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Medical Ethics Accounts of

Ground-Breaking Cases EIGHTH EDITION

Gregory E. Pence University of Alabama at Birmingham

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MEDICAL ETHICS: ACCOUNTS OF GROUND-BREAKING CASES, EIGHTH EDITION

Published by McGraw-Hill Education, 2 Penn Plaza, New York, NY 10121. Copyright © 2017 by McGraw-Hill Education. All rights reserved. Printed in the United States of America. Previous editions © 2015, 2011, and 2008. No part of this publication may be reproduced or distributed in any form or by any means, or stored in a database or retrieval system, without the prior written consent of McGraw-Hill Education, including, but not limited to, in any network or other electronic storage or transmission, or broadcast for distance learning.

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Library of Congress Cataloging-in-Publication Data

Names: Pence, Gregory E., author. Title: Medical ethics: accounts of ground-breaking cases / Gregory E. Pence,  University of Alabama at Birmingham. Other titles: Classic cases in medical ethics Description: Eighth edition. | New York, NY: MHE, [2017] | Audience: Age:  18+ | Editions 1-5 published under: Classis cases in medical ethics. |  Includes bibliographical references and index. Identifiers: LCCN 2016026704 | ISBN 9781259907944 (alk. paper) Subjects: LCSH: Medical ethics--Case studies. Classification: LCC R724 .P36 2017 | DDC 174/.2--dc23 LC record available at  https://lccn.loc.gov/2016026704

The Internet addresses listed in the text were accurate at the time of publication. The inclusion of a website does not indicate an endorsement by the authors or McGraw-Hill Education, and McGraw-Hill Education does not guarantee the accuracy of the information presented at these sites.

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iii

This new edition retains in-depth discussion of famous cases, while providing updated, detailed analysis of the issues those cases raise. Each chapter also focuses on a key question that could be debated in class.

Unique to this text is a single, authorial voice integrating description of the cases and their issues with historical overviews. The text is the only one that follows cases over decades to tell readers what did and, often, what did not, happen. Written by a professor who helped found bioethics and who has published in the field for 40 years, the text gives students a sense of mastery over this exciting, complex field. After they have read the book, I hope that students will feel that they have learned something important and that time studying the material has been well spent.

New to the 8th Edition New research was added to each chapter, and a new list of topics to debate was included on the inside cover of the book. Every chapter has been rewritten, tight- ened, and augmented; issues have been clarified. Highlights of the new edition are outlined here.

A NEW CHAPTER ON ALCOHOLISM (and addiction): Conflicting views on causes of alcoholism: Alcoholics Anonymous, neuroscience, Kant, genetics, social sciences, Fingarette. Focus on the famous case of Ernie Crowfeather.

A MAJOR NEW CASE: The Bucharest Early Intervention Project: Is it the Tuskegee Study of neuroscience? Research on vulnerable human populations?

A MAJOR NEW SECTON on research on people with schizophrenia, including cases of patients harmed by such research.

Discussion of Ebola and Zika virus in AIDS chapter: How it has resembled our responses to AIDS?

Discussion on CRISPR, the revolutionary method of changing genes that almost any geneticist can use to change a species and its progeny.

Update on the Patient Protection and Affordable Care Act: Why it’s working and what are its latest problems?

Preface

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iv Preface

Death and Dying: The case of Brittany Maynard; the case of Jahi McMath.

Comas: Update on cases of Terri Schiavo, Belgian coma patient Rom Houben, and minimally conscious states.

Abortion: Updates on death of Kenneth Edelin, declining numbers of abortion in America. New topics: Telemedicine and early-stage self-abortions, the Planned Parenthood video controversy, US Supreme Court decision limiting TRAP (Tar- geted Regulation of Abortion Providers) laws.

Assisted Reproduction: Updates on the Gosselins, McCaughey septuplets, IVF clinics, mistaken swaps of embryos, outsourced surrogates, and foreigners using American surrogates; a sperm donor meets eight of his children, right-to-life groups file in court to protect frozen embryos; state surrogacy laws, Snowflake (embryo adoption and its high costs), brighter chances for infertile women aged 30–40 of having IVF baby on late tries.

Stem Cells, Cloning, and Embyros: Updates on stem cells, battles over embryos among divorced couples and right-to-life friends, mitochondria-swapping to cure genetic disease (“a child with three parents”); hucksterism in selling stem- cell therapies; continuing problems in cloning primates.

