful form of work that women can enter into voluntarily and with full understanding of the risks. If surrogates are given a window to reconsider giving up the child, then it will be difficult to convince people to engage in these contracts at all. Transnational commercial surrogacy, where the soliciting couple or individual hires a surrogate in another country, has additional layers of ethical issues. This form of surrogacy is a multibillion-​dollar business with minimal to no oversight in some regions. Concerns with coercion and exploitation are especially pronounced in areas with extreme poverty. Couples from developed countries can pay significantly less for a surrogate in India or Thailand, for example. In these countries, the financial incentives can unduly pressure women to agree to this form of employment.The contracts might not be in their native language or appropriate for their level of literacy. There are alarming reports that many of these women might be trafficked or otherwise forced by their husbands or local “agencies” to participate. In India, a single surrogacy can make it possible for a woman to make ten times her husband’s salary (Hague Conference on Private International Law, 2011). These contractual arrangements can fail to respect the surrogate as a person in a number of ways. She might have limited autonomy or choice when it comes to her prenatal care or lifestyle while pregnant, depending on the terms of the contract or the requirements of the agency. She might not be granted full information about the health of the fetus in the course of prenatal testing, and she might not know the details of what kind of family or home the child would be going into. If the soliciting persons change their mind about having the baby, the surrogate might have to face requests for abortion—​and the risks and stigma of abortion might be particularly severe in her country if legally permitted at all. If multiple children are born and the soliciting couple does not want to take all of the children born, then that puts the surrogate in an immensely difficult position. If the surrogate has any obstetric complications after the birth, the contracting parties and the child might already be on a plane to another country; she might not be assured any financial or medical assistance. All of these factors and more make surrogates in transnational arrangements particularly vulnerable and susceptible to being taken unfair advantage of, and the larger socioeconomic reasons that can pressure women to agree to surrogacy are going unaddressed in the meantime.

Posthumous Reproduction In some cases of death, it is possible for physicians to extract sperm from the deceased.The sperm would then need to be cryopreserved (frozen and maintained

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in a storage facility) and later thawed and used in an IVF process for a chance at creating children. Currently, posthumous reproduction is only possible with male gametes, although it could become possible with ovarian tissue in the future. Ovarian tissue cryopreservation is already routinely used to preserve fertility for patients undergoing cancer treatments. Ethical questions are raised when a grieving spouse, unmarried partner, or parents of the deceased request that physicians take these steps (ESHRE Task Force on Ethics and Law, 2006; Ethics Committee of the American Society for Reproductive Medicine, 2018). An immediate ethical question is whether the deceased wanted to have their gametes used for this purpose. Even if the deceased person wanted a family while alive, that does not mean that he would have wanted to have his sperm taken from his dead body and used in IVF to a create a child who would never be able to meet his or her biological father. The ethical concern here is similar to when we try to respect the dead by following the instructions of a will or burying them as they would have wanted. Many medical associations and bioethicists have argued that explicit consent prior to death is an ethical prerequisite. If this requirement were adopted by hospitals, it is unlikely that many of these cases would ever occur, given that almost no patient would ever think to express this particular preference. A counterargument to this position is that families should be able to use their own judgment for what the dead person would have wanted, similar to how families may consent to organ donation on the deceased’s behalf if the person did not previously express a preference (Guidry-​Grimes, 2016). Another point of ethical contention is determining the best interests of the child. Arguably, bringing a child into the world for the sake of “commemorating” the deceased is unfair to the child. Some are especially worried about this possibility when the one requesting the sperm is not a traditional reproductive partner, such as when the requestor is a parent of the deceased (so biological grandparent to the child). Grief and perhaps guilt could be clouding the requestor’s judgment, and, it is argued, clinicians should not prolong that grief by holding out the hope of keeping some part of their son alive. In these cases, a significant percentage of cryopreserved sperm goes unused, suggesting that requestors often change their mind after some time has passed. The flipside of this argument is that procuring the gametes at the time of death at least gives the family the option of reproduction down the road, and they can decide what is best for their family after they have had time to reflect. Further, one could argue that clinicians are not in a position to determine what counts as “good” motivations for reproduction, and the child at issue would otherwise not exist. The very idea of posthumous reproduction can seem like a drastic overreach of science and improper use of IVF technology. Many believe that on the spectrum of possible IVF uses, posthumous reproduction is on an extreme end. This response reflects a particular cultural understanding of death and norms of respect for the dead. In some cultures, any kind of invasive procedure or cutting of a dead body is a form of desecration, so autopsies and organ donation would be

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prohibited. Families differ widely in what they consider respectful of the deceased, and posthumous reproduction could actually be a way of respecting the values of someone who can no longer carry out their own procreative plans. Hospitals and healthcare professionals have to uphold norms of respect for the dead, so the question is whether they should take a restrictive approach to posthumous reproduction requests or instead handle them on a case-​by-​case basis.

Creating a Donor Child When a child needs a donor match to survive a disease, the child’s parents have some options:  wait to possibly find an adequate match from a stranger on the donor list, have a child the “natural” way in the hope that the sibling will be a better match than a stranger, or take advantage of assisted reproductive technology to test and select an embryo that has the best chances of matching the ill child. The Ayala family made international headlines when they chose the second path to save their daughter, who was diagnosed with a form of leukemia that was expected to take her life within five years without a successful bone marrow transplant. After assessing the bleak odds on the donor list and testing other family members, the Ayalas decided to try to have another child, who would have a 25 percent chance of being a match. It turned out that that child was a match, and bone marrow was taken from her three years after her birth. Ethicists and the public at large debated whether the parents were reproducing for the wrong reasons and whether the youngest child was being used for “parts.” When genetic technology is used to maximize the chances of a successful donor, even more ethical questions are raised.

CASE 25 CREATING A MATCHED SIBLING When Molly Nash was born, her parents learned that she had a number of malformations indicative of Fanconi anemia, a life-​threatening disease that leads to leukemia. At the time, children with this condition usually did not live past six years. A  physician offered to attempt preimplantation genetic diagnosis in order to find an embryo that could be a match for Molly. It took years of ovarian stimulation, testing blastocysts, discarding and retrying, and multiple failed pregnancies before there was a successful pregnancy with a matched donor. The pregnancy itself proved complicated and dangerous, and at one point the Nashes and their physician discussed stem cell procurement from the fetal liver if a miscarriage were to occur. In the end, Adam Nash was born and able to provide life-​saving cord blood to his sister.

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The Nashes’ case raises similar questions as the Ayalas’ case, but in this situation the physicians were experimenting with preimplantation genetic diagnosis before it was very well understood. Depending on one’s view of the moral standing of blastocysts or embryos (see Chapter 3), it could be problematic that this experimentation resulted in so many being discarded. The advancement of genetic technology gave these parents, and many more like them, an immense decision—​ whether to take on all of the risks and hardships of IVF for the sake of potentially creating a suitable donor for a child who will otherwise die. These cases have spurred debates on the appropriate role of clinicians in these situations, where parents are understandably desperate for a cure. Should the government, professional associations, or individual healthcare professionals restrict the use of PGD and IVF? Is there an ethical limit to how blastocysts, embryos, infants, or small children should be treated as sources of therapeutic material for others? While some would argue that healthcare professionals should not offer IVF technology to parents in this situation, others would contend that the parents should be free to fight for their ill child by taking advantage of this technology. Moreover, even if the motivation for reproduction was to save another child, the parents could love the “donor” child for his or her own sake.

Cloning The newest birth technology to capture the public fascination is cloning (Haugen et  al., 2009; Lauritzen, 2001; President’s Council on Bioethics, 2002; UNESCO, 2009). Cloning is the asexual reproduction of an organism by taking the nucleus along with its chromosomal material from a cell of an existing creature and implanting it into an enucleated egg cell or other cell of another creature. Although currently cloning is limited to research and possible generation of new tissues and organs (such as in the case of spinal cord injury), the modified cell, once charged by an electric shock, has the potential to grow and develop into a new being.The resulting creature, barring mutations, will be a genetically identical copy of the original one, a being who has pre-​existed it by a significant amount of time. It is like an identical twin, but with the critical difference that the clone can observe its biological future insofar as it is genetically determined. Of course, there is more to a creature, especially a human, than genes. A being is shaped by environment, time and place, and nurturing. Therefore, even a genetic clone will not be truly identical to its genetic parent. But this asexual reproduction is controversial in part because of the concerns we are tracing in this chapter: concerns about tampering with human nature and its rational control. Seeing even the genetic future is a radical change from the mysterious unknown of more traditional organic development. Cloning also raises the specter of producing multiple copies of people who are particularly suited for certain roles—​warrior, intellectual, political leader. In reality, the chance of such a Brave New World enterprise seems remote. Far more likely

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are the agricultural and livestock applications of cloning and, among humans, some unusual, if sympathetic needs. One imagined scenario is of a couple who, perhaps after a long period of attempting to bear a child, finally conceives and has a baby. Then, after one or the other is incapable of reproducing, the baby is critically injured in an accident. As the child is dying the couple realizes that their only opportunity to bear another child that is genetically their own would be to clone the dying baby. The technology involved is relatively simple, at least compared with research in space or nuclear physics.The parents in this tragic situation might persuade some reproductive medicine specialist, perhaps motivated out of scientific curiosity as well as sympathy for the couple, to attempt to clone another child. In fact, scientists are already stepping forward to make the attempt to clone a human and some people are apparently eager to cooperate. Cloning deceased pets is already an available service, and in January of 2018, the first monkeys were cloned. Cloning humans might not stay science fiction for long. Efforts are under way in several countries to make such attempts illegal. Cloning involves decisions about what constitutes benefit and harm, whether parents should be given the choice to pursue creating a clone, whether the risks to the clone can be justified when there is no being, no patient, to benefit prior to the act of cloning, and whether resources are justly and fairly devoted to such reproductive technologies. Cloning is an ethical controversy that raises the questions of ethical principles that have dominated most of this book and most of the recent bioethics debate. There are not enough cases to build ethical reflection on when considering the repercussions of cloning humans. It is not immediately evident what a virtuous researcher would do—​refuse to attempt cloning or take on this next stage of reproductive technology. Cloning, as well as the other technologies in this chapter, has captured the public imagination because it forces us to decide whether some medical technologies go beyond what is morally tolerable human manipulation of the very processes of life.

Key Concepts Ableism A set of biases based on the assumption that life with any physical or intellectual disability is necessarily a “lesser than” existence. Assisted Reproductive Technologies (ART) Technologies that involve the manipulation of eggs and embryos outside the body, sometimes with donor eggs, donor sperm, or frozen and stored embryos. Cloning The asexual reproduction of an organism by taking the nucleus along with its chromosomal material from a cell of an existing creature and implanting it into enucleated egg cell or other cell of another creature. Coercion When a person, institution, or the state tries to force a desired decision from someone under threat of negative consequence, so the individual believes he

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or she is not fully free to choose otherwise. Negative consequences could include ostracism or social abandonment, financial devastation, or prison, for example. Commodification Treating something or someone as merely worth buying or selling. Exploitation Taking unfair advantage of another person’s vulnerability, which likely violates duties of justice and respect for persons. Genobility The hypothetical social and economic divide between those who are and are not genetically advantaged. In Vitro Fertilization (IVF) The medical procedure whereby an egg is fertilized by sperm outside the woman’s body, normally followed by implantation into the uterus. “In vitro” is the Latin for “in glass.” Hence, the popular expression “test tube baby.” In fact, other pieces of laboratory equipment are usually used. Procreative Autonomy Ability to reflect on and choose for oneself whether and how to have biological children. Pronatalism Ideology according to which reproduction should be encouraged as the best way to promote family values, genetic heritage, or other desirable features of society. Right to an Open Future Right of children (who may or may not be in existence yet) to choose for themselves ultimately what to believe and how to live. Surrogate A woman who bears a child for another woman with the intention that the other woman become the nurturing parent.This can involve implantation of the embryo following in vitro fertilization of the other woman’s egg cell or artificial insemination of the surrogate mother.

Bibliography Ahmed, Amel. “Offshore Babies: The Murky World of Transnational Surrogacy.” Aljazeera America, August 11, 2014. http://​america.aljazeera.com/​articles/​2014/​8/​11/​offshore-​ babies-​thebusinessoftransnationalsurrogacy.html, accessed August 18, 2019. Alpern, Kenneth D., ed. The Ethics of Reproductive Technology. New York: Oxford University Press, 1992. American College of Obstetricians and Gynecologists Committees on Ethics and Genetics. “Ethical Issues in Genetic Testing.” ACOG Committee Opinion 410 (2008). www.acog. org/​Clinical-​Guidance-​and-​Publications/​Committee-​Opinions/​Committee-​on-​ Ethics/​Ethical-​Issues-​in-​Genetic-​Testing?IsMobileSet=false, accessed August 18, 2019. Ashley, Benedict M., Jean DeBlois, and Kevin D. O’Rourke. Health Care Ethics: A Catholic Theological Analysis, 5th ed. Washington, DC: Georgetown University Press, 2006. Brake, Elizabeth, and Joseph Millum. “Parenthood and Procreation.” The Stanford Encyclo­ pedia of Philosophy, Spring 2018 ed., ed. Edward N.  Zalta. https://​plato.stanford.edu/​ archives/​spr2018/​entries/​parenthood, accessed August 18, 2019.

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Cohen, Cynthia B., ed. New Ways of Making Babies: The Case of Egg Donation. Bloomington, IN: Indiana University Press, 1996. Collins, Rebecca. “Posthumous Reproduction and the Presumption against Consent in Cases of Death Caused by Sudden Trauma.” Journal of Medicine and Philosophy, 30 (2005): 431–​442. ESHRE Task Force on Ethics and Law. “ESHRE Task Force on Ethics and Law 11: Posthumous Assisted Reproduction.” Human Reproduction 21, No. 12 (2006): 3050–​3053. Ethics Committee of the American Society for Reproductive Medicine. “Posthumous Retrieval and Use of Gametes or Embryos: An Ethics Committee Opinion.” Fertility and Sterility 110, No. 1 (2018): 45–​49. Feinberg, Joel. “On the Child’s Right to an Open Future,” in Whose Child?, ed. W. Aiken and H. LaFollette, Totowa, NJ: Rowman & Littlefield, 1980, pp. 124–​153. Finer, Lawrence, Lori F. Frohwirth, Lindsay A. Dauphinee, Susheela Singh, and Ann M. Moore. “Reasons U.S. Women Have Abortions:  Quantitative and Qualitative Perspectives.” Perspectives on Sexual and Reproductive Health 37, No. 3 (2005): 110–​118. Gostin, Larry, ed. Surrogate Motherhood:  Politics and Privacy. Bloomington, IN:  Indiana University Press, 1990. Guidry-​ Grimes, Laura K. “The Case of Ms. D:  A Family’s Request for Posthumous Procurement of Ovaries.” Journal of Clinical Ethics 27, No. 1 (2016): 51–​58. Guttmacher Institute. Abortion Worldwide 2017:  Uneven Progress and Unequal Access. New York: Guttmacher Institute, 2018. Hague Conference on Private International Law. Private International Law Issues Surrounding the Status of Children, Including Issues Arising from International Surrogacy Arrangements. The Hague, Netherlands: Hague Conference on Private International Law, 2011. https://​ assets.hcch.net/​upload/​wop/​genaff2011pd11e.pdf, accessed August 18, 2019. Haugen, David M., Susan Musser, and Kacy Lovelace, eds. The Ethics of Cloning. Detroit, MI: Greenhaven Press, 2009. Ho, Anita. “The Individualist Model of Autonomy and the Challenge of Disability.” Bioethical Inquiry 5 (2008): 193–​207. Hull, Richard T., ed. Ethical Issues in the New Reproductive Technologies. Amherst, NY: Prometheus Books, 2007. Kaposy, Chris. Choosing Down Syndrome:  Ethics and New Prenatal Testing Technologies. Cambridge, MA: MIT Press, 2018. Kass, Leon R., and James Q. Wilson. The Ethics of Human Cloning. Washington, DC: AEI Press, 1998. Kolata, Gina. “More Babies Being Born to Be Donors of Tissue.” New York Times, June 4, 1991. www.nytimes.com/​1991/​06/​04/​health/​more-​babies-​being-​born-​to-​be-​donors-​ of-​tissue.html, accessed August 18, 2019. Lauritzen, Paul. Pursuing Parenthood:  Ethical Issues in Assisted Reproduction. Bloomington, IN: Indiana University Press, 1993. Lauritzen, Paul, ed. Cloning and the Future of Human Embryo Research. New York: Oxford University Press, 2001. McGee, Glenn, ed. The Human Cloning Debate, 2nd ed. Berkeley, CA:  Berkeley Hills Books, 2000. Murray, Thomas H. The Worth of a Child. Los Angeles, CA:  University of California Press, 1996.

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Natoli, Jaime L., Deborah L. Ackerman, Suzanne McDermott, and Janice G. Edwards. “Prenatal Diagnosis of Down Syndrome: A Systematic Review of Termination (1995–​ 2011).” Prenatal Diagnosis 32, No. 2 (2012): 142–​153. New Jersey Commission on Legal and Ethical Problems in the Delivery of Health Care. After Baby M:  The Legal, Ethical and Social Dimensions of Surrogacy. Trenton, NJ:  New Jersey Commission on Legal and Ethical Problems in the Delivery of Health Care, 1992. Parens, Erik. “The Thorny Ethics of Prenatal Testing.” Time, February 5, 2014. http://​time. com/​4584/​genetic-​testings-​brave-​new-​world/​, accessed August 18, 2019. President’s Council on Bioethics. Human Cloning and Human Dignity. New York: Public Affairs, 2002. President’s Council on Bioethics. Reproduction & Responsibility:  The Regulation of New Biotechnologies. Washington, DC: President’s Council on Bioethics, 2004. Reynolds, Joel Michael. “Three Things Clinicians Should Know about Disability.” AMA Journal of Ethics 20, No. 12 (2018): e1181–​e1187. Robertson, John A. Children of Choice:  Freedom and the New Reproductive Technologies. Princeton, NJ: Princeton University Press, 1994. Sacred Congregation for the Doctrine of the Faith.“Instruction on Respect for Human Life in Its Origin and on the Dignity of Procreation.” Origins 16, No. 40 (1987): 698–​711. Sankoorikal,Teena-​Ann V.“Using Scientific Advances to Conceive the ‘Perfect’ Donor: The Pandora’s Box of Creating Child Donors for the Purpose of Saving Ailing Family Members.” Seton Hall Law Review 32, No. 3 (2003): 583–​615. Shakespeare, Tom, Lisa Iezzoni, and Nora Groce. “Disability and the Training of Healthcare Professionals.” The Lancet, November 28, 2009. www.thelancet.com/​journals/​lancet/​ article/​PIIS0140-​6736(09)62050-​X/​fulltext, accessed August 18, 2019. Skotko, Brian G., Susan P. Levine, and Richard Goldstein. “Self-​Perceptions from People with Down Syndrome.” American Journal of Medical Genetics Part A, 155A, No. 10 (2011): 2360–​2369. Stark, Barbara. “Transnational Surrogacy and International Human Rights Law.” ILSA Journal of International & Comparative Law 18, No. 2 (2011): 369–​386. Steptoe, Patrick C., and Robert G. Edwards. “Birth after the Reimplantation of a Human Embryo.” Lancet 2, No. 8085 (1978): 366. Twine, France Winddance. Outsourcing the Womb: Race, Class and Gestational Surrogacy in a Global Market. New York: Routledge, 2011. Whitehead, Mary Beth, with Loretta Schwartz-​Nobel. A Mother’s Story: The Truth About the Baby M Case. New York: St. Martin’s Press, 1989. UNESCO, International Bioethics Committee. Report of the IBC on Human Cloning and International Governance. Geneva: United Nations, 2009.

12 SOCIAL ETHICS OF MEDICINE Allocating Resources, Health Insurance, Transplantation, and Human Subjects Research

LEARNING OBJECTIVES FOR THIS CHAPTER (1) Explain the principle of social utility in bioethics, and differentiate it from principles and rules that are prominent at the level of individual relationships. (2) Analyze how ethical concerns for justice can and should affect decisions regarding health insurance, transplantation, and human subjects research. (3) Illustrate how ethical tensions can arise when trying to establish healthcare policies and structures that respect persons but that also promote the greatest good for the greatest number of people.

Thus far the issues addressed in this volume have focused on the level of the individual patient–​ healthcare professional relationship. The Hippocratic ethic committed the physician to benefiting the patient. The principles clustered under the idea of respect for persons add duties to the agenda that do not necessarily end up benefiting the patient, but nevertheless still focus on the individual receiving medical services. There were at least two points at which hints of a more social concern emerged. In Chapter 7 we noted that modern discussions of confidentiality permit or even require disclosure of confidential information if necessary to provide significant benefit to third parties. In Chapter 8 we noted that Pope Pius XII considered medical treatments extraordinary if they involved a grave burden, even a grave burden to other people. In both cases we delayed exploration of these third-​party interests. This chapter opens bioethical considerations to a more social dimension, asking when, if ever, our duties should include promoting the welfare of others or fulfilling duties to others.

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The Need for a Social Ethic for Medicine The Limits of the Ethics of Individual Relations The Hippocratic formula calls for benefiting the patient (in the singular). Ancient Hippocratic medicine was not oriented toward the health or welfare of the community or of other individuals. Modern medicine and modern interpretations of the oath have often continued this individualism. For example, until 2017 the Declaration of Geneva stated that “The health of my patient will be my first consideration.” In 2017, this was extended to include the well-​being of the patient as well as health, but it still did not extend beyond the individual patient. Patient is in the singular. Even those codes and oaths that express commitment to patients in the plural still only focus on the single physician’s patients. There is no concept of moral community in the Hippocratic tradition. It focuses on patient welfare rather than more inclusive welfare of other persons or of society as a whole. When modern ethics began to shift from a Hippocratic ethic of benefit to a more deontological ethic of rights and duties, drawing on the notion of respect for persons and the underlying principles of fidelity, autonomy, veracity, and avoiding killing, the new ethic was still addressing problems of the individual patient–​ physician relation—​problems of confidentiality, informed consent, disclosure of diagnoses, and the care of the dying patient. It was as if in all the world there were only one physician and one patient. Similarly, ethics for nurses and other healthcare professionals zeroed in on the individual patient. The moral problem was figuring out how the patient ought to be treated. The dispute between the consequentialist Hippocratic ethic and nonconsequentialist ethic of respect for persons was inside the tradition of individualism. If respect for persons seemed to be winning the day, defeating the more traditional Hippocratic paternalism, it was because the controversies of the day posed questions of how to treat the individual patient. In that world, autonomy and the related respect-​for-​persons principles seemed to carry the day. But autonomy’s triumph was only temporary (Veatch, 1984). By 1957, the American Medical Association added a provision that “the responsibilities of the physician extend not only to the individual, but also to society” (American Medical Association, 1957). In its major revision of 1980 this was revised to read, “A physician shall recognize a responsibility to participate in activities contributing to an improved community” (American Medical Association, 1981, p. ix). By the turn of the century, moral problems in medicine were more significantly social. This shift required confronting the problems of ethical individualism. Both Hippocratic beneficence and respect for persons ignore duties to third parties. In the contemporary world, ignoring society increasingly becomes impossible. Medicine must confront the issues of allocating scarce medical resources, providing health insurance, distributing transplantable organs, and conducting research on human subjects. In each of these areas, the goal is not improving the welfare of the individual patient but benefiting members of a community of people who often

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have conflicting interests. Before examining these issues, we need to examine what ethical principles can be brought to bear on them.

The Social Ethical Principles for Medical Ethics Social Utility It seems, at first, as if the principle for a social ethic ought to be what can be called social utility. In Chapter 6 we saw that the principles of beneficence and nonmaleficence can be combined into an overall measure of consequences called utility. In that chapter we were examining Hippocratic utility (benefits and harms to the individual patient). In Figure 20 we repeat Figure 8 from Chapter 4, so we can discuss the social ethical principles. In Figure 20 social utility takes its place as a consequence-​maximizing principle at the social level. The Nature of the Principle of Social Utility Beneficence and nonmaleficence applied at the social level take into account all benefits and harms to all parties affected, not just the individual patient. Here the goal is the greatest aggregate good. This is the ethical principle of the classical social utilitarians, people like Jeremy Bentham (1996 [1789]) and John Stuart Mill (2001 [1863]). This is the ethical principle underlying standard cost–​benefit

Consequentialist Principles Subjective 1. Beneficence 2. Nonmaleficence Individual

– –Hippocratic Utility– – Objective 1. Beneficence 2. Nonmaleficence

Duty-based Principles

The Ethic of Respect for Persons 1. Fidelity 2. Autonomy 3. Veracity 4. Avoidance of Killing

Subjective 1. Beneficence 2. Nonmaleficence Social

– –Social Utility– – Objective 1. Beneficence 2. Nonmaleficence

FIGURE 20   Ethical

Principles

Justice

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analysis and many other strategies for health planning. In such analyses, planners attempt to determine the potential benefits and the potential costs (economic, social, and medical) of alternative uses of resources. Then they follow the course that will produce the most net benefit (often expressed per unit of cost). Their principle is social utility—​ that is, beneficence and nonmaleficence applied socially—​to all parties potentially affected. This is just like Hippocratic utility maximizing, except that it is not limited to the individual patient. Critics raise questions about the social utility principle.Two kinds of problems arise, problems of quantification and problems of equity. Quantification Problems First, problems exist in determining what maximizes the net good.This is particularly severe in healthcare, where the benefits include such nebulous and subjective goods as relief of pain, keeping a patient alive until some important family event occurs, or relieving mental anguish. Critics claim that these are almost impossible to quantify and that efforts to do so expose the planners to the risk of incorporating biases in assigning weights to certain outcomes. While the quantification problems are severe, social scientists have become very sophisticated in providing such quantifications. For example, considerable work has been done in developing scales that permit comparison of different disease states. Robert Kaplan’s (Kaplan and Bush, 1982) Quality of Well-​Being Scales were used by the Oregon Health Services Commission (1991) in the initial ranking of diagnosis–​treatment pairs for its experiment in allocating Medicaid funds. This project attempted to decide which of several hundred possible medical interventions deserve priority. The commission asked people to rank various conditions on a scale from 0 to 1, with 0 being comparable to death and 1 being normal health. From this information, together with scientific data on the possible effects of the intervention and their costs, the commission staff could calculate the cost per unit of expected benefit. These studies have been developed with great care and sophistication. Others have attempted to develop a single unit that integrates both the number of years of survival from an intervention and the quality of life that survival brings. The unit, called the quality-​adjusted life-​year (QALY), permits comparison on a single scale of interventions that primarily extend life with those that primarily improve the quality of life. These sophisticated health planning measurements can be used in calculations of benefit/​ harm ratios so that alternative interventions can be ranked in terms of the amount of well-​being or the number of QALYs bought per unit of resource invested. Problems of Inequity The real controversy in the use of aggregate net benefits for comparing different treatments is that it does not consider how benefits are distributed. According to the principle of social utility, the morally correct course is the one that will

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maximize the aggregate net benefit per unit of resources. This may hide the fact that the benefits are very unevenly distributed. It is the nature of medicine that some conditions and some patients are much harder and less efficient to treat than others. Patients with multiple chronic illnesses are less efficient to treat than those with acute, treatable conditions. People living in rural areas or inner cities may be harder to reach with medical services than suburbanites. A cost–​benefit analysis comparing a healthcare investment for upper-​middle-​class suburbanites with one for rural area or inner city patients will show that the suburban health plan produced more benefit (lives saved or QALYs) per unit of investment. The moral issue is whether giving such priorities would be ethical. It may turn out that the healthcare system that is the most efficient is not the most fair or just or equitable. If the most efficient system is not the most fair, what is the proper relationship between these two ethical concerns?

Justice as an Alternative Social Ethical Principle If we are not satisfied morally with the allocation of medical resources solely on the basis of maximizing the aggregate (net) good, we need a principle that pays attention to the distribution of the good. The principle of justice plays this role. It is a way of showing respect for persons at the social level; hence, it appears in Figure 20 in the lower right quadrant as a duty-​based principle at the social level. Justice is the principle that people in similar situations should be treated equally. The key is determining when people are considered to be in morally similar situations. Different theories of justice identify different characteristics. In Greek culture, noble or aristocratic birth was considered relevant in deciding what constituted a fair allocation. In modern cultures, especially those influenced historically by Judeo-​Christian thought, justice is interpreted in a more egalitarian manner. Justice is seen as requiring that people have opportunities for equality of well-​being. In healthcare, this often leads to distributing health services on the basis of need. While need could be determined in terms of relative overall well-​ being, healthcare is often allocated on the basis of medical need. We saw in Chapter 6 that medical well-​being is a complex concept, including considerations of preventing death, curing disease, relieving suffering, and promoting health. Determining who is worst off medically requires some agreement on the value judgments to be made. These are the same problems that would be faced, however, by those who would strive to allocate medical resources on the basis of maximizing overall social utility. In either case, we need a metric for comparing medical well-​being. While the social utilitarian might use units of QALYs to determine how to maximize their number in the aggregate, a proponent of the principle of justice would strive to make the distribution of QALYs as equal as possible. Many ways might be used for conceptualizing opportunities for equality of well-​being. If all that is called for is an opportunity for well-​being, some would

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hold that, if people have had opportunities to be healthy, they do not have the same claim as others, even though they may be in equal medical need. A person needing a liver transplant as a result of a history of alcoholism might, according to this view, not be given the same claim as one with other causes of liver failure. If a health-​r isky behavior is voluntary (a controversial assumption), some would claim that those needing medical care as a result of these behaviors have a lesser claim (Moss and Siegler, 1991;Veatch, 1980). In determining who is in the greatest need, controversy also exists over whether we should consider people’s well-​being in a “moment-​in-​time” or over a lifetime. A moment-​in-​time perspective would compare people at a particular time, focusing medical resources on those who were the worst off at that time. An “over-​a-​lifetime” perspective would compare entire lives. A frail 90-​year-​old with chronic illnesses could be seen as better off than a healthy 20-​year-​old with the genes for Huntington’s disease, which will render him bedridden in another decade or so. Triage based on treating the sickest among those who can benefit is a way of allocating according to egalitarian justice from the moment-​in-​time perspective (Baker and Strosberg, 1992). Some medical services such as relief of acute pain, treatment for acute, curable illness, and provision of preventive medical service such as immunizations seem to many to be distributed fairly on the basis of who has the greatest need at the moment. Other healthcare services are seen as fairly distributed on the basis of who are the worst off over their lifetimes. The key to the principle of justice is that spreading resources according to need is a duty of ethics even if it does not maximize the total good done. Those who accept a principle of justice see it as a consideration in a social ethic of healthcare—​for deciding how healthcare resources should be allocated. It would, for them, be a factor in how health insurance benefits should be structured, how a transplant program should operate, or how human subjects research should be conducted. Whether justice also survives as a duty after all other moral principles are taken into account depends on how one ends up ranking and balancing the claims of the competing moral principles. That is a matter that was considered in Chapter 4. A pure egalitarian basis for distributing healthcare resources seems implausible because that could lead to reducing all patients to the lot of the worst off. All people equally dead would be purely egalitarian. A defender of egalitarian justice would have to explain how other principles might come into play to avoid this outcome.

Allocation of Healthcare Resources The area of bioethics that poses social ethical questions most dramatically is the allocation of healthcare resources. In the era of escalating healthcare costs, managed care, and global budgets for healthcare, the most controversial ethical issue is how scarce resources should be allocated (American Medical Association, Council on

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Ethical and Judicial Affairs, 1995; Anderlik, 2001; Daniels and Sabin, 2008; Menzel, 2007; Newdick, 2005; President’s Commission, 1983; Ubel, 2000).

The Demand for Healthcare Services In the United States in 2016, we spent about $3.3 trillion on healthcare.1 That is more than $10,348 per person and 17.9 percent of the gross domestic product. In spite of the fact that this is double the median of comparable countries and 27.7 percent higher than the next highest country (Switzerland) (Sawyer and Cox, 2008), the health of Americans is in a sorry state. It ranks 43rd in the world in life expectancy at birth2 and 56th in infant mortality.3 What is not recognized is that the continual recitation of aggregate social indicators such as life expectancy and infant mortality implies that maximizing aggregate health is the morally legitimate goal. In 2009, over 50 million Americans had no health insurance (DeNavas-​Walt et al., 2010, p. 23). By 2016, as the Affordable Care Act began to take effect, the number had dropped to 28 million (Barnett and Berchick, 2017), but increased by 3.2  million people in 2017 as the Trump administration tightened access (Bump, 2018). Still others were covered only part of the year or were woefully underinsured. There are dreadful differences in health based on income, education, and race. Enormous international differences exist as well.

The Inevitability of Rationing Some people argue that we do not need to ration healthcare. If we just diverted resources from foolishness and waste elsewhere, enough would be available for healthcare. At this point, one can plug in his or her favorite budget target: the defense department, junkets for members of Congress, tobacco subsidies, highway construction, and the like. This may be a good argument when we talk to people outside of healthcare, but still it is not realistic. The cost of doing everything we would like to do in medicine for everyone who would like to receive it exceeds the gross domestic product. And that is without considering obligations to others in less wealthy parts of the world. Rationing is inevitable. There will always be more demands for healthcare services (some of which are only marginally helpful) than there are resources. In such a world, rationing is morally necessary. Even if we recognize that there are enough funds to provide a decent minimum for everyone (and then some), every health plan must exclude some services—​not only luxuries and useless treatments, but also marginal tests and procedures for some patients who have high-​priority needs.4 Let’s try to get at the moral logic of this rationing, what is often expressed as a movement for cost containment.

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CASE 26 DRG LIMITS AND MYOCARDIAL INFARCTION DRG 282 is the Medicare diagnosis-​related group for AMI (acute myocardial infarction) without complications or comorbidities, patient discharged alive. All Medicare patients with this diagnosis in a given hospital generate a flat Medicare reimbursement to the hospital. Other hospitals would get the same reimbursement adjusted for regional and other variables. If the physicians at the hospital treat a patient for less than the cost of the reimbursement, the hospital keeps the difference—​sometimes sharing the surplus with the physicians as an incentive to treat economically. If the cost exceeds the reimbursement, the hospital must cover the difference. If the hospital has other services with surpluses, it can “cost-​shift” to cover any such losses. That raises ethical issues, however. Either the services generating surpluses are getting reimbursed at too high a rate or the patients in the services generating surpluses are being undertreated. Too high a rate should lead to “ratcheting down” the reimbursement to a more appropriate amount, so ideally, there should be no surpluses in other services to make up any shortfalls. In a study of three hospitals conducted some years ago, it was found that the average cost per patient was slightly over $10,000 for patients in DRG 282 (Veatch, 1986a). (Since the time of the study the length of stay in the hospital has decreased, but the costs have increased.) Of course, this is not the cost for each patient. Some who are difficult to treat will cost much more; other, easier cases, cost less. But this was the cost on average. The scheduled reimbursement at the time was $7100 per patient. Thus, if those hospitals treated 100 patients in a given time period, the cost would be over $1,000,000, but while they would have a global budget5 it would receive only 100 times $7100, or $710,000, to pay the costs of the care for the group. It does not take a degree in accounting to realize that the cardiology service cannot survive on this basis without some subsidy. Assuming no other services are generating surpluses—​and they should not be in a well-​adjusted system—​ethically, how should cardiologists respond? The medical records of this group of hospitals showed that the average length of stay in the hospital for a myocardial infarction at the time was 13 days.6 This was the average time that clinicians in these institutions believed that their patients needed to stay to obtain ideal medical benefit.7 Further analysis of the individual medical records revealed that one of the cardiologists consistently had lengths of stay well beyond the average. His patients averaged 18 days of stay, with an average cost of about $14,000. It was at first suspected that he might be a particularly skilled cardiologist who, therefore, assumed responsibility for particularly difficult patients. This, however, proved not to be the case. There was no evidence that his patients had any different degree of severity than the other patients at these institutions. What is the proper response of the cardiologists to the economic pressure from the Medicare DRG system?

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Ethical Responses to the Pressures for Cost Containment The different ethical principles discussed in this volume offer very different ethical responses to the dilemma of pressures for cost containment. Taking various principles from Figure  20, we can see their implications. Examining those implications will provide a summary of the alternative ethics available in healthcare.

Ethical Principles at the Level of the Individual The Subjective Form of Hippocratic (Patient-​Benefiting) Utility The original form of the Hippocratic Oath would have each physician treat for myocardial infarction (MI) by striving to benefit the patient according to the physician’s judgment. That, of course, is exactly what these physicians, including the atypical physician who insisted on unusually long lengths of stay for his patient, were trying to do. The outlier physician’s long hospital stays were what was called for by subjective Hippocratic utility. That physician believed the long hospital stays were best, even though colleagues would disagree. The graph in Figure  21 is a schematic representation of the cardiology resource problem. It can function as a general model of clinician investment of resources in patient care. The length of stay, which is represented on the horizontal axis, is an approximation of resources invested.8 On the vertical axis, the aggregate (i.e., accumulated) net medical good done is represented. The curve shows that early units of investment are more efficient than later ones. They do more good than later units, which is another way of saying the early days in

Aggregate Net Medical Benefit

b N – (a + b) N – a

a N

Days of Stay FIGURE 21   Aggregate

Net Benefit as a Function of Days of Stay

N+5

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the hospital do more good than the later ones. If one keeps investing in more and more days, eventually no more good will be done; the curve becomes flat. A patient who is kept in the hospital even longer may actually begin to experience a net harm. Iatrogenic infection and other hospital-​caused harms lead the curve to turn down, indicating that the aggregate good done for the patient may actually decrease. The Objective Form of Hippocratic (Patient-​Benefiting) Utility Shifting from the goal of patient welfare assessed subjectively by the individual clinician to a more objective measure of effects through peer review and outcomes research may, by eliminating useless medical treatment, actually increase the net good done for the patient, while as a side-​effect conserving resources. Imposing peer review constraints on the outlier who is the intensive utilizer of days of stay will drive days of stay back to the consensus of colleagues. This length of stay, symbolized by point N in Figure 21, approximates objective net medical benefit. Driving care back to this level by peer review is primarily motivated out of the modified Hippocratic concern of objectively promoting the patient’s welfare, but resources are saved as a side-​effect. (Of course, peer review may also identify some under-​utilizers of treatment resources. Aggressive, patient-​welfare-​oriented peer review will increase expense in those cases. The net savings will be the reductions in overtreatment minus adjustments for under-​ treatment.) The concern is still patient-​centered; it focuses on patient welfare. With Hippocratic utility, cost containment is a fringe benefit. The Principle of Autonomy Patients’ estimates of their welfare may not be the same as the consensus of the professional peer review. Patients may rationally differ from healthcare professionals on what counts as a medical benefit. They may consider nonmedical goods as well. The patient may contemplate going home (consider the desire for home cooking or seeing the grandchildren). Patients may decline what peer reviewers would determine to be real medical benefit because they evaluate medical and nonmedical benefits differently (see Chapter 6 for more on different spheres of well-​being). Rational persons do not want resources spent on treatments they are trying to refuse. Patients are saying no to last ditch cancer surgery when the face is half eaten away by cancer, to artificial hearts that leave one half comatose, and to respirators pumping oxygen into unconscious, decaying bodies. When patients say no, it is foolish to spend valuable resources forcing care on them even when consensus of medical expertise favors intervention. If we add the principle of autonomy to the calculus, we reach the conclusion that it is morally wrong to benefit a patient

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who does not want to be benefited. The result of the shift to an objective form of Hippocratic utility and adding the principle of autonomy is a modified Hippocratic principle: Benefit the patient according to some objective standard of medical benefit rather than subjective judgments of benefit unless the patient (or surrogate) rejects the care being offered. This modified Hippocratic formula is still patient-​centered, but it now focuses on the rights as well as the welfare of the patient. It is based on autonomy as well as modified Hippocratic utility. We get another fringe benefit. If some of the hundred MI patients decline some marginal hospitalization, the average days of stay drops further. An amount of additional care would be refused that can be symbolized by the interval a in Figure 21. Average length of stay would be driven back to point labeled (N –​ a). Costs would drop further.9 The resource allocation question could be addressed by simply letting the principle of autonomy have free rein. Some propose a free-​market solution to the problem of healthcare resource allocation. Instead of worrying about the shortfall in the Medicare funding, we could go entirely to a privately funded system in which people self-​pay for their healthcare either by paying out of pocket with whatever resources they have available or by buying private insurance in advance that defines the extent of the coverage available. Of course, some would get very inadequate healthcare by this free-​ market approach. Pure libertarians would, however, be willing to take these consequences. They claim that the fact that some would have to go without would be unfortunate, but not, they say, unfair (Engelhardt, 1996). Individuals might be moved by charity to provide assistance, but there would be no right, no entitlement, to any healthcare services.This would be a purely autonomy-​driven healthcare system. The moral reality, however, is that almost no one completely holds this approach to resource allocation based solely on the principle of autonomy. Every nation in the world recognizes some entitlement to some healthcare services. Even the United States recognizes entitlements through Medicare, Medicaid, Tricare (the healthcare program of the United States Department of Defense Military Health System), the Affordable Care Act, and the right of access to hospitals for emergency care. The question is on the basis of what ethical principle will these entitlements rest. Based on what was said earlier in this chapter, two alternative social ethical principles are candidates.