Impaired Babies and Americans with Disabilities Act: Update on “Baby Jane Doe” Keri-Lynn, Marlise Munoz case; UAB’s controversial SUPPORT study on preemies, relevance to babies born with microcephaly from Zika virus.

Ethics of Research on Animals: Updates on the Great Ape Project, Edward Taub’s work, legal protection for chimpanzees in research.

Transplants and Organ Allocation: Updates on numbers, costs, and outcomes, especially for tracking bad outcomes of adult organ donors.

Genetics chapter: The pitfalls and promises of: personalized genetic testing and Big Data, CRISPR, and testing for diseases with no treatments.

Chapter on Enhancement: New emphasis on relation of enhancements to people with disabilities.

If you have suggestions for improvement, please email me at: pence@uab.edu.

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Gregory E. Pence is professor and chair of the Department of Philosophy at the University of Alabama at Birmingham. Between 1977 and 2011, he taught medical ethics at the University of Alabama Medical School. He still directs its Early Medi- cal School Acceptance Program.

In 2006, and for achievement in medical ethics, Samford University awarded him a Pellegrino Medal. He testified about human cloning before committees of the U.S. Congress in 2001 and the California Senate in 2003.

He graduated cum laude in Philosophy with a B.A. from the College of William and Mary in 1970 and earned a Ph.D. from New York University in 1974, working mainly under the visiting professor, Peter Singer.

In 2010, his UAB team was national champion of the Intercollegiate Ethics Bowl. His teams won national championships of the Bioethics Bowl at Duke University in 2011 and Florida State University in 2015. At UAB, he has won both the Ingalls and President’s Awards for excellence in teaching.

• He has written six trade books, including Who’s Afraid of Human Cloning? (1998), Re-Creating Medicine: Ethical Issues at the Frontiers of Medicine (2000), Designer Food: Mutant Harvest or Breadbasket of the World? (2002), Cloning after Dolly: Who’s Still Afraid? (2004), How to Build a Better Human: An Eth- ical Blueprint (2012), and What We Talk about When We Talk about Clone Club: Bioethics and Philosophy in Orphan Black (2016).

• He has edited four books of general essays, Classic Works in Medical Ethics (1995), Flesh of My Flesh: The Ethics of Cloning Humans (1998), The Ethics of Food: A Reader for the Twenty-First Century (2002), and Brave New Bioethics (2004).

• He has published over 60 op-ed essays in national publications: two each in the New York Times, Los Angeles Times, Newsweek, and Chronicle of Higher Education; one each in the Los Angeles Times, Atlanta Journal-Constitution, and Philadelphia Inquirer; and 35 in the Sunday Birmingham News. His reader, Brave New Bioethics, collects these essays from 1974 to 2002.

• A full list of books by Gregory Pence is available through Connect.

About the Author

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viii

Several people helped in preparing the 8th edition of this text. Users of this text also improved the new edition with their suggestions and

corrections. In particular, Charles Cardwell, Pellissippi State Community College in Tennessee, and Jason Gray, who taught bioethics at UAB for two years, spotted many errors and made many helpful suggestions, as did my colleagues Josh May and Matt King. My research assistant Karan Jani wrote helpful summaries of the Bucharest Early Intervention Project and CRISPR. Lillian Chien provided amazing proofing at the last stage.

The ansrsource developmental editing, lead by Anne Sheroff and Reshmi Rajeesh were the perfect editors and helped me take this text to a higher level. I also appreciate the following reviewers for the eighth edition:

Brendan Shea, Rochester Community and Technical College, Minnesota Sarah Schrader, University of California, Santa Cruz, California

Acknowledgments

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ix

Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles  1

Chapter 2 Requests to Die: Terminal and Nonterminal Patients  19

Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo  57

Chapter 4 Abortion: The Trial of Kenneth Edelin  84

Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents  109

Chapter 6 Embryos, Stem Cells, and Reproductive Cloning  132

Chapter 7 Impaired Babies and the Americans with Disabilities Act  157

Chapter 8 Medical Research on Animals  179

Chapter 9 Medical Research on Vulnerable Populations  196

Chapter 10 Ethical Issues in First-Time Organ Surgeries  221

Chapter 11 The God Committee  243

Chapter 12 Using One Baby for Another  264

Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender Persons  284

Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia  299

Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease: Nancy Wexler, Angelina Jolie, Diabetes and Alzheimer’s  325

Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases: AIDS, Ebola, and Zika  346

Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act  367

Chapter 18 Ethical Issues in Medical Enhancement (and their effect on people with Disabilities)  392

Chapter 19 Ethical Issues in Treating Alcoholism  405

Brief Contents

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PREFACE  iii

1. Good and Bad Ethical Reasoning; Moral Theories and Principles  1 Good Reasoning in Bioethics  1

Giving Reasons  1 Universalization  2 Impartiality  3 Reasonableness  3 Civility  4

Mistakes in Ethical Reasoning  4 Slippery Slope  4 Ad Hominem (“To the Man”)  5 Tu Quoque (Pronounced “Tew-kwoh-kway”)  5 Straw Man/Red Herring  5 Post Hoc, Ergo Propter Hoc (“After This, Therefore, Because of This”)  6 Appeal to Authority  6 Appeals to Feelings and Upbringing  7 Ad Populum  7 False Dichotomy (“Either-Or” Fallacy)  7 Equivocation  7 Begging the Question  8

Ethical Theories, Principles, and Bioethics  8 Moral Relativism  8 Utilitarianism  9 Problems of Utilitarianism  10 Kantian Ethics  11 Problems of Kantian Ethics  12 The Ethics of Care  12 Virtue Ethics  13 Natural Law  13

Contents

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Contents xi

Theories of Justice  15 Libertarianism  15 Rawls’s Theory of Justice  15 Marxism  16 Four Principles of Bioethics  16 Final Comment  18

Discussion Questions  18 Notes  18

2. Requests to Die: Terminal and Nonterminal Patients  19 The Case of Elizabeth Bouvia (1983–Present)  19

The Legal Battle: Refusing Sustenance  20 The Case of Larry McAfee (1985–1995)  24 The Case of Brittany Maynard (2013–2014)  26 Background: Perspectives on Dying Well  27

Greece and Rome  27 The Bible and Religious Views  28 Philosophers on Voluntary Death  28 The Nazis and “Euthanasia”  30 Hospice and Palliative Care  32 Dying in Holland  32 Jack Kevorkian  33

Dr. Anna Pou  34 Recent Legal Decisions  37

Oregon, 1994  37 Ancient Greece and the Hippocratic Oath  38 Ethical Issues  39

The Concept of Assisted Suicide  39 Misconceptions about Suicide  39 Rationality and Competence  40 Autonomy  41 Inadequate Resources and Poor Treatment  42 Social Prejudice and Physical Disabilities  43 Is Killing Always Wrong?  45 Killing versus Letting Die  46 Relief of Suffering  47 Slippery Slopes  48 Physicians’ Roles, Cries for Help, and Compassion  50 Mistakes and Abuses  50 Cries for Help  51

Further Reading and Resources  51 Discussion Questions  52 Notes  52

3. Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo  57 The Quinlan Case  57

Pulling the Plug or Weaning from a Ventilator?  60 Substituted Judgment and Kinds of Cases  61

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The Cruzan Case  61 The Terri Schiavo Case  64

Enter Lawyers and Politicians  65 What Schiavo’s Autopsy Showed  68

Ethical Issues  69 Standards of Brain Death  69 Chances of Regaining Consciousness from Coma and PVS  70 Terri’s Chances of Re-awakening  72 Compassion and Its Interpretation  73 Religious Issues  74 Nagging Questions  74 Disability Issues  75 Some Distinctions  75 Advance Directives  77 The Schiavo Case, Bioethics and Politics  78

Further Reading and Resources  78 Discussion Questions  79 Notes  80

4. Abortion: The Trial of Kenneth Edelin  84 Kenneth Edelin’s Controversial Abortion  84 Background: Perspectives on Abortion  88

The Language of Abortion  88 Abortion and the Bible  88 The Experience of Illegal Abortions  90 1962: Sherri Finkbine  90 1968: Humanae Vitae  91 1973: Roe v. Wade  91 Abortion Statistics  92