Ethical Principles at the Social Level We have now cut the fat out of the system.What if lowering the outlier physician’s level of care in the name of patient welfare and granting autonomy still leaves costs above reimbursement levels? Neither Hippocratic utility nor autonomy can help any more. Clinicians who stay focused on the level of individual responsibility would say that the cuts have gone as far as they should. They believe DRG reimbursement should rise to this level (N –​ a in Figure 21).

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The principles considered thus far focus on the individual patient: his or her medical welfare (assessed either by the individual clinician or by more objective standards) and his or her autonomy. Physicians today are quite comfortable with this approach. These operate on the top half of Figure  20, the principles that deal with the individual. Most clinicians now accept both the shift to objective standards for assessing outcomes and respect for patient autonomy. Still, resources may not be adequate to pay for all objectively beneficial and desired care. In fact, in a world of scarce resources, some medical services will almost certainly be considered too trivial, too marginal, or too expensive to be covered in basic insurance plans. If insurance in such a world of scarcity paid for literally every possible benefit, no matter how marginal, it would have to come at the expense of using those valuable resources for something else outside of healthcare that could easily be more important. In other words, a rational health insurance would set coverage so that not every marginal, inefficient benefit would be covered. In the case of the DRG for MI, if treatments are eliminated for which there is no objective evidence of real benefit and those that are not desired by the patient are also eliminated, some savings will accrue. In the group of hospitals that provided the data, it was estimated that about $1000 in costs per patient would be eliminated by these reductions. That would have reduced costs to an average of about $9000 by eliminating only procedures for which there is no evidence of positive effects and those that patients do not want. But that still leaves a gap of $1900 per patient between reimbursement and what clinicians and patients would agree is useful and desirable. The ethical question raised is what should be done with regard to marginally beneficial but expensive care. In the graph in Figure 21, consider care in the range marked by small b. This represents the day when the patient would be almost as well off out of the hospital. The curve is still rising, but very gradually. By definition these services are beneficial.They do not offer great benefit, but peer review and objective outcomes measures lead both patients and peer reviewers to consider them on balance to be slightly beneficial after both the risks of side-​effects and the hoped-​for benefits have been considered. They are, however, expensive in comparison to benefit. From the physician’s point of view they are beneficial; from the patient’s point of view they are desirable. Yet, from society’s point of view these services constitute marginal, inefficient care. The resources could be used much more effectively somewhere else. Perhaps they could also be used more fairly elsewhere. To address the ethical principles underlying decisions of this sort, we need to move to the lower level of Figure 20, to the ethical principles labeled social. Consider the choices that need to be made from the point of view of people planning their own insurance system.Would they want insurance to cover marginally beneficial care? Would they, for example, want a new drug for lowering cholesterol that costs $1000 a year covered when an older drug is almost as effective and only costs a few dollars a year?

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We do not insist on ideal care in any other sphere of life. We do not fund ideal levels of housing, food, or education. Almost certainly we should not fund as part of any basic insurance coverage (public or private) all possible beneficial and desired healthcare no matter how marginal the benefit. In basic healthcare plans we almost certainly will not fund cosmetic surgery or exotic infertility treatments, even though we should acknowledge that for some people they offer some benefits that are desired. Likewise, we probably should not fund every imaginable diagnostic test or therapy, including those that produce very low probability of beneficial information or results. Funding all healthcare that is beneficial and desired will have to come at the expense of moving even further away from the ideal in these other spheres of life. Insurance premiums and reimbursement should take all this into account. If we want resources left for other goods in life, we do not want to reimburse for all possible beneficial care. We do not even want to reimburse for all beneficial and desired care. The only question left is what social ethical principle we ought to use for setting the limits. In the case of Medicare reimbursement for MI, funding will require “backing down the curve,” moving somewhat to the left of the point (N –​ a) to eliminate care in the range designated as b. It is apparent, however, that there is no obvious point that would be the right amount of this marginally beneficial, desired care to be eliminated. Moreover, social utility and justice provide different answers.

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Social Utility Both those committed to social utility and those committed to justice would back down the curve in Figure 21, moving to the left from the maximal amount of good that could be done (point N) for the MI patients. They would even move to the left of all the beneficial care that the patient desired (point N –​ a). They would do so in different ways, however. Social utilitarians would eliminate expenditures as long as the marginal resource would do more good spent somewhere else. Backing down the curve, they would stop at the point at which the marginal resource spent on MI patients would do more good than if it were spent in any other way. Mathematically, if the highest point on the vertical axis (point N) is designated as Bmax, they would move from that point to the left until the slope of the curve for MI patients was as steep or steeper than what the slope would be on any other curve representing expenditures for any other purpose. This is the driving idea behind cost–​benefit analyses. Social utilitarians strive to identify alternative benefits that could have been obtained from each dollar spent on marginal health resources. The Oregon Health Services Commission was doing precisely this when it did an initial ranking of possible uses of its Medicaid dollars. It attempted to identify the most efficient uses and ranked them highest. At least at the time, inefficient uses tended to be of two kinds: services for patients who would very

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likely do well even without them (e.g., the later days of stay for MI patients) and services for patients who were so ill that the services had almost no chance of helping (such as end-​stage AIDS patients). When the commissioners and others looked at the list, however, they found the initial results morally unacceptable. Some patients who were, according to their data, inefficient to treat nevertheless seemed to have moral claims, claims that are best characterized as claims of justice. Justice In the case of the allocation of limited funds for MI patients, those committed to the principle of justice—​at least those who interpret justice to require allocating on the basis of need—​would back down the curve in Figure 21 to the point at which the MI patients would be as poorly off or worse off than any other patients. As long as there were other patients in the system worse off, they would divert the funds. If the DRG system were properly designed and its goal were to target resources for the worst off, the reimbursement would be arranged precisely to accomplish that goal. A perfect reimbursement would exist, according to one who would give justice the first priority, if the $7100 was exactly the amount needed to keep the MI patients from being worse off than anyone else. If the cardiology department operates on a global budget (i.e., if it allocates its total income among its total group of patients), this would still leave the problem of how to allocate among its patients. If the department allocated its resources solely on the basis of the principle of justice, it would pay attention only to who is the worst off. It would not consider how the funds could be used most efficiently, which would be the concern of the social utilitarians. Many people believe that both justice and social utility are relevant to the allocation decision, so that some reconciling of social utility and justice is called for. How this might be done was the topic of Chapter 4.

The Role of the Clinician in Allocation Decisions There is one final question that must be addressed in the general discussion of allocating scarce resources before turning to some specific examples. Should saving resources be a goal of the clinician at the bedside? There is a real split among clinicians as well as lay people on this issue. Two options are available, neither of which is terribly attractive.

Make the Clinician the One Who Decides Where to Cut Costs Making the clinician society’s cost-​containment agent has advantages. Clinicians may know where cuts can be made. This option also has the advantage of keeping

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bureaucrats out of decisions. However, if clinicians take on this role, they would abandon their traditional commitment to be exclusively agents for their patients. Those who advocate this role for clinicians are, in effect, lobbying for abandoning the exclusive commitment of clinicians to the individual ethical principles and incorporating the social ones into their moral mandate. There are also serious objections to asking clinicians to take on this role. These problems are both practical and principled. Practical Problems in Calculating There are practical problems in expecting the clinician at the bedside to be society’s gatekeeper.We saw in Chapter 6 that deciding what counts as a benefit and a harm is a complex, subjective task. Acting as a rationing agent inevitably involves trade-​offs of competing goods. Clinicians may make value trade-​offs in systematically atypical ways. For example, some trade-​offs will require comparing the value of the medical care being contemplated with other medical goods. An extra day in the hospital for the MI patient must be compared with an extra day in the nursing home for the Alzheimer’s patient, funding a well-​ baby clinic, or providing pain relief for cancer patients. It could be argued that cardiologists should be expected to make these trade-​offs atypically. They probably will (and perhaps ought to) give too much priority to cardiology just as other specialists would see special value in the services they provide. Recall that we are speaking of eliminating real, if marginal, benefits. The specialist who has devoted his or her life to one particular medical service is in a poor position to decide how much value that service offers in comparison to other medical services. It can be expected that clinicians will be biased in these tasks. They are not malicious; this kind of bias is simply the nature of specialization. People grow to place unusual values on the services they provide. Surgeons are likely to prefer to cut; radiologists prefer radiation; medical oncologists prefer chemotherapy. None of them should be placed in a position of deciding when to sacrifice their services for those of other practitioners. Likewise, clinicians will have to compare medical goods with nonmedical goods if they are societal gatekeepers. They must decide whether funds are better spent on medicine or on education, housing, or food stamps. Once again, they cannot be expected to be in a position to make these trade-​offs. All experts ought to be biased. At least that is the claim of the critics of using the clinician as cost-​containment  agent. Finally, the gatekeeper role will require making choices between competing ethical principles and theories. There is increasing evidence that various professional groups have predictable preferences for various ethical principles. Physicians, having historically been consequentialists, tend to prefer the consequentialist

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principles. When they are forced to make resource allocation decisions, they give special priority to social utility over justice. Other professions may have other orientations. There is some evidence, for instance, that clergy and lawyers tend to emphasize duty-​based ethical principles. They are likely to give more weight to justice. The choice of ethical principles, clearly, is not based on any medical expertise. Clinicians simply have no basis for making choices among competing medical goods, between medical goods and competing goods from outside medicine, or among competing ethical principles. Even the clinician with the most noble intentions can be expected to make these trade-​offs in an atypical fashion. Problems in Principle with Abandoning the Patient-​Centered Ethic There is a second objection to using the clinician as a cost-​containment agent. Traditionally, the clinician role has been one of being an advocate for the patient. Traditionally, the role of the clinician was Hippocratic and paternalistic. As that ethic was replaced with a more duty-​based respect for persons ethic, the clinician’s role still remained patient-​centered. The clinician would now serve the rights as well as the welfare of patients, but the patient was still the focus. Should clinicians also take responsibility for social ethical issues such as resource allocation? Do we really want to ask clinicians to abandon their role of patient advocates? Especially if it can be shown that they might make the trade-​offs incorrectly in the first place, would it not be better to keep the clinician in the patient advocate role? Asking the clinician to take on resource allocation tasks is in effect asking him or her to remove the Hippocratic Oath from the waiting room wall and replace it with a sign that reads: Warning all ye who enter here. I will generally serve your interests, but in the case of marginally beneficial expensive care I will abandon you in order to serve society as their cost-​containment agent.

An Exemption from Social Ethics for Clinicians The alternative is to give the clinician an exemption from social ethics, at least for the typical case. (Clinicians may still face choices that must include social ethical principles in special situations and when they realize that two or more of their patients are competing for the clinician’s attention.) This will still not mean a retreat to the Hippocratic ethic. It could still require objective assessment of medical effects. It could still require respect for autonomy and rights of patients. But it would exempt the physician from having to decide to abandon the patient at the margin, freeing him or her to remain loyal as an advocate for the patient. It would raise the clinician to the same high moral calling of the defense attorney,

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who is obliged ethically to remain loyal to the client even if the attorney believes the client is guilty. In law, the system relies on other actors—​prosecutors and judges and jury members—​to see that the system as a whole is fair.The corollary to exempting the physician (and other bedside clinicians) from social ethical responsibilities is that also in medicine someone else must take on this responsibility. If it is correct that not all desired and beneficial health services can be funded through basic health insurance programs—​that some will be so minimally beneficial and so expensive that other services have moral priority—​then society as a whole through the planning of the limits on its insurance coverage and through its delegated representatives will have to decide which services are morally of such low priority that they cannot be funded. Someone must take on the onerous moral responsibility of incorporating social ethical principles into healthcare programs. If the clinician can be expected to do the job in the wrong way and perhaps should have a special moral duty of serving the patient that is incompatible with taking on the duties of social ethical resource allocation, then the members of the society will have to find others to take on this responsibility. This task may fall to government officials, insurance company employees, hospital administrators, or the patients themselves, but someone will have to decide to place limits on what health insurance will cover.

520

Health Insurance The Affordable Care Act of 2010 In March 2010, the U.S. government made a historic decision to expand greatly the citizen’s right of access to affordable health insurance. In response to decades of debate about universal access to healthcare, it passed the Patient Protection and Affordability Act of 2010 (U.S. House of Representatives, 2010). As of 2019 it has survived many legal and political challenges. The legislation provides access to insurance for many more (but not all) citizens and legal residents. Among the most important provisions of this complex law, health insurance exchanges have been created to permit uninsured and self-​employed people to purchase insurance and permit small businesses to get insurance for their employees at competitive prices. Low-​income people receive subsidies for purchasing their insurance. Medicare payroll taxes are expanded for high-​income earners and a tax is added on the most expensive plans. Medicare recipients are provided expanded drug coverage. Medicaid is expanded to cover those up to 133 percent of the poverty level for states opting for such coverage. Insurance companies are no longer able to exclude people with pre-​existing conditions. Children are allowed to stay on their parents’ plan until age 26. Meanwhile, employers with more than 50 employees have to provide health insurance or, if a worker receives a federal subsidy to buy insurance, the employer has to pay a $2000 fee per worker.

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Ethical Issues The legislation is designed to increase greatly the number of people insured while making people pay their fair share of the costs.The ethical controversy starts in the disputes about what counts as one’s fair share (Annas, 2010; Brody, 2010; Murray, 2010). The private free market in insurance would be one in which insurers can exclude those who are ill or predictably will have high expected health costs, and young, healthy people with very low healthcare costs would either be charged very low amounts for their insurance or opt out entirely from insurance, posing serious issues. Those born with serious, expensive genetic illness would never be able to pay for their insurance at market rates and the healthy would be uninsured or pay very small amounts.

The Right to Healthcare This raises the moral issue of whether all humans can, in some sense, be said to have a “right” to healthcare. Certainly, they cannot have a right to all the healthcare they could possibly desire. This would include luxury services (cosmetic surgery) and procedures so expensive that the system could not survive. Likewise, it seems they could not have a right to services not proven effective or at least to services demonstrated not to accomplish the outcome they seek (gold spikes for cancer). The issue is whether humans have any basic right to obtain certain healthcare services and, if so, who has the correlative obligation to provide them.The services would have to meet criteria that are related to the ability of a society to provide resources and would surely be limited to a core of services that meet criteria of effectiveness and cost-​effectiveness. Some would argue against a right to even these basic services on the grounds that society simply has no such responsibility (Sade, 1971). Others, however, offer at least three grounds upon which everyone would have a right to such services and that a society has an obligation to provide them. (1)  Healthcare and Society’s Interest First, at least some healthcare, including some basic health services, may be in the interests of the members of society. Treatment of infectious diseases may benefit others as well as the patient. Not only will society save money; the health of others may require that infectious diseases be treated to avoid illness and death of others. Other services may benefit society in the long run by reducing social costs and eliminating the need for more complex medical services. It may simply be good, self-​interested action to provide these services to everyone. (2)  Healthcare as a Social Good Second, some may view healthcare as a “social good” that has been made possible by society and that therefore everyone has a right of access. The knowledge

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that makes medicine possible is produced socially. Public funds and private charities generate knowledge in such a way that it would be impossible to say that only those who choose to have insurance have a right to them. Everyone who pays taxes or otherwise contributes to the functioning of social institutions is in some sense partly responsible for the production of medical knowledge. Likewise, physicians and other healthcare professionals receive education that, even in private schools, is heavily subsidized by the government and charities. No physician can claim he or she created the skills of the professional without public support. If members of the society are part of the creation of medical knowledge, they have some right to access to the benefits it produces. (3)  Healthcare as a Matter of Justice A third ground on which people might be said to have a right to a basic level of healthcare services is more fundamental. The principle of justice, interpreted as most modern commentators would interpret it, requires that social practices be arranged so as to benefit everyone and especially the worst off among us. Thus, according to advocates for social justice, a basic social institution such as healthcare that limited its benefits to those who can afford to pay will have failed to respond to a fundamental moral claim of the members of the society least able to protect themselves. That is probably the fundamental moral basis for the overwhelming majority of more developed countries and many less developed ones committing to some form of near-​universal access to basic healthcare. Albeit limited by the resources available to the society, almost all societies provide that access.

Mandatory Coverage The single most controversial element of the Affordable Care Act has been the requirement that almost everyone have insurance or pay a penalty. For individuals the charge is less than the cost of insurance ($695), but this offends some with libertarian inclinations. For employers the risk is a fee if employees avail themselves of the subsidy to buy insurance they need because of the absence of the employer’s coverage. The principle of autonomy, some would say, is violated by this quasi-​mandatory participation. As of this writing, these fees are eliminated beginning in 2019. Those who reject mandatory participation need to face the fact that many other forms of social insurance are mandatory in American society:  Everyone is taxed to provide “mandatory” fire protection; everyone with an automobile is required to buy insurance. Other social goods such as education, the armed forces, public transportation, and the social security system include mandatory participation in funding. Even those who have moral objections (say to the military) must pay their share of taxes.To the extent that healthcare is a social good like highways and fire protection, it is argued that everyone must pay a fair share in order for the society to function.

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Even if healthcare is not social in these ways, as a practical matter it would be very difficult for society to restrict access to those who have proper insurance. Consider someone picked up unconscious on the street by emergency medical personnel. If insurance is optional and only those with insurance or ability to pay get hospital services, it would be almost impossible for emergency medical technicians (EMTs) and emergency room (ER) personnel to know whom to treat. As a practical matter, society should have a rule that everyone gets treated and should pay their fair share for such services. Likewise, children and mentally incapable adults should receive basic medical services. In fact, the law requires that parents provide such services and pay appropriately for them. Without mandatory coverage (or some sort of bond to cover costs), those incapable to decide about their own care could not get treatments that the law has determined they deserve. As a practical matter, mentally incapable persons must be covered, and society needs to make arrangements to cover those capable to choose to reject insurance, at least for infectious diseases, emergency services, and services needed to keep people healthy enough to fulfill their duties to family members and others upon whom they are dependent and their duties as citizens.

The Multiple Lists Problem This raises a final problem with universal or nearly universal health insurance, what can be called the multiple lists problem. It seems clear that, if there is to be near-​ universal coverage, it has to be limited to some list of covered services. Luxury services, very expensive services that produce only marginal benefits, and experimental services surely will not be included in the basic tier. Many assume that this means there should be a standard list of “medically necessary” services to which everyone should be entitled. The problem with that is that no medical service is “medically necessary” if one is willing to bear the consequences of omitting it. Moreover, different medical services are considered critical to different people. For some, abortion or aggressive attempts at life preservation are crucial. For others these interventions may be useless or even immoral. Less well understood is the fact that literally every medical intervention decision requires an evaluation of whether the expected benefits are worth the burdens, side-​effects, and other costs. The necessity of an intervention is a function of how much the expected outcome is valued in comparison with the negatives it brings. Thus, different people would choose quite different lists of services as part of the “basic tier” of insured health services. If everyone gets the same standard package of services, the ones who design the list will benefit most; those culturally most distant from the designers (those who have different beliefs and values) will get less. They may not see any value in a covered service and therefore reject it even if it is fully covered, or they may see only slight value, but be forced into a position in which their insurance premiums are used for relatively unattractive

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services while those they really want (such as alternative medicine) are excluded. Moreover, the people who are in a position to design levels of coverage will come from a socioeconomic position that will not match that of many people who need coverage, and these different positions can lead to diverging health priorities. An evidence-​based and thoughtful coverage plan should take into account social determinants of health10 as well, but expanded reimbursements might not correlate with increased access when there is a dearth of healthcare resources in certain areas (which goes to show how very complex these problems are in establishing a just healthcare system). This suggests that any single package of health services connected to universal or near-​universal insurance will benefit some more than others. If everyone must pay but some are expected to get more benefits than others because of their unique values, something is unfair. The alternative would be to let groups supporting a range of alternative values design insurance packages that could compete in the marketplace. Each would have to cover certain services (ER treatments, infectious disease treatments, and care for children and other mentally incapable individuals). Each would also have to cover conditions for which risk is well known in advance in order to avoid those who know they are low risk choosing plans without that item being covered, thus leaving those known to be a risk as the only ones choosing the packages with the covered service. (Consider that only young black people and others of child-​bearing age with sickle-​cell trait would be the ones selecting insurance plans that cover sickle-​cell disease because others would know they never would need that coverage.) It may be that, even with universal or near-​universal insurance such as is promised with the Affordable Health Care Act, multiple plans will have to be offered, each with its own unique bundle of healthcare services provided, and that all of those offered would cover conditions requiring treatment to protect the public as well as those to which the risk is well-​known and predictable in advance. Giving everyone an entitlement to a fixed dollar premium with which they could shop from a list of plans with different coverages might be the only fair way to make sure that all cultural tastes are served. Unfortunately, continuing to link health insurance primarily to employment means that, at most, a small number of choices will be available. It is very early in the U.S. development of nearly universal health insurance (even if systems in other countries are more mature). There will surely be many ethical controversies as well as practical problems as the plan is rolled out over the next decade.

Organ Transplantation A third area in which bioethics is necessarily social is organ transplantation. (For more detailed discussions, see Task Force on Organ Transplantation, 1986; Shelton and Balint, 2001; Swazey and Fox, 2009; World Health Organization, 2010;Veatch

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and Ross, 2015.) The ethics of transplantation generally involves three issues: the fundamental morality of transplanting body parts, the ethics of organ procurement, and the ethics of allocation. All of these involve social moral controversies.

Is Performing Transplants “Playing God”? The first moral issue is whether transplanting human body parts from one being to another is tampering with the human’s basic nature in ways that go beyond what is acceptable human conduct.The controversy is exacerbated when the organs come from nonhuman animals. Some people consider organ transplant not only psychologically repulsive, but morally and religiously questionable as well. Nevertheless, the major Western religious traditions all are supportive of organ transplant, even transplants involving the heart—​the traditional, romantic “seat of the soul.” The problem of whether modern medical interventions go beyond what is morally acceptable for humans is the subject of Chapters 10 and 11.

Procurement of Organs Procuring organs for transplant has been a more mundane, but no less controversial, issue. Procurement raises even more directly the question of the relation of the individual to society. Some commentators have held that human organs of the deceased cannot possibly be of any use to the dead person and should automatically become the property of the state to be used for good social purposes, including not only transplant, but research, education, and other medical therapies. Some countries have now legislated that organs can be taken without expressed consent provided the individual or family have not registered an explicit objection (an opt-​out model). This has been called “routine salvaging” (Dukeminier and Sanders, 1968). It is the law in some Latin, Scandinavian, and Asian countries. The United States, Australia, Japan, and several other countries, however, have remained committed to the opt-​in model of donation of organs.11 They rely on the belief that the individual has rights against the state, and these rights extend to control of the corpse. Organs may, therefore, be procured only with the expressed consent of the person from which they are taken (or that person’s representative). This view reflects the individualism of liberal Western political philosophy. The principles of informed consent, and the related respect-​for-​persons principles of fidelity to commitments and truth telling, control the procurement of organs in these countries. Because there is a chronic, severe shortage of transplantable organs from suitable deceased donors, more and more organs are being procured from living donors. Although in theory unpaired, life-​preserving organs such as the heart or liver could be procured, such procurement would amount to killing the donor and is not seriously contemplated by most people. Procuring a single kidney, however, is feasible and increasingly common. Also, a part of a liver (a liver lobe)

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can be procured and transplanted. Since liver tissue regenerates, the long-​term consequences are normally manageable. Living donors of kidneys and liver lobes are almost always close family members or friends capable of consenting to the procurement. Occasionally, an altruistic person volunteers to donate to a stranger, in which case the organ is usually allocated using the algorithm for distributing organs to those on the waiting list for deceased donor organs. These donors (sometimes called “non-​directed” donors) must be screened for mental and physical issues and, at least in the United States, by law no money or other valuable consideration can be exchanged. Ethical controversy has arisen over whether unrelated donors (either friends or strangers) are morally acceptable and, more recently, over whether donor–​recipient pairs could exchange organs to make the system more efficient. For example, because kidneys must be blood-​compatible, people of O-​blood type can only receive organs from an O-​blood organ donor. A family member with O-​blood could give a kidney to a loved one with some other blood type, but those who are not O-​blood type normally cannot give a kidney to an O-​blood recipient. One option would be for the non-​O family member to give a kidney to the deceased donor waiting list to be allocated according to the normal protocol in exchange for which the next suitable O-​kidney from a deceased donor could go to the person in the family of the living donor. This adds a kidney and shortens the overall waiting time of those on the list because two people (one extra person) are removed from the list. The problem, however, is that the people of O-​blood type higher on the list than the one whose family contributed the kidney are passed over and actually have the waiting time increased. Since they were the hardest to transplant, they already had the longest waiting times.This means that the worst off (the ones with the predictably longest wait times) do even worse, even though the group on the wait list does better on average. A defender of maximizing social utility finds this outcome acceptable, but the defender of the moral principle of justice who interprets the principle as requiring fairness will have moral objection (Zenios et al., 2001). The problem is even more complicated in the case of swaps or exchanges involving two or more living donors (Montgomery et al., 2006). A person of O-​ blood type willing to donate to a stranger could, instead of donating to the wait list, provide that kidney to someone with O-​blood who has a family member or friend willing to donate, but who has an incompatible blood type, say, someone of type A.  The A-​blood kidney could then be given to a recipient with A-​or AB-​blood who has a donor available who is incompatible for reasons other than blood type (e.g., a size difference) thus creating a “chain” of donations. If that donor happened to be of O-​blood, the chain could start all over. Otherwise the final kidney in the chain could go to someone on the waiting list who has no available donor. Two ethical problems arise. First, some people find the exchange inherently offensive because it means receiving a stranger’s kidney rather than a family

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member’s. Presumably, such people would have the right to refuse to participate, waiting instead for a deceased donor even though it might take much longer. Second, without the exchange, the original donor’s O-​blood kidney would have gone to the waiting list, meeting the need of the hardest-​to-​treat group of patients. With an exchange such as the chain described, the final kidney will likely not be usable by the hardest-​to-​treat group on the waiting list.Thus, the fairness problem re-​emerges.

Organ Allocation Some of the most dramatic and contested social ethical issues arise today over the ethics of allocating scarce organs for transplant. In late 2018 there were more than 114,000 people waiting for organs in the United States. The supply is inevitably scarce and will be at least until artificial organs or animal organ sources become more routine. When there is an inevitably short supply of a resource, the social ethics of resource allocation becomes crucial. What has been said earlier in this chapter made clear that, if a libertarian, free-​ market  allocation is unacceptable, two principles will govern allocation: social utility and justice.

CASE 27 ALLOCATING LIVERS: LOCAL VERSUS REGIONAL PRIORITY The liver is an organ crucial for life. People with severe liver disease need a transplant to survive. There is no treatment alternative as there is with kidneys. About 13,500 people in the United States are on the waiting list for livers. In 2017, over 1200 people died waiting for a liver. Recently, a national public policy controversy over the allocation of livers has posed a stark choice. When a liver is procured from a recently deceased person, that liver can be used locally or can be transported to a more distant transplant center. Serious disagreement exists over whether livers should be kept locally or moved to patients who are further away but with more urgent need. For each patient needing a liver transplant, a statistic called a MELD (Model for End-​stage Liver Disease) score can be calculated. It predicts patient death within three months and can be used to determine which patients on the waiting list have the greatest urgency for a transplant. After excluding those who are already too ill to be listed for a transplant, livers are generally given to the person with the most urgent need. The controversy is over whether this system should first be applied only to the patients living near to where the organ was procured or should go to patients with higher MELD scores nationally or regionally.

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The federal government’s Department of Health and Human Services was concerned that some local areas had more very sick candidates for liver transplant than others. This meant that the current policy of using livers first locally led to relatively well-​off patients getting livers when much sicker patients in other areas did not get transplanted. The concern was that equally sick patients were getting treated differently in different areas. The government issued a rule requiring the United Network for Organ Sharing (UNOS) to develop a policy that would treat patients more fairly (U.S. Department of Health and Human Services, 1999). The UNOS—​the national body charged with obtaining and allocating organs—​favored keeping livers locally. Defenders of a local priority pointed to several factors including the advantage of a shorter time before transplant so that organs would deteriorate less, a concern that transporting organs to treat sicker patients might produce worse outcomes, and a belief that people would be more willing to donate organs if they were used locally. The ethical issue was whether fairness requires transporting organs to those areas with the sickest patients or the added advantages of using organs locally justifies the unequal access.

Social Utility An ethic of allocation driven solely by the principle of maximizing social utility would, in this case, favor a priority for local allocation of livers.At least three benefits support that conclusion: getting organs in better condition, treating patients with predicted better outcomes, and possibly getting more organs. Everyone would agree that it makes no sense to transport organs such a great distance that they become useless. Thus, most people oppose a national sharing of livers. The inequalities of access can be addressed adequately if livers are shared within each of the 15 regions of the country created by the UNOS. But regional sharing poses at least some risk of deterioration of the organs and good social utilitarians—​those committed to maximizing the aggregate social benefit—​would insist on the shortest possible time between procurement and transplant.They would also insist that the livers go to the patients who can get the most benefit. Often in medicine those might be the sickest patients, but in the case of liver transplant, the sickest—​the patients closest to death based on the MELD scores—​would not do as well as healthier patients. Finally, they would insist on using organs in such a way that people were most inclined to donate. If a local use would encourage donation (a point that some have doubted), then they would opt for local use even if it meant that the most needy patients did not get the organs. Many at UNOS, including many of the physicians in the UNOS leadership, favor utility maximizing; that is, using organs in such a way that the most possible good is done, even if that meant unequal access (Heiney, 2000).

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Justice Those committed to the importance of the principle of justice in allocating scarce resources—​ including many of the nonphysicians involved in organ allocation—​are not automatically swayed by the data showing that more years of graft survival could result from local allocation. They claim that, especially with a public program such as organ transplantation, all persons should have an equal right to the benefits of the program regardless of their geographical location. For kidney allocation, they tend to favor adjustments in the organ allocation formula to provide more equal access by adding weight to factors such as time on the waiting list, blood type, and a marker for previous exposure to foreign tissue that decreases the chance of finding a suitable organ. For livers they favor allocation to those most likely to die without transplant even if these patients may not do as well.

Balancing Social Utility and Justice The resolution of this dispute will depend on how we should resolve conflict among competing ethical principles, a topic discussed in Chapter 4. The tensions between the public officials at the Department of Health and Human Services—​ the ones concerned about justice or fairness—​and the UNOS officials—​the ones concerned about maximizing social utility—​reflect the underlying dispute about two very different ethical approaches. Not being able to resolve the question of which principle deserves priority, they reached a compromise. They negotiated a policy of giving some weight in the allocation to considerations of medical utility (such as a priority in allocating livers to patients with acute fulminating liver failure) and some weight to considerations of justice, measured mainly by MELD scores. Likewise, in allocating kidneys, some weight is given to predictors of good outcome (HLA match, patient age, and sensitivity to foreign tissue) and some is given to fairness and more equal access (expressed in terms of time on the waiting list).The UNOS Ethics Committee is formally committed to the importance of both ethical principles (UNOS, 2010).

Research Involving Human Subjects A fourth area in which bioethics inevitably becomes social is research involving human subjects (Brody, 1998; Katz, 1972; Lederer, 2009; Levine, 1988; Veatch, 1987). It is striking that a physician committed whole-​heartedly to the Hippocratic ethic of doing whatever will benefit the patient is logically committed to the view that all research involving human subjects—​that is, all interventions for the purpose of producing generalizable knowledge rather than for the benefit of the patient—​is unethical.

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Distinguishing Research and Innovative Therapy Here it is important to distinguish between true research and what is sometimes called innovative therapy. Throughout history when a patient has had a condition that did not respond to standard treatments, physicians have felt compelled to try something that can be called innovative therapy. Through most of history, new treatments were attempted without any systematic scientific plan or intention. The goal was to try to help the patient. Risks were considered acceptable given the bleak alternatives. Medical research is a much more recent phenomenon, dating from only the nineteenth century. Its goal is not to benefit the patient, but to advance scientific knowledge. Research that involves randomization between two different treatments is ideal for isolating the critical variable being studied. It is morally justified only when researchers honestly do not know which of two treatments is preferable—​when they are at or near what is called the indifference point or equipoise. In those situations, placing a patient in the randomized design cannot be to the patient’s advantage compared to simply receiving the standard treatment since there is no basis at the inception of the study for believing anything other than the standard treatment is superior. Medical research involving human subjects must meet  all the ethical criteria discussed in earlier chapters of this book. A potential subject must give an adequately informed consent meeting the standards discussed in Chapter 7. The subject’s autonomy must be respected. If private information is collected about the subject, the rules of confidentiality grounded in the principle of fidelity must be followed. The principle of veracity must be followed as well. Hence, psychological studies built on the intentional deception of the subject have long been controversial. Based on traditional individually focused principles of beneficence and nonmaleficence, risks to the subject must be minimized. But here medical research departs from traditional clinical medicine. The obvious way to protect subjects from harm from procedures that cannot be known in advance to be beneficial to them is to avoid doing the research. If researchers have no reason in advance to believe the experimental treatment is better than the standard treatment, the subject would always be protected by simply not doing the study. This is true even more obviously in the case of research on normal, healthy subjects. If medical research is justified at all, it must be by appeal to some ethical principle other than maximizing benefit to the individual patient or subject.

Social Ethics for Research Involving Human Subjects Social Utility An examination of the standard guidelines for research involving human subjects will always reveal that the first, minimal condition for justifying studies on humans is that they are believed to offer hope of producing knowledge valuable to the society that cannot be obtained in any other manner. Thus, the study must be

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supported by the principle of social utility. Although it may justify innovative therapy, Hippocratic utility—​patient-​centered concern about benefits and harms—​will not do to justify research. It is generalizable, scientific knowledge that is being pursued, not patient welfare. At the same time, terrible abuses of human subjects have occurred in the name of promoting social utility. We have now learned that these occurred not only in the Nazi concentration camps, but also in other societies including the United States (Moreno, 2000).

Respect for Persons The Nuremberg Code makes clear that social utility is not the only criterion for justifying medical research involving human subjects. As we saw in Chapter 7, it gives a strong commitment to self-​determination or what is now in ethical theory normally called autonomy. Since the time of the writing of the Nuremberg Code, the most important document summarizing the ethics of human subjects research is the Belmont Report of the U.S. National Commission for the Protection of Human Subjects of Biomedical and Behavior Research (1978). It is built on three ethical principles: beneficence (which it treats as if it were social utility—​including duties to avoid harm as well as benefit), respect for persons, and justice. From respect for persons it builds a consent doctrine and could as well have developed commitment to confidentiality and honesty. Respect for persons in research also requires that there be a right of exit (that is, participants can leave the study freely and without fear of retribution or retaliation). The Belmont Report states that this principle is not merely a matter of respecting autonomy; it also involves protecting persons with diminished autonomy. Prisoners, for example, can be particularly vulnerable to undue influence and coercion, even with intact cognitive faculties. Extra protective measures could thus be called for whenever prisoners are included in research. For similar reasons, compensation strategies to recruit research participants have to be carefully scrutinized; the amount should not be so extravagant that would-​be participants feel like they cannot freely say “no” to taking part in the study.

Justice From the principle of justice, the Belmont Report recognizes a duty to ensure fairness in recruiting subjects. No study can recruit subjects solely from wards serving low-​income patients or from prisons, psychiatric hospitals, or other institutions that would produce inequity in subject selection (unless the nature of the study requires that only these subjects participate). More recently, the principle of justice has been understood to require adequate recruitment of subjects to apply the findings across racial and gender differences. Other advocates of the principle of justice have claimed that the requirements of justice must go further.

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Federal guidelines for human subject research have classified some groups as vulnerable, which prompts researchers and reviewers to ensure additional protections are in place as needed, and there has been a general presumption against including vulnerable persons in research. These protections encompass a number of ethical concerns, including respect for persons and nonmaleficence, but they also reflect a commitment to just treatment of research participants who might be particularly susceptible to harm or unable to advocate for themselves. This protective stance has also been challenged as being unjust in those cases where entire groups of people, such as pregnant women, are systematically excluded from research from which they could potentially benefit (Lyerly et al., 2008).12 It is also controversial when researchers from a wealthy country plan on conducting research in an impoverished area of the world without access to scientific or medical advancements that could result from the research. A central question is: Why are the researchers going to this population to carry out their research? Other countries might not have as many regulatory protections or oversight, and informed consent barriers can vary substantially. The confidentiality protections might be different for a relatively small tribe, for example, where normal deidentification methods could prove inadequate for protecting participants’ identity. Intentionally or not, researchers could end up exploiting participants—​that is, taking unfair advantage of participants’ vulnerability (Carse & Little, 2008). Consider the following case, where questions of just research design comes to the fore:

CASE 28 JUSTICE IN DESIGN OF RESEARCH Some years ago, researchers at a major medical center wanted to test several chemotherapeutic agents for toxicity and make an initial estimate of the effectiveness of the combination of drugs. One of the agents, methotrexate, can have serious side-​effects, but the protocol called for giving it in the high dose followed the next day with a dose of leucovorin, which would neutralize the methotrexate. The methotrexate would be administered every 21 days at the hospital, followed by the leucovorin for three days. The controversy was over whether the leucovorin could be prescribed for the subjects to take at home, which would pose the risk of patients accidentally or intentionally omitting a dose—​a mistake that could prove fatal. Those who favored administering the leucovorin in the hospital argued that it would be safer for the patients if they were hospitalized for three days out of every 21, while they take their medication. They pointed out it would also provide for more carefully controlled science. Researchers would maintain better control over the amount of medication and timing of its administration. They also were concerned that researchers not inadvertently be a party to a suicide by means of refusing to take the leucovorin.