Ethical Issues  92 Edelin’s Actions  92 Personhood  92 Personhood as a Gradient  93 The Deprivation Argument: Marquis and Quinn on Potentiality  94 Viability  95 The Argument from Marginal Cases  96 Thomson: A Limited Pro-Choice View  96 Feminist Views  97 Genetic Defects  97 God Must Want Me to Be Pregnant, or Else I Wouldn’t Be  98 A Culture of Life or a Culture of Death?  98 Abortion and Gender Selection  99 Abortion as a Three-Sided Issue  99 Antiabortion Protests and Violence  100 Live Birth Abortions and How Abortions Are Done  100 Fetal Tissue Research  101 Emergency Contraception  101 Maternal versus Fetal Rights  102

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Contents xiii

Viability  103 The Supreme Court Fine-Tunes Roe v. Wade  103 Partial Birth Abortions  104 States Restrict Abortion Clinics  104 Self-Administered Abortion by Telemedicine  105

Further Reading  106 Discussion Questions  106 Notes  106

5. Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents  109

The Octomom and the Gosselins  109 Louise Brown, the First Test Tube Baby  110

Harm to Research from Alarmist Media  112 Later Developments in Assisted Reproduction  112 Sperm and Egg Transfer  113 Freezing Gamete Material  114

Ethical Issues  115 Payment for Assisted Reproduction: Egg Donors  115 Payment for Assisted Reproduction: Adoption  115 Paid Surrogacy: The Baby M and Jaycee Cases  116 Multiple Births: Before the Octomom and Gosselins  117 Older Parents  118 Gender Selection  119 Unnatural  119 Physical Harm to Babies Created in New Ways  121 Psychological Harm to Babies Created in New Ways  122 Paradoxes about Harm and Reproduction  122 Wronging versus Harming  123 Harm by Not Knowing One’s Biological Parents?  124 Is Commercialization of Assisted Reproduction Wrong?  124 Screening for Genetic Disease: A New Eugenics?  125 Designer Babies?  126 Assisted Reproduction Worldwide  126 Time to Regulate Fertility Clinics?  127 Conclusion  128

Further Reading  128 Discussion Questions  128 Notes  129

6. Embryos, Stem Cells, and Reproductive Cloning  132 Background on Embryonic Research, Cloning, and Stem Cells  132 Ethical Issues about Reproductive Cloning  140

Valuable from Conception  140 Potential for Personhood  140 Slippery Slopes  141 Reductio ad Absurdum  141

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The Interest View  142 Embryos and Respect  142 The Opportunity Cost of Missed Research  143 My Tissue  144 Moot?  144

Reproductive Cloning  144 Reproductive Cloning: Myths about Cloned Persons  144 Against the Will of God?  145 The Right to a Unique Genetic Identity  145 Unnatural and Perverse  146 The Right to an Open Future  146

Problems with Primate Cloning  147 The Spindle Problem   148 Inequality  149 Good of the Child  150 Only Way to Have One’s Own Baby  151 Stronger Genetic Connection  152 Liberty  152 A Rawlsian Argument for Cloning and Choice  153 Links between Embryonic and Reproductive Cloning  153

Further Readings  154 Discussion Questions  154 Notes  154

7. Impaired Babies and the Americans with Disabilities Act  157 1971: The Johns Hopkins Cases  157

1970s: Pediatric Intensivists Go Public  158 Ancient History  159

1981: The Mueller Case: Conjoined Twins  159 1982: The Infant Doe Case  160

1982–1986: The Baby Doe Rules  161 1983–1984: The Baby Jane Doe Case  162

1983–1986: Baby Jane’s Case in the Courts  163 Follow-up on Baby Jane Doe  164 Media Ethics and Bias  165

Ethical Issues  166 Selfishness  166 Personal versus Public Cases  167 Abortion versus Infanticide  168 Killing versus Letting Die with Newborns  169 Personhood of Impaired Neonates  169 Kinds of Euthanasia  170 Degrees of Defect  170 Wrongful Birth versus Wrongful Life  171 1984: Legislation  172 1992: The Americans with Disabilities Act (ADA)  173

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Contents xv

The Strength of Disability Advocates  174 Conceptual Dilemma: Supporting Both Choice and Respect  174 UAB’s Support Study on Premies  175

Further Reading  175 Discussion Questions  176 Notes  176

8. Medical Research on Animals  179 The Animal Research Front and Gennarelli’s Research  179

Evaluating the Philadelphia Study  181 PETA and Edward Taub’s Research on Monkeys  181