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On the other hand, defenders of permitting the leucovorin to be taken at home emphasized the burden of making sick patients come to the hospital for three days out of every 21 of their remaining time. Some suggested that because they were particularly sick, they had a special claim to have the research design as convenient and pleasant for them as possible. As long as they knew the risks of taking the medication at home, they should be permitted to do so or given a choice whether to come to the hospital. It seemed that the safest course was also the best science, but that advantage would come at what some subjects would take as an additional burden of an already very difficult life.13

If the only ethical principle guiding this study were social utility, it seems obvious which research design should be chosen. Hospitalizing the patients for three days out of every 21 ensures better control and closer monitoring of the subjects. Moreover, it seems to provide better protection for patients against the risk that they will not take the rescue agent. If the alternative is to send a professional staff person from the study to the patient’s home to administer the leucovorin, hospital administration might even be cheaper. From a utilitarian perspective, hospitalization seems the clear choice. But these are very sick patients. Asking them to spend three out of 21 of the few days they have remaining seems a considerable burden for them. Many patients might legitimately prefer to stay at home and take their leucovorin without having to be in the hospital or under the watch of the researchers. If these subjects are among the worst off—​as they well might be—​then those who subscribe to a needs-​based theory of justice could conclude that they have a special claim to have their interests served even if doing so does not maximize social utility. Especially, if these advocates of the principle of justice also minimized concern about the risk of the patients committing suicide and held a strong commitment to self-​determination, they may well conclude that the morally correct protocol was at-​home administration. Although at-​home administration would sacrifice social utility, it would promote the well-​being of these particularly needy persons. The choice of the proper research design will depend on how we resolve the conflict between social utility and justice, a subject we addressed in Chapter 4.

Conclusion A social ethics for healthcare is a special concern of contemporary bioethics. Ancient Hippocratic medical ethics lacked a social ethics, in fact, it often implied that concern for the welfare of third parties was immoral. Since the time of an awareness of a public aspect to health and especially since the time that health insurance made us aware of competition for scarce medical resources, a social ethics is unavoidable. We have seen that it also unavoidable in the era of transplant medicine and human subjects research.

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Key Concepts Coercion When a person, institution, or the state tries to force a desired decision from someone under threat of negative consequence, so the individual believes he or she is not fully free to choose otherwise. Negative consequences could include ostracism or social abandonment, financial devastation, or prison, for example. Exploitation Taking unfair advantage of another person’s vulnerability, which likely violates duties of justice and respect for persons. Indifference Point In research involving randomized clinical trials, the state in which researchers honestly do not have reason to believe that one treatment is preferable to the others. Randomized clinical trials are normally believed to be ethical only if investigators are at the indifference point (sometimes also called clinical equipoise). Innovative Therapy Therapy sometimes used by clinicians and lay people in cases in which standard therapy is believed to be ineffective. The purpose is to try whatever is plausible for the benefit of the patient, not the production of generalizable, scientific knowledge; cf. Research. Justice The principle that an action is morally right insofar as it treats people in similar situations equally. Different theories of justice provide different bases for allocating resources justly. For example, egalitarian justice would distribute healthcare on the basis of need; cf. Social Utility. Objective Hippocratic Utility The principle that the physician should benefit the patient and protect the patient from harm as the benefits and harms are determined by standards that are objective rather than based on the physician’s personal judgments; cf. Subjective Hippocratic Utility. Opt-​in Model of Transplantation System where viable organs are procured only with the expressed consent of the individual prior to death (or with the consent of a legally authorized representative). Opt-​out Model of Transplantation System where viable organs are procured from deceased individuals as a default, except when the individual has documented his or her objection prior to death (or when a legally authorized representative objects on the deceased’s behalf, depending on legal allowances). Research The systematic pursuit of scientific knowledge for the purpose of advancing science. In medicine, research interventions using human subjects may turn out to benefit the subject, but that is not the purpose, and in ethically acceptable research using human subjects the benefit from the research interventions cannot be known in advance.

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Social Utility The principle that an action or rule is morally right insofar as it produces as much or more net good consequences as any alternative, taking into account the benefits and harms for all parties affected. Subjective Hippocratic Utility The principle that the physician should benefit the patient and protect the patient from harm as the benefits and harms are determined by the physician; cf. Objective Hippocratic Utility. Utilitarianism The normative ethical theory that is committed to the view that the correct action or rule is the one that produces the best consequences considering all parties affected; often limited to those forms of consequential ethics that envision calculations of anticipated benefits and harms by subtracting expected amount and probability of harm from expected amount and probability of benefit for each affected party and then summing the net benefits for all those affected.

Bibliography American Medical Association. “Principles of Medical Ethics of the American Medical Association.” Journal of the American Medical Association 164 (1957): 1119–​1120. American Medical Association. Current Opinions of the Judicial Council of the American Medical Association. Chicago: American Medical Association, 1981. Barnett, Jessica C., and Edward R. Berchick. “Health Insurance Coverage in the United States: 2016.” United States Census Bureau Report Number P60-260, September 17, 2017. www.census.gov/​library/​publications/​2017/​demo/​p60-​260.html, accessed August 18, 2019. Bump, Philip. “3.2 Million More People Were Uninsured at the End of 2017 than at the End of 2016.” Washington Post, January 16, 2018. www.washingtonpost.com/​news/​ politics/​wp/​2018/​01/​16/​3-​2-​million-​more-​people-​were-​uninsured-​at-​the-​end-​ of-​2017-​than-​at-​the-​end-​of-​2016/​?utm_​term=.96ad18895ad1, accessed August 18, 2019. DeNavas-​Walt, Carmen, Bernadette D. Proctor, and Jessica C. Smith. U.S. Census Bureau, Current Population Reports, P60–​238, Income, Poverty, and Health Insurance Coverage in the United States: 2009. Washington, DC: U.S. Government Printing Office, 2010. Sawyer, Bradley, and Cynthia Cox. “How Does Health Spending in the U.S. Compare to Other Countries?” Peterson-​Kaiser Health System Tracker, February 13, 2008. www. healthsystemtracker.org/​chart-​collection/​health-​spending-​u-​s-​compare-​countries/​ #item-​relative-​size-​wealth-​u-​s-​spends-​disproportionate-​amount-​health, accessed August 18, 2019. Veatch, Robert M. “Case Study:  Risk Taking in Cancer Chemotherapy.” IRB, August–​ September 1979: 4–​6.

Social Ethical Theory Bentham, Jeremy. An Introduction to the Principles of Morals and Legislation, ed. J.H. Burns, and H.L.A. Hart, intro. F. Rosen. New York: Oxford University Press, 1996 [1789].

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Engelhardt, H. Tristram. The Foundations of Bioethics, 2nd ed. New York: Oxford University Press, 1996. Lebacqz, Karen. Six Theories of Justice:  Perspectives from Philosophical and Theological Ethics. Minneapolis, MN: Augsburg, 1986. Mill, John Stuart. Utilitarianism. Indianapolis, IN: Hackett, 2001 [1863]. Rawls, John. A Theory of Justice. Cambridge, MA: Harvard University Press, 1971. Veatch, Robert M. The Foundations of Justice: Why the Retarded and the Rest of Us Have Claims to Equality. New York: Oxford University Press, 1986b.

Allocation of Scarce Medical Resources American Medical Association, Council on Ethical and Judicial Affairs. “Ethical Considerations in the Allocation of Organs and Other Scarce Medical Resources Among Patients.” Archives of Internal Medicine 155, No. 1 (1995): 29–​40. Anderlik, Mary R. The Ethics of Managed Care:  A Pragmatic Approach. Bloomington, IN: Indiana University Press, 2001. Baker, Robert, and Martin Strosberg. “Triage and Equality:  An Historical Reassessment of Utilitarian Analyses of Triage.” Kennedy Institute of Ethics Journal 2 (1992): 103–​123. Daniels, Norman, and James E. Sabin. Setting Limits Fairly: Learning to Share Resources for Health, 2nd ed. Oxford and New York: Oxford University Press, 2008. Kaplan, R.M., and J.W. Bush. “Health-​Related Quality of Life Measurement for Evaluation Research and Policy Analysis.” Health Psychology 11 (1982): 61–​80. Menzel, Paul. “Allocation of Scarce Resources.” In The Blackwell Guide to Medical Ethics, ed. Rosamond Rhodes, Leslie P. Francis, and Anita Silvers. Malden, MA: Blackwell, 2007, pp. 305–​322. Neuhauser, Duncan, and Ann M. Lewicki. “What Do We Gain from the Sixth Stool Guaiac?” New England Journal of Medicine 293, No. 5 (1975): 226–​228. Newdick, Christopher. Who Should We Treat? Rights, Rationing, and Resources in the NHS, 2nd ed. Oxford and New York: Oxford University Press, 2005. Oregon Health Services Commission. Prioritization of Health Services:  A Report to the Governor and Legislature. Oregon: Oregon Health Services Commission, 1991. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Securing Access to Health Care, Vol. 1. Washington, DC: U.S. Government Printing Office, 1983. Strosberg, Martin A., Joshua M. Weiner, and Robert Baker, with I. Alan Fein. Rationing America’s Medical Care:  The Oregon Plan and Beyond. Washington, DC:  Brookings Institution, 1992. Ubel, Peter. Pricing Life:  Why It’s Time for Health Care Rationing. Cambridge, MA:  MIT Press, 2000. Veatch, Robert M. “Voluntary Risks to Health: The Ethical Issues.” Journal of the American Medical Association 243 (1980): 50–​55. Veatch, Robert M. “Autonomy’s Temporary Triumph.” The Hastings Center Report 14, No. 5 (1984): 38–​40. Veatch, Robert M. “DRGs and the Ethical Reallocation of Resources.” Hastings Center Report 16, No. 3 (1986a): 32–​40.

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Health Insurance Annas, George J. “The Real Pro-​life Stance—​Health Care Reform and Abortion Funding.” New England Journal of Medicine 362, No. 16 (2010): e56. Brody, Howard. “Medicine’s Ethical Responsibility for Health Care Reform—​the Top Five List.” New England Journal of Medicine 362, No. 4 (2010): 283–​285. Murray, Thomas H. “American Values and Health Care Reform.” New England Journal of Medicine 362, No. 4 (2010): 285–​287. Sade, Robert M. “Medical Care as a Right: A Refutation.” New England Journal of Medicine 285 (1971): 1288–​1292. U.S. House of Representatives. Compilation of Patient Protection And Affordable Care Act [As Amended Through May 1,  2010] Including Patient Protection and Affordable Care Act Health-​related Portions of the Health Care and Education Reconciliation Act of 2010. Washington, DC:  U.S. Government, 2010. Available at:  http://​housedocs.house.gov/​ energycommerce/​ppacacon.pdf, accessed August 18, 2019.

Organ Transplantation Dukeminier, Jesse, and David Sanders. “Organ Transplantation:  A Proposal for Routine Salvaging of Cadaver Organs.” New England Journal of Medicine 279 (1968): 413–​419. Heiney, Douglas A. Memorandum: Proposed Liver Allocation Policy Development Plan for Public Comment. Richmond,VA: UNOS, 2000. Montgomery, Robert A., Sommer E. Gentry, William H. Marks, Daniel S. Warren, Janet Hiller, Julie Houp, Andrea A. Zachary, J. Keith Melancon, Warren R. Maley, Hamid Rabb, Christopher Simpkins, and Dorry L. Segev.“Domino Paired Kidney Donation: A Strategy to Make Best Use of Live Non-​directed Donation.” Lancet 368, No. 9533 (2006): 419–​421. Moss, Alvin H., and Mark Siegler. “Should Alcoholics Compete Equally for Liver Transplantation?” Journal of the American Medical Association 265 (1991): 1295–​1298. Shelton, Wayne, and John Balint. The Ethics of Organ Transplantation. New  York: JAI, 2001. Swazey, Judith P., and Renée C. Fox. “Ethical Issues in Organ Transplantation in the United States.” In The Cambridge World History of Medical Ethics, ed. Robert B. Baker and Laurence B. McCullough. New  York:  Cambridge University Press, 2009, pp. 678–​683. Task Force on Organ Transplantation. Organ Transplantation:  Issues and Recommendations. Washington, DC: United States Department of Health and Human Services, 1986. UNOS. “Ethical Principles to be Considered in the Allocation of Human Organs” (Approved by the OPTN/​UNOS Board of Directors on June 22, 2010). U.S. Department of Health and Human Services, Health Resources and Services Administration. “Organ Procurement and Transplantation Network; Final Rule.” Federal Register 42, CFR Part 121 (1999): 5650–​5661. Veatch, Robert M., and Lainie F. Ross. Transplantation Ethics, 2nd ed. Washington, DC: Georgetown University Press, 2015. World Health Organization. WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation. Geneva: World Health Organization, 2010.

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Research Involving Human Subjects Brody, Baruch. The Ethics of Biomedical Research: An International Perspective. New York: Oxford University Press, 1998. Carse, Alisa L., and Margaret Olivia Little. “Exploitation and the Enterprise of Medical Research.” In Exploitation and Developing Countries:  The Ethics of Clinical Research, ed. Jennifer Hawkins and Ezekiel J. Emanuel. Princeton, NJ: Princeton University Press, 2008, pp. 206–​245. Katz, Jay. Experimentation with Human Beings. New York: Russell Sage Foundation, 1972. Lederer, Susan E. “The Ethics of Experimenting on Human Subjects.” In The Cambridge World History of Medical Ethics, ed. Robert B. Baker and Laurence B. McCullough. New York: Cambridge University Press, 2009, pp. 558–​565. Levine, Robert J. Ethics and Regulation of Clinical Research, 2nd ed. New Haven, CT: Yale University Press, 1988. Lyerly, Anne Drapkin, Margaret Olivia Little, and Ruth Faden. “The Second Wave: Toward Responsible Inclusion of Pregnant Women in Research.” International Journal of Feminist Approaches to Bioethics 1, No. 2 (2008): 5–​22. Moreno, Jonathan D. Undue Risk:  Secret State Experiments on Humans. New  York:  W. H. Freeman and Company, 2000. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Washington, DC: U.S. Government Printing Office, 1978. Price, David, ed. Organ and Tissue Transplantation. Aldershot, Hampshire and Burlington, VT: Ashgate, 2006. Veatch, Robert M. The Patient as Partner:  A Theory of Human-​ Experimentation Ethics. Bloomington, IN: Indiana University Press, 1987. Zenios, Stefanos A., E. Steve Woodle, and Lainie Friedman Ross. “Primum Non Nocere:  Avoiding Harm to Vulnerable Wait List Candidates in an Indirect Kidney Exchange.” Transplantation 72, No. 4 (2001): 648–​654.

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Hippocratic Oath I swear by Apollo Physician and Hygieia and Panaceia and all the gods and goddesses, making them my witnesses, that I fulfill according to my ability and judgment this oath and this covenant: To hold him who has taught me this art as equal to my parents and to live my life in partnership with him, and if he is in need of money to give him a share of mine, and to regard his offspring as equal to my brothers in male lineage and to teach them this art if they desire to learn it without fee and covenant; to give a share of precepts and oral instruction and all the other learning to my sons and to the sons of him who has instructed me and to pupils who have signed the covenant and have taken an oath according to the medical law, but to no one else. I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice. I will never give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art. I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are engaged in work. Whatever houses I may visit, I will come for the benefit of the sick, remaining free of all intentional injustice, of all mischief and in particular of sexual relations with both female and male persons, be they free or slaves. What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself holding such things shameful to be spoken about.

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If I fulfill this oath and do not violate it, may it be granted to me to enjoy life and art, being honored with fame among all men for all time to come; if I transgress it and swear falsely, may the opposite of all this be my lot.

Universal Declaration on Bioethics and Human Rights (2005) The General Conference proclaims the principles that follow and adopts the present Declaration.

General provisions Article 1: Scope 1. This Declaration addresses ethical issues related to medicine, life sciences and associated technologies as applied to human beings, taking into account their social, legal and environmental dimensions. 2. This Declaration is addressed to States. As appropriate and relevant, it also provides guidance to decisions or practices of individuals, groups, communities, institutions and corporations, public and private.

Article 2: Aims The aims of this Declaration are: to provide a universal framework of principles and procedures to guide States in the formulation of their legislation, policies or other instruments in the field of bioethics; to guide the actions of individuals, groups, communities, institutions and corporations, public and private; to promote respect for human dignity and protect human rights, by ensuring respect for the life of human beings, and fundamental freedoms, consistent with international human rights law; to recognize the importance of freedom of scientific research and the benefits derived from scientific and technological developments, while stressing the need for such research and developments to occur within the framework of ethical principles set out in this Declaration and to respect human dignity, human rights and fundamental freedoms; to foster multidisciplinary and pluralistic dialogue about bioethical issues between all stakeholders and within society as a whole; to promote equitable access to medical, scientific and technological developments as well as the greatest possible flow and the rapid sharing of knowledge concerning those developments and the sharing of benefits, with particular attention to the needs of developing countries; to safeguard and promote the interests of the present and future generations; to underline the importance of biodiversity and its conservation as a common concern of humankind.

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Principles Within the scope of this Declaration, in decisions or practices taken or carried out by those to whom it is addressed, the following principles are to be respected.

Article 3: Human Dignity and Human Rights 1. Human dignity, human rights and fundamental freedoms are to be fully respected. 2. The interests and welfare of the individual should have priority over the sole interest of science or society.

Article 4: Benefit and Harm In applying and advancing scientific knowledge, medical practice and associated technologies, direct and indirect benefits to patients, research participants and other affected individuals should be maximized and any possible harm to such individuals should be minimized.

Article 5: Autonomy and Individual Responsibility The autonomy of persons to make decisions, while taking responsibility for those decisions and respecting the autonomy of others, is to be respected. For persons who are not capable of exercising autonomy, special measures are to be taken to protect their rights and interests.

Article 6: Consent 1. Any preventive, diagnostic and therapeutic medical intervention is only to be carried out with the prior, free and informed consent of the person concerned, based on adequate information. The consent should, where appropriate, be express and may be withdrawn by the person concerned at any time and for any reason without disadvantage or prejudice. 2. Scientific research should only be carried out with the prior, free, express and informed consent of the person concerned. The information should be adequate, provided in a comprehensible form and should include modalities for withdrawal of consent. Consent may be withdrawn by the person concerned at any time and for any reason without any disadvantage or prejudice. Exceptions to this principle should be made only in accordance with ethical and legal standards adopted by States, consistent with the principles and provisions set out in this Declaration, in particular in Article 27, and international human rights law. 3. In appropriate cases of research carried out on a group of persons or a community, additional agreement of the legal representatives of the group or

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community concerned may be sought. In no case should a collective community agreement or the consent of a community leader or other authority substitute for an individual’s informed consent.

Article 7: Persons without the Capacity to Consent In accordance with domestic law, special protection is to be given to persons who do not have the capacity to consent: a) authorization for research and medical practice should be obtained in accordance with the best interest of the person concerned and in accordance with domestic law. However, the person concerned should be involved to the greatest extent possible in the decision-​making process of consent, as well as that of withdrawing consent; b) research should only be carried out for his or her direct health benefit, subject to the authorization and the protective conditions prescribed by law, and if there is no research alternative of comparable effectiveness with research participants able to consent. Research which does not have potential direct health benefit should only be undertaken by way of exception, with the utmost restraint, exposing the person only to a minimal risk and minimal burden and, if the research is expected to contribute to the health benefit of other persons in the same category, subject to the conditions prescribed by law and compatible with the protection of the individual’s human rights. Refusal of such persons to take part in research should be respected.

Article 8: Respect for Human Vulnerability and Personal Integrity In applying and advancing scientific knowledge, medical practice and associated technologies, human vulnerability should be taken into account. Individuals and groups of special vulnerability should be protected and the personal integrity of such individuals respected.