The Law and Animal Research  183 Numbers and Kinds of Animals in Research  184 Descartes on Animal Pain  184 C. S. Lewis on Animal Pain  185 Philosophy of Mind and Ethics  186 Peter Singer on Speciesism  186 Tom Regan on Animal Rights  188 Why We Need Animals in Research: The Official View  189 Critiquing the Official View  190 Chimpanzees and Research  192

Further Reading  192 Discussion Questions  193 Notes  193

9. Medical Research on Vulnerable Populations  196 Infamous Medical Experiments  196

William Beaumont  196 Nazi Medical Research  196 Josef Mengele  197 The Nuremberg Code  198 Questionable American Research  198

The Tuskegee Study (or “Study”)  200 Nature and History of Syphilis  200 The Racial Environment  201 Development of the Tuskegee Study  202

Ethical Issues in the Tuskegee Study  205 Informed Consent and Deception  205 Racism  206 Media Coverage  206 Harm to Subjects  207 Effects on Subjects’ Families  208 Kant and Motives of Researchers  208

Other Studies Like the Tuskegee Study  209 HIV Prevention in Africa: Another Tuskegee Study?  209 The Krieger Lead Paint Study  210 1946–1948: The Guatemalan Syphilis Study  211

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xvi Contents

Financial Conflicts and Twenty-First-Century Research  212 Toward International Standards of Research Ethics  213 The Collaborative Model  214 The Death of Jesse Gelsinger  215

The Bucharest Early Intervention Project (BEIP)  216 Further Reading  217 Discussion Questions  217 Notes  217

10. Ethical Issues in First-Time Organ Surgeries  221 The First Heart Transplant  221

Fame Cometh  224 The Post-Transplant Era: “Surgery Went Nuts”  224

Barney Clark’s Artificial Heart  225 The Implant  226 Post-Clark Implants  228

Limb and Face Transplants  229 Ethical Issues in First-Time Surgeries  232

The Desire to Be First and Famous  232 Concerns about Criteria of Death  234 Quality of Life  235 Defending Surgery  236 Cosmetic versus Therapeutic Surgery  237 Expensive Rescue versus Cheap Prevention  237 Real Informed Consent?  238 Conclusion  239

Further Reading  239 Discussion Questions  239 Notes  240

11. The God Committee  243 The God Committee and Artificial Kidneys  243

Shana Alexander Publicizes the God Committee; Starts Bioethics  245 The End Stage Renal Disease Act (ESRDA)  246 The Birth of Bioethics  247 Supply and Demand of Donated Organs  247

Ethical Issues in Allocating Scarce Medical Resources  248 Social Worth  248 Personal Responsibility for Illness and Expensive Resources  248 Kant and Rescher on Just Allocation  249 Wealth, Celebrities, Justice, and Waiting Lists for Organs  250 Retransplants  252 The Rule of Rescue  253 Sickest First, UNOS, and the Rule of Rescue  254 Living Donors  255 Costs and the Medical Commons  257

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Contents xvii

Non-Heart-Beating Organ Transplantation  257 The God Committee, Again  260

Further Reading  261 Discussion Questions  261 Notes  262

12. Using One Baby for Another  264 1984: Baby Fae  264 1987: Baby Gabriel and Baby Holc  266 1992: Baby Theresa  268 1993: The Lakeberg Case: Separating Conjoined Twins  269 Ethical Issues  270

Use of Animals as Resources for Humans  270 Alternative Treatments?  271 Babies as Subjects of Research  272 Informed Consent  273 The Media  274 Therapy or Research?  275 Ethics and Terminology: Infants as “Donors”  277 Anencephalics and Brain Death  278 Saving Other Children  280 Costs and Opportunity Costs  280 Conclusion  280

Further Reading  281 Discussion Questions  281 Notes  281

13. Ethical Issues in the Treatment of Intersex and Transgender Persons  284 David Reimer  284 Intersex People  287

Congenital Adrenal Hyperplasia  288 Fetal Dex  289

Ethical Issues  290 What Is Normal and Who Defines It?  290 Secrecy in the Child’s Best Interest  290 Ending the Shame and Secrecy  291 Transgender/Intersex and Civil Rights  292 Nature or Nurture, or Both?  292 An Alternative, Conservative View  293 Ken Kipnis’s Proposals  293 Medical Exceptions  294 The Dutch Approach: Delaying Puberty  294 Conclusion  295