Article 9: Privacy and Confidentiality The privacy of the persons concerned and the confidentiality of their personal information should be respected. To the greatest extent possible, such information should not be used or disclosed for purposes other than those for which it was collected or consented to, consistent with international law, in particular international human rights law.

Article 10: Equality, Justice and Equity The fundamental equality of all human beings in dignity and rights is to be respected so that they are treated justly and equitably.

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Article 11: Non-​discrimination and Non-​stigmatization No individual or group should be discriminated against or stigmatized on any grounds, in violation of human dignity, human rights and fundamental freedoms.

Article 12: Respect for Cultural Diversity and Pluralism The importance of cultural diversity and pluralism should be given due regard. However, such considerations are not to be invoked to infringe upon human dignity, human rights and fundamental freedoms, nor upon the principles set out in this Declaration, nor to limit their scope.

Article 13: Solidarity and Cooperation Solidarity among human beings and international cooperation towards that end are to be encouraged.

Article 14: Social Responsibility and Health 1. The promotion of health and social development for their people is a central purpose of governments that all sectors of society share. 2. Taking into account that the enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition, progress in science and technology should advance: access to quality health care and essential medicines, especially for the health of women and children, because health is essential to life itself and must be considered to be a social and human good; access to adequate nutrition and water; improvement of living conditions and the environment; elimination of the marginalization and the exclusion of persons on the basis of any grounds; reduction of poverty and illiteracy.

Article 15: Sharing of Benefits 1. Benefits resulting from any scientific research and its applications should be shared with society as a whole and within the international community, in particular with developing countries. In giving effect to this principle, benefits may take any of the following forms: special and sustainable assistance to, and acknowledgement of, the persons and groups that have taken part in the research; access to quality health care; provision of new diagnostic and therapeutic modalities or products stemming from research;

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support for health services; access to scientific and technological knowledge; capacity-​building facilities for research purposes; other forms of benefit consistent with the principles set out in this Declaration. 2. Benefits should not constitute improper inducements to participate in research.

Article 16: Protecting Future Generations The impact of life sciences on future generations, including on their genetic constitution, should be given due regard.

Article 17: Protection of the Environment, the Biosphere and Biodiversity Due regard is to be given to the interconnection between human beings and other forms of life, to the importance of appropriate access and utilization of biological and genetic resources, to respect for traditional knowledge and to the role of human beings in the protection of the environment, the biosphere and biodiversity.

Application of the Principles Article 18: Decision-​Making and Addressing Bioethical Issues 1. Professionalism, honesty, integrity and transparency in decision-​ making should be promoted, in particular declarations of all conflicts of interest and appropriate sharing of knowledge. Every endeavour should be made to use the best available scientific knowledge and methodology in addressing and periodically reviewing bioethical issues. 2. Persons and professionals concerned and society as a whole should be engaged in dialogue on a regular basis. 3. Opportunities for informed pluralistic public debate, seeking the expression of all relevant opinions, should be promoted.

Article 19: Ethics Committees Independent, multidisciplinary and pluralist ethics committees should be established, promoted and supported at the appropriate level in order to: assess the relevant ethical, legal, scientific and social issues related to research projects involving human beings; provide advice on ethical problems in clinical settings; assess scientific and technological developments, formulate recommendations and contribute to the preparation of guidelines on issues within the scope of this Declaration; foster debate, education and public awareness of, and engagement in, bioethics.

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Article 20: Risk Assessment and Management Appropriate assessment and adequate management of risk related to medicine, life sciences and associated technologies should be promoted.

Article 21: Transnational Practices 1. States, public and private institutions, and professionals associated with transnational activities should endeavour to ensure that any activity within the scope of this Declaration, undertaken, funded or otherwise pursued in whole or in part in different States, is consistent with the principles set out in this Declaration. 2. When research is undertaken or otherwise pursued in one or more States (the host State(s)) and funded by a source in another State, such research should be the object of an appropriate level of ethical review in the host State(s) and the State in which the funder is located. This review should be based on ethical and legal standards that are consistent with the principles set out in this Declaration. 3. Transnational health research should be responsive to the needs of host countries, and the importance of research contributing to the alleviation of urgent global health problems should be recognized. 4. When negotiating a research agreement, terms for collaboration and agreement on the benefits of research should be established with equal participation by those party to the negotiation. 5. States should take appropriate measures, both at the national and international levels, to combat bioterrorism and illicit traffic in organs, tissues, samples, genetic resources and genetic-​related materials.

Promotion of the Declaration Article 22: Role of States 1. States should take all appropriate measures, whether of a legislative, administrative or other character, to give effect to the principles set out in this Declaration in accordance with international human rights law. Such measures should be supported by action in the spheres of education, training and public information. 2. States should encourage the establishment of independent, multidisciplinary and pluralist ethics committees, as set out in Article 19.

Article 23: Bioethics Education, Training and Information 1. In order to promote the principles set out in this Declaration and to achieve a better understanding of the ethical implications of scientific and technological

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developments, in particular for young people, States should endeavour to foster bioethics education and training at all levels as well as to encourage information and knowledge dissemination programmes about bioethics. 2. States should encourage the participation of international and regional intergovernmental organizations and international, regional and national non governmental organizations in this endeavour.

Article 24: International Cooperation 1. States should foster international dissemination of scientific information and encourage the free flow and sharing of scientific and technological knowledge. 2. Within the framework of international cooperation, States should promote cultural and scientific cooperation and enter into bilateral and multilateral agreements enabling developing countries to build up their capacity to participate in generating and sharing scientific knowledge, the related know-​ how and the benefits thereof. 3. States should respect and promote solidarity between and among States, as well as individuals, families, groups and communities, with special regard for those rendered vulnerable by disease or disability or other personal, societal or environmental conditions and those with the most limited resources.

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Article 25: Follow-​up Action by UNESCO 1. UNESCO shall promote and disseminate the principles set out in this Declaration. In doing so, UNESCO should seek the help and assistance of the Intergovernmental Bioethics Committee (IGBC) and the International Bioethics Committee (IBC). 2. UNESCO shall reaffirm its commitment to dealing with bioethics and to promoting collaboration between IGBC and IBC.

Final Provisions Article 26: Interrelation and Complementarity of the Principles This Declaration is to be understood as a whole and the principles are to be understood as complementary and interrelated. Each principle is to be considered in the context of the other principles, as appropriate and relevant in the circumstances.

Article 27: Limitations on the Application of the Principles If the application of the principles of this Declaration is to be limited, it should be by law, including laws in the interests of public safety, for the investigation, detection and prosecution of criminal offences, for the protection of public health or

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for the protection of the rights and freedoms of others. Any such law needs to be consistent with international human rights law.

Article 28: Denial of Acts Contrary to Human Rights, Fundamental Freedoms and Human Dignity Nothing in this Declaration may be interpreted as implying for any State, group or person any claim to engage in any activity or to perform any act contrary to human rights, fundamental freedoms and human dignity.

NOTES

Chapter 1  A Map of the Terrain of Ethics 1 Winkfield et al. v. Rosen et al., Declaration of D. Alan Shewmon, M.D., Superior Court of the State of California for the County of Alameda, Case No. RG15760730, March 8, 2018. 2 This case is based on Winkfield v. Children’s Hospital, Status Report, Case No. 4:13-​cs-​ 05993-​SBA, United States District Court, Northern District of California, January 7, 2014; Winkfield v.  Children’s Hospital, Oakland, Complaint for Declaratory Relief and Request for Temporary Restraining Order and Injunctive Relief. United State District Court, Northern District of California Oakland, December 30, 2013. Winkfield v. Children’s Hospital Oakland, Case No. RP13-​707598, Order Following Case Management Conference, Superior Court of the State of California in and for the County of Alameda, September, 30, 2014; McMath v. Rosen et al., Plaintiff ’s Complaint for Damages and Wrongful, Superior Court of the State of California for the County of Alameda, December 9, 2015. 3 “Bioethics” has some closely related terms that are sometimes used interchangeably, such as biomedical ethics, medical ethics, and clinical ethics—​but “bioethics” is the currently used umbrella term for clinical/​medical ethics, public health ethics, research ethics, global bioethics, animal ethics, and environmental ethics.

Chapter 2  The Hippocratic Oath and Its Challengers: A Brief History 1 In fact, there is reason to believe that Hippocrates was not a part of this temple, but rather a challenger to the earlier religious healing system. 2 Likewise, until the late twentieth century, pharmacists were taught that a pharmacist was not to put the name of the prescription medication on the label and should not tell the patient the name of the drug, because somehow that was information that could harm patients. They might hear that that drug was used for other diseases and become

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distressed with the thought that they might have such a condition. Or they might read about side-​effects and become unnecessarily alarmed about them. 3 One of the reasons we are convinced that the oath is Pythagorean in origin is because that is exactly the way the Pythagoreans divided the world of medicine, even though most other Greek schools of thought did not. 4 Some people say that the Hippocratic prohibition on abortion dovetails with Christian objections to abortion (Carrick, 1985, p. 159; Edelstein, 1967, pp. 62–​63;Temkin, 1991, p. 182), and that is why the two traditions came together. But if one looks at the ancient tradition of Christianity, one will see that in all the documents that exist from the first eight centuries of Christianity only 11 references are made to the Hippocratic writings (Veatch and Mason, 1987). Nine of those 11 had nothing to do with the oath. They praise the quality of the writings holding it as a model of classical Greek writing style. Only two references mention the Hippocratic Oath in eight centuries of the Christian era. Both were rather hostile to Hippocratic concepts, reflecting a difference between the Christian and Hippocratic traditions. 5 The history of the primum non nocere principle is disputed, but seems to be quite modern, probably nineteenth century. But while this essentially states the principle of nonmaleficence, the Hippocratic Principle emphasizes giving the duty to produce benefit (beneficence) and avoid harm (nonmaleficence) equal weight. These are different concepts as demonstrated in Chapter 6. 6 In Hippocratic medicine, physicians were always male. 7 For a longer discussion of how Hippocratic paternalism poses problems related to the fact that physicians often have a hard time knowing what will benefit the patient, see my volume Patient, Heal Thyself (Veatch, 2009). That volume made the argument that in the normal case physicians cannot appropriately “prescribe” treatments for patients because they do not have an adequate perspective on what will benefit the patient. Even if they know the patient’s illness and the range of available treatments, they cannot know the patient’s goals and values. If they do not know what the patient is trying to accomplish in life and what effects the patient will value, they cannot know which combination of risks and benefits and which expenses are worth it for the patient. 8 Classifying Percival’s work as in the Hippocratic tradition is now the standard reading of his ethics. That is the position taken by Leake (Berlant, 1975; Percival, 1927; Waddlington, 1975, 1984). More recent scholarship is now questioning this reading of Percival. At least, while the Hippocratic Oath focuses on the individual, isolated patient–​physician relation, Percival differs by including extensive discussion of social relations including the duty of the physician to society. It is also now becoming clear that Percival was much more conversant with the contemporary philosophical literature of the time and not just repeating Hippocratic formulas (Baker, 1995). 9 General Conference of UNESCO at its thirty-​third session in 2005. The full text is available on the UNESCO website:  http://​portal.unesco.org/​en/​ev.php-​URL_​ ID=31058&URL_​DO=DO_​TOPIC&URL_​SECTION=201.html, accessed August 18, 2019.

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Chapter 4  Principle-​based Approaches to Moral Problems in Bioethics 1 Engelhardt’s view is complex. He has put forward this view as his ethic for pluralistic societies where there is no agreement on some more specific religious or sectarian moral system. He also recognized a principle of beneficence, but it prevailed only in narrower communities or when individuals exercised their right to be charitable. In the second edition of The Foundations of Bioethics he calls the single, overarching principle for pluralistic, secular communities the principle of permission, but it functions in a way similar to what he had earlier called the principle of autonomy. 2 Rawls’s second principle, in turn, is divided into two parts, and the second part of the second principle must be satisfied before the first part of it. Hence, some have said there is really a rank-​or lexical-​ordering among three conditions. 3 Some, such as Baruch Brody (1988), object to the numerical quantification of the balancing image, claiming that ethics cannot be reduced to such quantification. Brody prefers, instead, the image of “conflicting appeals,” but the result is similar—​sometimes one appeal will win out, sometimes another, depending on power or force of the appeal. 4 Efforts have been made to add more reason to the balancing by claiming that a process of specification of abstract principles should be undertaken so that for particular “domains” or spheres of action, one principle will take precedence without having that principle ranked as prior for all types of actions (DeGrazia, 1992; Richardson, 1990). The problem with specification, however, is that, if a reason can be found for giving priority for one principle over another in one domain, it is hard to see why the same reason wouldn’t give it lexical priority over the other in other domains as well. This would make balancing with specification look essentially like ranking approaches. 5 In their most recent edition, Beauchamp and Childress (2013, p. 16), normally defenders of the balancing approach to resolution of conflict among principles, seem to acknowledge that some moral claims have a “fixed priority” over others. 6 Note this applies only to decisionally capable patients who would have moral claims to have their autonomy respected. Those without decisional capacity cannot be said to be substantially autonomous, so there cannot be a conflict between autonomy and beneficence in their case.

Chapter 5  Alternative Approaches: Virtues, Casuistry and Narrative Ethics, Feminist Approaches, and Care Ethics 1 As Beauchamp and Childress argue (2013, pp. 404–​410), there is no theoretical reason why principlism needs use a top-​down approach. One could start with cases and work up to principles and metaethical issues or work simultaneously at various levels in the levels of moral discourse illustrated in Figure 1 of Chapter 1. The goal then would be to bring the positions at the various levels into harmony, a condition called reflective equilibrium. 2 The Hastings Center hosts a resource for information on undocumented patients: http://​undocumentedpatients.org/​, accessed August 18, 2019.

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Chapter 6  Problems in Benefiting and Avoiding Harm to the Patient 1 It is debatable whether the medical sphere includes both organic and psychological dimensions of well-​being. A  case can be made that the psychological and organic dimensions are different and that medicine in its traditional form is restricted to the organic well-​being. Under that view, psychiatry would be an interdisciplinary specialty that deals with the problems at the borderline between psychological and the organic well-​being. Of course, the physician, as a specialist in organic well-​being under this view, would be responsible for recognizing patient problems in other spheres of life including psychological well-​being, but just as the clergyman should be aware of the possibility of an organic cause of what might at first appear to be a religious problem (but not attempt to treat the organic problem), so the physician should be aware of the possible links between the organic and the psychological well-​being, but not claim expertise in the treatment of the psychological problem. The psychiatrist or psychologist should deal with these. However, regardless of whether the medical sphere ought to include the psychological well-​being, the problem remains the same: Some elements of well-​being will clearly be beyond the physician’s expertise and, even within the medical sphere, there will always be potential goals that can conflict with one another. 2 For two recent discussions of the limits on promoting good consequences for patients and others, see Katz (2002) and Kamm (2007).

Chapter 7  The Ethics of Respect for Persons: Lying, Cheating, and Breaking Promises, and Why Physicians Have Considered Them Ethical 1 Central Ethical Committee, British Medical Journal Supplement (May 1, 1971), p. 30. The BMA appears to have since backtracked on its overturning of the paternalistic exception, perhaps attempting to conform to the General Medical Council, which in Britain has the legal authority to discipline physicians.The BMA by the 1980s (British Medical Association, 1981, p. 12) was publishing a list of five exceptions to the duty of confidentiality. One was when the patient consented to disclosure. Three additional exceptions all involve disclosing to serve various interests of society (research, legal requirements to disclose, and “the doctor’s overriding duty to society”). The fifth exception can only be seen as paternalistic: “When it is undesirable on medical grounds to seek a patient’s consent, but is in the patient’s own interest that confidentiality should be broken.” This is compatible with the British General Medical Council’s position, which reads, “only in exceptional cases should the doctor feel entitled to disregard his [the patient’s] refusal.” (See General Medical Council, 1990.) 2 In 1994, in a little-​noticed modification, the AMA’s Council on Ethical and Judicial Affairs (the new name for the Judicial Council) changed the wording to read “Where a patient threatens to inflict serious bodily harm to another person or himself or herself...,” thus reverting to the older notion of Hippocratic paternalism, while still including the non-​Hippocratic authorization to break confidence to protect third parties (American Medical Association, 1994, p. 72). 3 As we saw in Chapter 3, many commentators define “person” to refer to any being who is capable of self-​consciousness or self-​awareness. That would exclude many

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living humans (such as babies and individuals who are permanently unconscious). Since most of us believe that these “human living nonpersons” still deserve respect, it is not entirely accurate to refer to “respect for persons” as the foundation for the duties we are addressing (unless the traditional conception of “person” is challenged). We could speak of “respect for humans,” but that would exclude some nonhumans who may also command respect. As we saw in Chapter 3, some believe that higher primates and perhaps others also deserve the kind of respect we are discussing here. We shall continue to use the common term “respect for persons,” realizing that the same principles that derive from the notion of respect for persons may also apply to some living humans and others who may not have the capacity for self-​consciousness or self-​awareness.

Chapter 8  The Principle of Avoiding Killing 1 What makes someone “mentally capable” is a subject of much attention in bioethics. Two terms are often used interchangeably—​competence and capacity. In clinical contexts it is helpful to separate them, however. In the United States, someone has the legal presumption of competence once they are legally an adult; that is, unless determined otherwise, adults have presumptive authority over their own decisions. When someone is assessed for capacity, an appropriately licensed physician determines whether that individual adequately understands, appreciates, reasons through, and communicates a stable choice in relation to a particular decision (Appelbaum, 2007; Buchanan and Brock, 1990). The implications of this distinction are complex, which we discuss in the next chapter. 2 We can view an unfavorable benefit/​harm ratio as one that is 1 or less. If the benefits equal the harms then the ratio is 1. Most would assume that such a treatment is not worth pursuing and not morally required. A ratio less than 1—​that is, a treatment with greater harms than benefits—​is surely expendable. An older, more conservative interpretation of grave burden implies that the harms must substantially exceed the benefit before a treatment is morally expendable. According to this view, if a life could be saved with burdens only modestly greater than benefits, apparently one would have a duty to preserve life. However, if one includes life preservation itself as one of the benefits, presumably a great benefit, it is hard to imagine why the burdens would have to greatly exceed the benefits in order for a treatment to be expendable. 3 One can imagine a treatment that has grave burdens and even greater benefits. One interpretation of the grave burdens criterion is that, in this case, there is only so much we can ask of a person, so if the burdens are great enough, the treatment is expendable even if the benefits are larger. Most secular commentators, however, would accept the idea that whenever the burdens exceed the benefits the treatment is expendable, even if the burdens are not great, while in any case in which the benefits exceed the burdens, the treatment is morally appropriate, at least until we consider the right of the patient to refuse and the interests of the society. 4 The President’s Commission still retains the older notion that the burdens must “significantly” exceed the benefits, implying that a treatment would be ordinary or “required” if the burdens merely equaled the benefits. Newer analyses question this view. Some would argue that a treatment should be expendable if the benefits were not larger than the burdens, even if they were not smaller either.

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Chapter 9  Death and Dying for Patients Who Are Not Their Own Decision-​makers 1 Parents are dissimilar from surrogates in that parents should not necessarily try to extend the child’s autonomy or make decisions based on what they believe their child would choose if able (although the child’s preferences could be weighed in their considerations, especially if the child is older). Their judgment of what is in the child’s best interests should take into account how they believe their child should be raised, how the child should develop, and what values should be imparted along the way (Hester, 2012). 2 Based on Custody of a Minor Mass., 379 N.E. 2d 1053 (1978) and other published reports of the case.

Chapter 10  Human Control of Life: Genetics and Modifying Human Nature 1 The brief story is well worth reading. See Shelley (1961 [1817]). 2 According to the Bioethics Research Library database, no fewer than 69 books and articles exploring these themes have appropriated the metaphor in their titles. See, for example, Zylinska (2010), van den Belt (2009), Coady (2009), Walter (2008), Evans (2002), Sproul (1997), Larue (1996), Peters (1997), Goodfield (1977), and Scully and Scully (1987). 3 For a forceful early statement of this perspective, see Ramsey (1970); for a more recent example, see Kass (2009). 4 For a dramatic example of this pro-​interventionist commitment, see Fletcher (1974). 5 For an analysis of how the court erroneously interpreted the facts of this case, see Lombardo (1985). 6 The Genetic Testing Registry, hosted by the National Center for Biotechnology Information, keeps these numbers updated:  www.ncbi.nlm.nih.gov/​gtr/​all/​tests/​ ?term=all[sb]. Also see www.genome.gov/​11006943. Both accessed August 18, 2019. 7 See https://​ghr.nlm.nih.gov/​primer/​precisionmedicine/​initiative and https://​allofus. nih.gov. Both accessed August 18, 2019. 8 GINA does not apply to employers with fewer than 15 employees or for individuals covered by several forms of Federal and military insurance. For information on GINA, see www.genome.gov/​27568492/​the-​genetic-​information-​nondiscrimination-​act-​of-​ 2008 and www.eeoc.gov/​laws/​types/​genetic.cfm. Both accessed August 18, 2019. For an analysis of recent concerns about the limits of GINA, see Zhang (2017). 9 Concerns about genetic discrimination in Japan have changed slightly over the past few years. See Murashige et al. (2012) and Japan Times (2017). 10 The genetic counseling literature offers different interpretations of directive versus nondirective approaches. Seymour Kessler (1997) emphasizes the importance of counseling skills, which include answering questions directly and enabling autonomy without deception, coercion, or threat. For Kessler, giving advice does not necessarily amount to being directive. 11 For an example of a 23andMe report, see https://​education.23andme.com/​example-​ reports/​, accessed August 18, 2019. 12 See www.risingtidebio.com/​what-​is-​gene-​therapy-​uses/​#recent, accessed August 18, 2019. 13 See Weiss and Nelson (1999) and Stolberg (1999). 14 See Weiss and Nelson (2000).

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15 For an early example of genetic intervention that unintentionally changed mitochondrial DNA, see Parens and Juengst (2001). 16 See www.thehastingscenter.org/ ​ j iankuis- ​ g enetic- ​ m isadventure- ​ p art- ​ 2 - ​ d ifferent-​ chinese-​western-​bioethics, last accessed August 18, 2019.

Chapter 11  Reproductive Choice and Advancing Technologies: Ethical Challenges in the Creation of Humans 1 See www.cbsnews.com/​news/​down-​syndrome-​iceland/​, accessed August 18, 2019. 2 Louise Brown, now an adult, married Wesley Mullinder in 2004 and gave birth to her own child, a son, in 2006. In 2010, Robert G. Edwards, the physician who with colleague Patrick Steptoe developed the in vitro fertilization technique and performed the procedure on Louise Brown’s mother, won the Nobel Prize in medicine for the feat. As of 2018 over eight million babies had been born worldwide through in vitro fertilization. 3 See Steptoe and Edwards (1978). 4 For discussion of three-​parent babies, see www.nature.com/​news/​genetic-​details-​of-​ controversial-​three-​parent-​baby-​revealed-​1.21761 and www.npr.org/​sections/​health​shots/​2018/​06/​06/​616334508/​her-​son-​is-​one-​of-​the-​few-​children-​to-​have-​3-​parents. Both accessed August 18, 2019. 5 The cost comes from the American Society of Reproductive Medicine, www. reproductivefacts.org/​f aqs/​frequently-​asked-​questions-​about-​infertility/​q06-​is-​in-​ vitro-​fertilization-​expensive/​, accessed August 18, 2019. 6 See Whitehead and Schwartz-​Nobel (1989). 7 This summary is based on In re Baby M. 109 N.J. 396, 537 A.2d 1277 (1988), Lauritzen (1993), and Whitehead and Schwartz-​Nobel (1989, p. 22).

Chapter 12  Social Ethics of Medicine: Allocating Resources, Health Insurance, Transplantation, and Human Subjects Research 1 U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services, “National Health Expenditures 2016 Highlights,” www. cms.gov/ ​ R esearch- ​ S tatistics- ​ D ata- ​ a nd- ​ S ystems/​ S tatistics-​ Trends-​ a nd-​ R eports/​ NationalHealthExpendData/​NationalHealthAccountsHistorical.html, accessed August 18, 2019. 2 CIA—​The World Factbook, “Country Comparison: Life Expectancy at Birth.” www. cia.gov/​library/​publications/​the-​world-​factbook/​rankorder/​2102rank.html, accessed August 18, 2019. 3 CIA—​The World Factbook, “Country Comparison:  Infant Mortality Rate.” www. cia.gov/​library/​publications/​the-​world-​factbook/​rankorder/​2091rank.html, accessed August 18, 2019. 4 The classic illustration of this is the test for occult blood in the stool used as an indicator of possible cancer. Everyone agrees that this test is worthwhile. The famous paper by Duncan Neuhauser and Ann M.  Lewicki (1975) showed that it cost (in 1975 dollars) $1175 to find a positive result, a wise investment. But when the test is performed, some 9 percent of the positives will be missed. The test can be repeated, finding most of those that were missed the first time, but still missing a few. The

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second time around, it costs $5492 to find a case, still what many would consider a good investment. (The cost per case found goes up because, since there are fewer positives left in the population, more tests have to be performed to find a person who is positive.) If the test is repeated a third time, it will cost $49,150 to find a positive; the fourth time, $469,534, and still not quite all the positives will be located. The test can be repeated indefinitely, each time being more expensive because there are fewer and fewer positives left to be found. The sixth test would cost $47,107,214 to find a case. By the time we get to the sixth test, the cost seems unreasonable, yet from the point of view of the patient whose case was found, it would be valuable. The problem is that there is no clear principle upon which to say we have gone far enough.The test is simple, virtually risk-​free, and could be repeated over and over. At some point every insurance plan will say the cost is too great for the expected benefit given the other uses to which the funds could be put. 5 A global budget is an overall financial funding resource supplied to a hospital department, a managed care organization, a health system, or a national healthcare plan from which those responsible must provide all the care for all the patients in their system. Global budgets are often set by governments or by the collective funding received from insurers or subscribers in such a way that the total funding is not sufficient for healthcare providers to deliver all the services they would like to provide for each patient. The ethical task is to determine, first, whether the overall size of the budget is morally justified and, second, how the inevitably deficient resources should be allocated among the patients. 6 Since these data were gathered, the average length of stay has been reduced considerably. It is now closer to seven days.The ethical problem of having an ideal length of stay that would generate more costs than reimbursements would cover remains the same. 7 Technically, the average length of stay may represent something less than the ideal length, since physicians may already have been motivated by their cost consciousness to send patients home when they had received almost all the benefit that could be expected, rather than keeping them to the point when medical benefit was fully maximized. 8 It is only an approximation because clearly the early days of hospitalization for a myocardial infarction consume resources more intensely. Still, the graph represents the economist’s notion of decreasing marginal utility of units of resources. The more invested, the lesser the incremental addition to the good that is done. 9 Some might be concerned that, if we include the principle of autonomy, we would also have to add services that patients desire even though they are not endorsed by peer review as beneficial. If, however, autonomy only generates “negative rights”—​that is, the right to refuse treatments—​it does not require providing services, only omitting them. 10 Research into social determinants of health reveal how poverty, education, access to healthy food and clean water, level and stability of income, neighborhood safety, and a number of other factors (many of which are outside any one person’s control) impact health. The Centers for Disease Control have a number of sources on this topic: www. cdc.gov/​socialdeterminants/​index.htm, accessed August 18, 2019. 11 See www.kidney-​international.org/​article/​S0085-​2538(19)30185-​1/​fulltext#sec1.1, accessed August 18, 2019. 12 The revised Common Rule, the set of federal regulations that govern human subjects research in the United States, went into effect in 2018. In this revision, pregnant women are no longer listed as a vulnerable population.Vulnerability is instead described as susceptibility to coercion or undue influence. 13 The case is based on Veatch (1979).

INDEX

Note: Page references in italics refer to figures, while those in bold refer to cases. ability to perform vs. potential 53–​54 ableism 208, 211, 220, 221, 230 abortion 28, 30, 42–​43, 51–​54, 134, 135, 143, 163–​164, 195, 201–​202, 203, 206, 218–​222, 226, 269, 279n4 absolute duties see exceptionless duties action theory 7, 14, 100–​101 advance care planning 173–​175, 190 advance directives 174–​182, 190 Affordable Care Act of 2010 218, 240, 250, 254 agency, relational view 94, 103, 136 All of Us Research Program 197 allocation of resources: for genetic testing 198; for healthcare 239–​250, 285n5; for in vitro fertilization 222; for organ transplants 255, 257–​259; for precision medicine 198; and principle of justice 238, 247; for reproductive choices 218, 222; role of clinician 247–​250; triage 239 alternative approaches to principlism 80–​107; care ethics 97–​102; casuistry and narrative ethics 88–​92; feminist approaches 92–​97; virtue-​based approaches 80–​88 American Hospital Association Patient Bill of Rights, 1973 26–​27 American Medical Association (AMA): Code of 1847 23; Principles of Medical Ethics 28, 84, 133, 146

androcentrism 93, 95, 102 animals see nonhuman life, moral standing and status antinomianism 6, 14, 74–​75 appropriate vs. inappropriate treatments 165 Aristotle, Nicomachean Ethics 81, 85 arithmetic summing 116 assisted reproductive technologies (ART) 97, 218, 228–​229, 230 assisted suicide see suicide autonomy: defined 76–​77, 148; and distinction between killing and allowing to die 159–​160; and individual responsibility (UNESCO Declaration) 271; limited familial discretion 187–​190; not considered in Hippocratic ethic 120; principle added to WMA Declaration 76, 133–​134; principle of 7, 9–​10, 22, 64, 66; professional 160; relational view 94, 103, 136; violation of 9, 126, 243–​244; vs. avoidance of killing 71–​72, 167; WMA Declaration pledge on 27; see also consent, informed; negative right (liberty right); positive rights; respect for persons autonomy extended 175, 176, 178, 190 autonomy, procreative 217–​219, 223, 231

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Index  287

avoidance of killing see killing, avoiding Ayala family’s need for bone marrow donor 228

Buck v. Bell 194 Buddhism 29, 49, 137, 158 Burwell v. Hobby Lobby 218

Baby K 187 balancing benefits and harms: Bentham and arithmetic summing 116–​118; subjective vs. objective estimates 109–​112; ways to balance benefits and harms 115–​119 balancing conflicting principles 72–​74 bariatric surgery for minor 92, 93, 95 Beauchamp, Tom  64 behavior vs. character 81–​83 Belmont Report 64, 261 beneficence: balancing with nonmaleficence 73; defined 77, 102, 122; as ethical principle 64, 65; medical paternalism 9, 121–​122; as part of informed consent 137; as principle of right action 81–​82; as subjective Hippocratic utility 110; vs. autonomy 9, 72, 280n1(ch5) benefit/​harm ratio 116–​118, 166, 167, 237, 282n2 benefiting and avoiding harm to the patient 108–​124; complications in determining benefits and harms 108–​119; medical paternalism 119–​122, 144; medical vs. other personal benefits 113–​114; UNESCO Declaration 118–​119, 271 benevolence: defined 102; as virtue 81–​82 Bentham, Jeremy 116–​118, 236 best interest standard 183–​187, 188–​189, 190 bioethics: basics in UNESCO Declaration 147; decision-​making in UNESCO Declaration 274; education, training and information 275–​276; full theory of 12–​14; as umbrella term 278n3; virtues vs. moral right action 86; see also rules and rights birth control see contraception Bouvia, Elizabeth 89, 91 British Medical Association (BMA) 129, 281n1(ch7) broad consent 197, 205, 211 Brody, Baruch, on “conflicting appeals” 280n3 Brody, Howard, on narrative ethics 90 Brown, Louise (first test-​tube baby) 221 Browne, Robert, tried for violation of confidentiality 121–​122, 125, 127, 129–​130

Cabot, Richard 144 cancer, physicians now inform patients of diagnosis 142–​143 capacity, decisional 171–​175, 179–​180, 183, 191, 272, 280n6 Canterbury v. Spence 139–​140, 143 care, ethics of 39, 96–​102, 153, 162–​168 care, virtue of 86, 100 case level of ethics 1–​5 casuistry 4, 14, 88–​92, 102 Catholic moral theology 28, 165–​166, 179 character vs. behavior 81–​83 chemotherapy compromise 188–​189 Childress, James 64 Chinese thought 29 Christian virtues 85; see also Judeo-​Christian  ethics circulatory definition of death 45–​48, 52, 54 Clarke, Barney, artificial heart 46 classical Greek virtues 84–​85 cloning 229–​230 codes of ethics: of healthcare professional associations 26–​28; medical school alternatives to Hippocratic Oath 28; from outside professional medicine 28–​33; support for forgoing treatment 163; see also specific codes by name coercion: defined 230–​231, 264; and exploitation in surrogacy contracts 226; of procreative choices 217, 218 commission/​omission distinction see forgoing treatment; killing, avoiding commodification of bodies and body parts 225–​226, 231 common morality 12 Common Rule 197, 285n12 competence, decisional/​legal 171–​173, 191, 282n2 confidentiality: challenging cases 121–​122, 125, 131–​132; exceptions 281n1(ch7), 281n2(ch7); Hippocratic approach 127, 129–​130; non-​Hippocratic approach 130–​132; UNESCO Declaration on 131, 272; see also disclosure of confidential information; respect for persons conflict among principles 67, 70–​74 consciousness: and competence in ethical decision-​making 171–​173, 272, 282n2;

288 Index

death as irreversible loss of 18, 45, 50, 58; defined 191; in relation to moral status 44, 51, 53; self-​awareness and definitions of death 281–​282n3; ventilator does not restore 49, 167; see also moral standing consequence-​maximizing principles: action can be morally wrong even if consequences good 125; autonomy vs. other principles 71; balancing beneficence and nonmaleficence 73; include Hippocratic ethic 110; vs. duty-​based principles 65–​66, 126, 127, 236; vs. respect for persons 235; see also utilitarianism consequentialism: defined 77, 148; distinction between killing and allowing to die 156–​157; justification for dishonesty 146 contraception 52, 121–​122, 218, 219 contract theory, defined 14 cost containment: DRG limits and myocardial infarction 241; ethical principles at individual level 242–​244; ethical principles at social level 244–​247; ethical responses to pressures of 240; role of clinician 247–​250 cost-​benefit analysis: ethic of social utility underlies 236–​237, 238, 244–​247; performing test for occult blood in stool 284n4 CRISPR 209–​211 Cruzan, Nancy 50 Cruzan v. Director, Missouri Dept. of Health 176 cultural diversity: and justice 253–​254; in relation to families and genetics 218; in respect for the dead 227–​228; UNESCO Declaration on 148, 273 death: definitions 1–​3, 44–​51, 57–​58; definitions and abortion debate 51–​54; definitions and avoiding killing 153; impact of allowing mercy killing on numbers of nonvoluntary deaths 157; preventing as main purpose of medicine before 1960 115; risk and doctrine of double effect 163–​164 death and dying decisions: for patients who cannot make decisions 171–​192; advance care planning 174–​182; capacity and competence 171–​173, 180; formerly mentally capable patients 173–​178;

mentally incapable patients with no surrogates 183–​184; mentally incapable patients with surrogates 185–​190 decision-​making see bioethics; capacity; competence; informed consent; surrogate decision-​makers demand for healthcare services 239–​240 deontological (duty-​based) ethics: avoiding killing 153; defined 77, 123, 148; respect for persons as 126; vs. consequentialist principles 66, 73–​74, 110, 127, 236; see also Kant, Immanuel Dilantin, study of informed consent 140–​141 direct-​to-​consumer genetic testing 203–​205 disability: advance care planning in relation to 179; agency with 136; Elizabeth Bouvia decision 89; as part of intersectional identity 93, 97; in relation to procreative autonomy 217, 223; termination of pregnancy 220–​221; see also ableism disclosure of confidential information: in AMA Principles of Medical Ethics 133; to benefit third parties 234; genetic risk not disclosed 201–​202; legal requirements 130–​131; relevant information must be disclosed 144; standards of disclosure 140–​142, 149; see also confidentiality; informed consent discrimination: Declaration of Geneva protection against 27; disability and 221; experiences of 97; genetic 199, 204, 211; UNESCO Declaration protection against 273 disease, identifying carriers of genetic 205–​206 disease states, comparison of interventions 200–​201, 237 The DNA Mystique (Nelkin and Lindee) 195 DNR (Do Not Resuscitate) order: challenging issues with 64–​65, 168; as portable medical order 174 doctrine of double effect 119, 163–​164, 168 donor child, creating with IVF 228–​229 Down syndrome (trisomy 21) 202, 220–​221 duty: different concepts 68–​70; duty proper 70, 71–​72, 77; limits on physician’s 144–​145; see also deontological (duty-​based)  ethics

28

Index  289

Edelstein, Ludwig 20 Edwards, Robert 221 efficiency vs. fairness of medical services 237–​238 embryos: destruction of 55–​56; moral standing of fetuses and 38, 42, 51–​56; use in human genome project 195; use in reproductive technologies 218 Engelhardt, H. Tristram, on bioethics principles 71, 280n1 entitlement rights see positive rights environmental protection, UNESCO Declaration on 274 equality and equity in UNESCO Declaration 272–​273 equilibrium, reflective 13, 103, 280n1(ch5) ethics 1–​17; case problems 1–​5; committees (UNESCO Declaration) 274; full theory of bioethics 12–​14; legal does not mean ethical 156; levels of moral discourse 3–​10; meaning or source of ethical norms 11; metaethics 10–​12; see also bioethics eugenics 194, 199–​200, 206, 212, 217 euthanasia: defined 168–​169; Dutch assisted suicides require voluntary requests 157; euthanizer role could be left to non-​physicians 156 exceptionless duties 68–​70, 77 exceptions, building into rules 74 expendable, morally 157–​158, 165–​166 exploitation 97, 218, 226, 231 extraordinary means: criteria for classifying morally expendable 165–​166; defined 169; distinction from ordinary means 153, 164–​168; morally expendable or inappropriate 165; problems with interpretation 181 extrinsic value 14 Faden, Ruth 140–​141 feeding tube removal controversy 177–​178 feminism/​feminist theory: bioethicist emphasis on care 86; defined 14, 102–​103; environmentalists on nonhuman life 39; feminist approaches to medicine 92–​96; problems with feminist approaches 96–​97 fetuses, moral standing 38, 42–​43, 51–​56 fidelity: confidentiality as part of 127–​132; defined 77, 148; as deontological principle 66; keeping promises 69–​74, 126, 128; vs. avoidance of killing 71–​72

Fletcher, Joseph 75, 143–​144 Florence Nightingale Pledge 84 food and fluids, withholding 167–​168 forgoing treatment: active killing vs. allowing to die 154; affirming right of patients to make own decisions 179; defined 169; ethics of caring for critically ill 153; stoppings as 162–​163; vs. desired treatments in advance directives 181–​182; vs. killing 156; withholding food, fluids, CPR, and medications 167–​168 formalism 77, 126, 148; see also deontological (duty-​based) ethics formerly mentally capable patients: going beyond advance directives 176–​178; principle of autonomy extended 175 Frankenstein (Mary Shelley) 193, 194 Frey, Ray 57 Gelsinger, Jesse, gene therapy failed 207 generations, future concern for in UNESCO Declaration 274 genetic code, fixing of 53 Genetic Information Nondiscrimination Act of 2008 (GINA) 199 genetics and modifying human nature 193–​215; benefits and risks 194–​195; collection of genetic information without consent 196–​199; ethics of manipulating nature of human species 193–​194, 210, 216–​217; genetic discrimination 199, 204, 211–​212; genetic engineering 206–​211, 212; genetic essentialism 195, 205, 212; genetic screening 205–​206, 212; genetic testing and counseling 199–​205, 212, 220–​221, 283n10; genetic therapy or enhancement 207–​208, 212, 222; human genome project 195 genobility 209, 212, 231 germline or reproductive cell gene therapy 208–​209 Gilligan, Carol 98–​99 Golden State Killer, DNA found in open-​source database  205 gratitude 67, 77 grave burden 165–​166, 167, 181, 234, 282n3, 282n4 Green, Chad, leukemia treatment 188–​189 guardians, legally appointed 184–​185 guidelines see situationism/​particularism

290 Index

harm see balancing benefits and harms; benefit/​harm ratio; benefiting and avoiding harm to the patient; nonmaleficence (not doing harm) He Jiankui, ethical scrutiny 210–​211 health insurance 240, 250–​254 health only one piece of well-​being  114 healthcare: entitlements 244; international comparisons 240; leaving resources for other goods in life 246; as a matter of justice 252; as social good 251–​252; and society’s interest 251; see also allocation of resources healthcare power of attorney (proxy directive) 174, 182, 191 heart attacks, women’s experience different than men’s 96 hearts, artificial and transplanted 46–​47 HeLa cells 196 higher-​brain definition of death 49–​50, 51, 58 Hinduism 29, 56–​57, 85, 86 Hippocratic ethics: alternative codes and oaths 25–​33; collapse of Hippocratic tradition 25; defined 123; Hippocrates may not have been part of temple 278n1(ch2); history and issues with 18–​20; issues of concern 108–​119, 131–​132; modern codes within Hippocratic tradition 22–​25; oriented to individual patient 235; paternalism 119–​122, 125, 127; therapeutic privilege 137–​140 Hippocratic Oath: affirms virtues of purity and holiness 84; code section 21–​22; Hippocratic Principle 33; oath of initiation 20–​21, 269–​270; physician’s duty to protect patients from themselves 121; vow of secrecy 20–​21, 129–​130, 269; see also codes of ethics Hippocratic utility: consequentialist vs. deontological approaches 110–​111; for mentally incapable patients 182; objective form 243, 244; subjective form 242–​243 HIV: CRISPR intervention 210; reporting requirements 131 homicide, merciful 30 homicide on request: defined 169; vs. assisted suicide 160–​161 honesty in AMA Principles of Medical Ethics 146

hospital stay, aggregate net benefit as function of length 242–​243, 285n7 Human Genome Project 195, 212 human, moral and nonmoral uses of the word 43–​44 human stem cells see stem cells Huntington’s disease 201–​202 hysterectomies, subjective vs. objective estimates of benefit and harm 109–​112 The Immortal Life of Henrietta Lacks (Skloot) 197 in vitro fertilization (IVF) 55, 217, 221–​229, 231 individualism 135–​136, 148 inequity problems in social utility 237–​239 informed consent: before medical treatment 5, 7, 74, 75, 134; derived from respect for persons and autonomy 126, 133–​143; doctrine and principle 133–​142, 261; historical views of 21, 23, 26, 27; Lacks’ cancer cells collected without 196–​197; letting die requires informed refusal process 159; for posthumous reproduction 227; standards of 140–​142; stopping treatment when consent canceled 162–​163; therapeutic privilege and 137–​139; UNESCO Declaration 271–​272; see also broad consent; disclosure of confidential information; voluntary consent initiative petitions for physician-​assisted suicide 161–​162 innovative therapy vs. research 26, 260–​261, 264 intention and doctrine of double effect 119 international cooperation, UNESCO Declaration on 276 intersectionality of identities 97, 103 intrinsic value 8, 10, 12, 15, 126 irreversibility, problem of 46–​47 Islam 29–​30, 85 IVF see in vitro fertilization (IVF) Japan, medical ethics of 30, 85 Judaism 28, 56, 85, 154, 163 Judeo-​Christian ethics 129, 135–​136 justice: defined 77; equality and equity in UNESCO Declaration 272; as ethical principle 64, 67, 231, 238–​239, 247; healthcare as matter of 252; perspective vs. ethic of care 98–​101; remaining free

290

Index  291

of all intentional injustice 269; vs. social utility in research 261–​263 Kant, Immanuel 126, 127, 129, 136, 145 Kevorkian, Jack 160–​161, 162 killing, avoiding 152–​170; active killing vs. allowing to die 154–​162; conflicting promises 69–​74; defined 77; direct vs. indirect killing 163–​164; invalid arguments for omission/​commission distinction 155–​156; missing from UNESCO Declaration 147–​148; no use of deadly drugs 269; ordinary vs. extraordinary means 164–​168; in organ donation 255–​256; as principle 66, 76; problem with what it means to be dead 44; stopping vs. not starting 162–​163 Kline, John 137–​140 Kohlberg, Lawrence 98–​99 Lacks, Henrietta 196–​197 legalism 6, 15 lexical ordering 71–​74, 77 liberal political philosophy 21, 27, 31, 33, 134, 137 liberty rights see negative right (liberty right) limited familial autonomy/​discretion 187–​190, 191 liver transplants, local vs. regional priority 257–​258 living will (substantive directive) 174–​176, 178–​179, 191 loyalty see fidelity lying see respect for persons machines, references ambiguous in advance directive 181 mandatory coverage 252–​253 McMath, Jahi 1–​3, 4–​5, 13–​14, 18, 44, 49–​50, 186, 187, 189–​190 Medicaid, moral claims of justice 246–​247 medical assistance in dying see suicide medical benefits: four conflicting goals within medical sphere 115–​116; vs. other personal benefits 113–​114, 246 medical information, not sharing with patients 20, 142–​143, 278–​279n2 “medically contraindicated,” term may justify dishonesty 146 Mendel, Gregor 194

mentally incapable patients: determining capacity and competence 171–​173; implications of distinction between killing and allowing to die 157–​159; those with surrogates 185–​190; those without surrogates 183–​185; UNESCO Declaration on 271–​272 mercy killing 152, 153, 155–​157, 158, 161, 178, 180 mercy, virtue of 85 metaethics 10–​12, 15 Meyer, Bernard 143 Mill, John Stuart 236 mitochondrial DNA 222 Model for End-​stage Liver Disease (MELD) 257–​258, 259 moral discourse, levels of 3–​10 moral rules and principles 5, 12–​13, 15, 66–​67, 74–​76, 99–​100; see also codes of ethics; rules and rights moral standing 37–​62; and abortion 51–​54; concept 39–​40, 58; and definitions of death 44–​51; and fetal development 42–​43, 51–​56; and human stem cells 54–​56; moral and descriptive uses of the term person 40–​43; moral and nonmoral uses of the word human 43–​44; of nonhuman animals 56–​57; problems with different codes or oaths 37–​39 moral status see moral standing multiple lists problem 253–​254 myocardial infarction, cost containment for 241, 242–​243, 245 naked virtue problem 87–​88, 103 narrative ethics 15, 90–​92, 103 Nash family, creating a donor child with IVF 228 Natanson v. Kline 137–​140 National Society of Genetic Counselors 200 natural death act legislation 180 Nazism 23, 26, 194, 217, 261 negative right (liberty right): abortion under Roe v.Wade 135; autonomy as 136, 159, 285n9; defined 149; vs. positive right in letting die 162 Nelkin, Dorothy, and M. Susan Lindee, The DNA Mystique 195 Netherlands, mercy killing policy 155, 156–​157 nondirective ethic 202, 212

292 Index

nonhuman animals: moral standing and moral status 38–​40, 56–​57, 158, 281–​282n3; organs of 255; see also speciesism nonmaleficence (not doing harm): balancing with beneficence 73; defined 78, 110, 123; as ethical principle 64–​66;; killing wrong because often causes harm 152; physicians sometimes cause harm 118–​119 normal health 208 normative ethics: defined 15; theories and newer approaches 6–​10 norms: defined 15; meaning or source of ethical 11–​12; to whom do they apply 37–​38; see also ethics; normative ethics Nuremberg Code 25–​26, 261 objective Hippocratic utility 123 objective vs. subjective estimates of benefit and harm 108–​112 Ohio study on definition of death 50 Oken, Donald, study on telling truth to patients with cancer 142–​143 “On the Supposed Right do Tell Lies from Benevolent Motives” (Kant) 145 opportunity, as a consideration for justice 238–​239 opt-​in vs. opt-​out model see transplantation of organs ordinary means: defined 169; distinction from extraordinary means 153; morally required or appropriate 165 Oregon Health Services Commission 246–​247 organ transplantation see transplantation of organs paradigm cases 4; see also casuistry parental decision-​making see limited familial autonomy/​discretion; pediatric ethics; surrogacy/​surrogate (gestational) particularism see situationism/​particularism paternalism: defined 33, 123, 149; in genetic counseling 200; of Hippocratic ethic 9, 21–​22, 129–​130, 235, 279n7, 281n1(ch7), 281n2(ch7); problem of medical 119–​122, 125; see also therapeutic privilege Patient ABC v. Healthcare Trust 202 pediatric bariatric surgery 92–​97 pediatric ethics: issues in 82, 84–​86, 92, 186, 188–​189, 190, 228–​229

peer review, patient’s own evaluation given priority over 112 Percival, Thomas: four virtues in his Medical Ethics 84; Percival’s Code 22–​23, 279n8 personal well-​being vs. medical benefits 113–​114, 281n1(ch6) person/​personhood: definitions  58; moral and descriptive uses of the term 40–​43; respect for persons 64, 67, 78; see also moral standing; respect for persons phronesis 81, 103 physician-​assisted suicide see suicide Pius XII (pope) 165–​166, 234 Plato 85 pluralism: in ethics 280n1(ch4); UNESCO Declaration on 148, 270, 273, 275 POLST/​MOLST see portable medical order portable medical order 174–​175, 191 positive rights 135, 149 posthumous reproduction with IVF 226–​228 potential vs. ability to perform 53–​54 precision medicine 198, 212 preimplantation genetic diagnosis (PGD) 200–​201, 212, 222–​223, 229 prenatal testing and ethics of abortion 219–​221 President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research: combined substantive and proxy directive 179; definitions of death 48; on extraordinary treatment 166; on limited familial discretion 188 President’s Council on Bioethics, definitions of death 45, 48 prima facie duties 69–​72, 74, 78 primum non nocere principle 21, 73, 118–​119, 279n5 principle-​based approaches: to moral problems in, bioethics 63–​79; conflict among principles 67–​74; different concepts of duty 67–​70; principlism and lists of principles 63–​67, 68; translating principles to rules 74–​76; see also deontological (duty-​based) ethics; Principles of Biomedical Ethics principles: application (UNESCO Declaration) 274–​275, 276–​277; complementary and interrelated (UNESCO Declaration) 276; defined 78; distinction between killing

29

Index  293

and allowing to die 158–​159; medical ethics 236–​238; missing from UNESCO Declaration 147–​148; problems with abandoning patient-​centered ethic 249 Principles of Biomedical Ethics (Beauchamp and Childress) 64 Principles of Medical Ethics see American Medical Association (AMA) principlism 63–​67, 68, 78, 280n1(ch5); see principle-​based approaches procreative autonomy see autonomy, procreative professional virtues 83, 84; see also codes of ethics Promethean quest, genetic manipulation as 194, 195 pronatalism 218–​219, 231 proportionality or benefit/​harm ratio 165–​166, 167, 168, 169 Protestant ethics 28–​29 proxy directive 174, 179 psychiatry, problematic diagnoses for women 95–​96 Pythagorean origin of Hippocratic Oath 20, 279n3 Quality of Well-​Being Scales 237 quality-​adjusted life-​year (QALY) 237, 238 quantification problems in social utility 237 Quinlan, Karen 50, 143, 187 ranking (lexically ordering) principles 71–​74 rationing 240, 247–​250 Reed, Sheldon 199–​200 Regan, Tom  57 relational view of autonomy/​agency 94, 103, 136, 149 relativism 11, 12, 15; see also universalism religion: accommodating moral objections to death standards 49; autonomy often underemphasized in 137; concerns regarding allowing to die 152, 154, 158; religious virtues 83, 85–​86; some support for organ transplant 255; Western vs. Eastern thought on nonhuman species 56–​57 religious and national codes of medical ethics 28–​33, 56–​57 reparation 67, 78 reproductive cell gene therapy 208–​209, 212

reproductive choice and advancing technologies 216–​233; abortion and prenatal testing 219–​221; cloning 229–​230; creating a donor child with IVF 228–​229; IVF 221–​228; feminist views of 96–​97; many options not feasible for most people 218; new options bring new choices and responsibilities 216–​217; procreative autonomy 217–​219 research: involving human subjects 117, 207, 210, 260–​261; justice in design 262–​263; organ procurement for 255; participants unable to benefit from their genetic samples 197; sharing of benefits (UNESCO Declaration) 273–​274; women underrepresented 95 respect for persons 125–​151; avoiding killing part of 158; defined 149; fidelity and duty of confidentiality 127–​133; justice 67; in medical research 261–​262; problems with Hippocratic ethics 119–​122, 125; UNESCO Declaration on 146–​148, 272; usage of term 281–​282n3; veracity 142–​146; vs. Hippocratic paternalism 235; see also autonomy; disclosure of confidential information; informed consent; person/​personhood; principle-​based approaches; principlism Richardson, Henry 76 rights: defined 15, 33; to healthcare 251–​252, 253; human dignity and human rights (UNESCO Declaration) 146–​148, 271, 272–​273, 277; positive and negative 134–​137, 149; related to duties 126; right to an open future 223, 231; of women and possibly fetus 134; see also liberal political philosophy rights-​based defense of the moral status of animals 58 Roe v.Wade 135, 143 Ross, W.D. 66–​67, 70 rules, translating principles to 74–​76 rules and rights 4–​6; see also codes of ethics; moral rules and principles; rights rules of practice 6, 15, 75–​76, 78, 97–​100 rules of thumb see situationism/​ particularism sacredness of life 57, 127, 154, 158, 162 Schiavo, Terri 50, 177–​178 secular virtues 83, 84–​85

294 Index

self-​awareness/​self-​consciousness see consciousness; moral standing sexual relations with patients forbidden 269 Shelley, Mary Wollstonecraft, Frankenstein 193, 194 sickle-​cell disease 205–​206 side-​effects: of Dilantin 140–​141; requires value judgment 146 single-​principle theories 70–​71, 78 situationism/​particularism 6, 15, 75, 78, 99–​100 Skloot, Rebecca, The Immortal Life of Henrietta Lacks 196–​197 social (or classical) consequentialist ethics see utilitarianism social ethics of medicine 234–​268; allocation of resources 239–​250; bioethical considerations for third parties 234, 263; defined 122; exemption for clinicians 249–​250; health insurance 250–​254; justice as alternative social ethical principle 238–​239; limits of the ethics of individual relations 235–​236; need for a social ethic in medicine 235–​239; research involving human subjects 259–​263; UNESCO Declaration on 273; see also consequentialism; justice; social utility social utility 236–​238, 246–​247, 258, 260–​262 solidarity and cooperation, UNESCO Declaration on 273 somatic cell gene therapy or enhancement 208–​212 somatic definition of death 45–​48, 52, 57 Soviet Union, code of ethics 31 speciesism 57, 58 specification 76, 78, 280n4 state laws: definitions of death 1–​2, 49, 51; physician-​assisted suicide 155–​156, 160, 161 states, role of, UNESCO Declaration on 275 stem cells: defined 58; and moral standing 54–​56; moral standing of embryos 38 Steptoe, Patrick and development of IVF 221 sterilization 194, 200, 217 Stern, William and Betsy, surrogacy case 224–​225

subjective Hippocratic utility 123 subjective vs. objective estimates of benefit and harm 108–​112, 166 substantive directive see living will substituted judgment 175–​176, 191 suicide: assisted 22, 148, 155–​157, 160–​162, 168, 179–​180; complicity in 262–​263; Kant’s view of 127 summary rule 75 surgery: in advance directives 181; consenting for 5, 7, 75, 99–​101, 134, 138; doctrine of double effect and 119, 163; oath to not perform 21, 23, 84, 269; resource use 243, 246, 248, 251; risks and benefits 92–​93, 112, 186; see also pediatric bariatric surgery surrogacy/​surrogate (gestational) 97, 223–​226, 231 surrogate decision-​makers: decision to allow dying 159, 172, 177–​178; defined 169, 191; determining for patients without families 184–​185; dissimilar from parents 283n1(ch9); may have to go to court 176; advance directives as guide for 182; next of kin as presumed surrogate 185; options when best possible course not chosen 187–​190; standards used in surrogate decisions 173; see also autonomy extended; capacity; healthcare power of attorney; substituted judgment; best interest standard; limited familial autonomy/​ discretion Tay–​Sachs genes 205–​206 terminally ill patients: bioethical principles relating to 64–​67; limiting mercy killings to 158; ordinary vs. extraordinary treatment 153; see also death and dying decisions therapeutic privilege 137–​140, 143, 149 third parties: bioethical considerations 234, 235, 263, 281n2(ch7); protecting others from serious harm 130–​131; see also grave burden three-​parent babies  222 trade-​offs in allocation decisions 248–​249 transnational practices, UNESCO Declaration on 275 transplantation of organs: heart 46–​48; creating donor child for 228–​229; ethics of 254–​259; life support to enable organ

294

Index  295

donations 182; local vs. regional priority 257–​258; opt-​in vs. opt-​out models 255, 264; organ allocation 256–​259; organ procurement 255–​257 treatment see extraordinary means; forgoing treatment; ordinary means triage 239 Truman, John, compromise on leukemia treatment 188–​189 truth telling see veracity Tufts University, oath of School of Medicine 28 unconscious persons see consciousness; value of unconscious life undocumented patients 97–​98 UNESCO Universal Declaration on Bioethics and Human Rights (UNESCO Declaration) 31, 131, 146–​148, 270–​277 universal or near-​universal health insurance 253–​254 universalism 11, 16 U.S. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research see Belmont Report uselessness as basis of forgoing treatment 165, 167 utilitarianism 57, 58, 78–​79, 115, 116, 123; see also Bentham, Jeremy; consequence-​maximizing principles; consequentialism; Hippocratic utility; Mill, John Stuart; social utility vaccination of children 82–​86 value of unconscious life 3, 18, 152, 158, 167, 186, 189–​190, 281–​282n3 value theory 7, 8, 16; see also ethics ventilatory support 49, 167, 186

veracity: change in physician attitudes 142–​146; could cause harm 67; defined 79, 149; as duty-​based principle 66, 126; missing from UNESCO Declaration 147–​148 virtue: defined 103; naked virtue problem 87–​88, 103; virtue lists 82–​83; virtue theory 9–​10, 16, 80–​86, 100–​101; wrong virtue problem 87, 103 voluntary consent: and informed choice in genetic counseling 157–​158; requirements for informed and 138 voluntary requests for physician-​assisted suicide 157–​158 vulnerable persons: in care ethics 99; in feminist approaches 94; genetics and 199; justice consideration of 67; in research 261–​262, 285n12; never mentally capable patients 185; transnational surrogates as 226; UNESCO Declaration on 147, 272; see also exploitation well-​being see personal well-​being vs. medical benefits Whitehead, Mary Beth, surrogacy case 224–​225 whole-​brain-​oriented definition of death 48–​49, 51–​52, 58 withdrawing treatment the same as withholding 162–​163; see also death and dying decisions WMA see World Medical Association Declaration of Geneva (WMA) World Medical Association Declaration of Geneva (WMA) 23–​24, 27, 76, 84, 114, 130, 235 wrong virtue problem 87, 103 Youk, Thomas 161