Further Reading  295 Discussion Questions  295 Notes  296

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xviii Contents

14. Involuntary Psychiatric Commitment and Research on People with Schizophrenia  299

The Case of Joyce Brown  299 The Legal Conflict  300 Ideology and Insanity  303 Patients’ Rights  303 Legal Victories for Psychiatric Patients  305 Deinstitutionalization  306 Violence and the Mentally Ill Homeless in the Cities  307

Ethical Issues  308 Paternalism, Autonomy, and Diminished Competence  308 Homelessness and Commitment  308 Psychiatry and Commitment  309 Suffering and Commitment: Benefit and Harm  310 Housing for the Mentally Ill as an Ethical Issue  311 Mass Shootings and the Mentally Ill  312

Ethical Issues in Research on People with Schizophrenia  312 Washout Period  312 Schizophrenia  313 Problems of Consent in Schizophrenia Research  315 Family Dilemmas  316 Drug Companies and Research on Schizophrenia  317 Researchers Defend Themselves  318 Harm to Subjects and the Kantian Ideal of Patient Care  319 Structural Critiques of Modern Psychiatric Research  319 The CATIE Study  320

Further Reading  321 Discussion Questions  321 Notes  322

15. Ethical Issues in Pre-Symptomatic Testing for Genetic Disease: Nancy Wexler, Angelina Jolie, Diabetes and Alzheimer’s  325

Case 1: Angelina Jolie and Genetic Testing for Cancer  325 Background: Basic Genetics  326 Case 2: Nancy Wexler and Huntington’s Disease  326 The Eugenics Movement  328 Case 3: Testing for Diabetes  329 Case 4: Testing for Alzheimer’s Disease  330 Ethical Issues  331

Preventing Disease  331 Testing as Self-Interest  332 Testing Only to Hear Good News  333 Testing as a Duty to One’s Family  334 Testing One’s Family by Testing Oneself  335 Personal Responsibility for Disease  335 Testing and Sick Identities  336

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Preventing Suicide by Not Knowing  337 Testing Only with Good Counseling  338 Genetic Testing and Insurance  338 Premature Announcements and Oversimplifications  339 Caveat Emptor: Making Money from Genetic Testing  339 Preventing Genetic Disease  340 Embryos, Genetics, and CRISPR  342

Further Reading  342 Discussion Questions  343 Notes  343

16. Ethical Issues in Stopping the Global Spread of Infectious Diseases: AIDS, Ebola, and Zika  346

Background: Epidemics, Plagues, and AIDS  346 A Brief History of AIDS  347 AIDS and Ideology  348 Transmission of HIV and Testing for HIV  350

Kimberly Bergalis’s Case  351 Two Ethical Issues in Stopping the Spread of AIDS  352

Homosexuality  352 HIV Exceptionalism  353

Stopping the Worldwide Spread Of HIV: Four Views  353 Educational Prevention  355 Feminism  355 Triage  357 Structuralism  357 Replies and Rebuttals  358 Progress  361 Ethical Issues in Preparing for Future Pandemics  362

Further Reading  363 Discussion Questions  364 Notes  364

17. Ethical Issues of the Patient Protection and Affordable Care Act  367 Rosalyn Schwartz  367

Universal Medical Coverage  368 1962 to Present: Canada  368 The National Health Service in England  369 The American Medical System: 1962–2012  369 1965: Medicare Begins  370 1965: Medicaid Begins  370 1997: CHIP  371 Tricare and VA Hospitals  371 1985: COBRA  372 1986: EMTALA  372 1996: HIPAA  372 1962–2012: Coverage at Work through Private Plans  372

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xx Contents

Blue Cross/Blue Shield and Kinds of Ratings  373 Oregon, Vermont, and Massachusetts Cover Everyone  375

2010: The Patient Protection and Affordable Care Act  376 For and Against the ACA  377

Opposing the ACA #1: Illegal Immigrants  377 Favoring the ACA #1: Illegal Immigrants  378 Favoring the ACA #2: Greater Efficiency  378 Opposing the ACA #2: Federal Bureaucracy Is Inefficient  379 Favoring the ACA #3: Making Medicine Rational  380 Opposing the ACA #3: Government Cannot Make Medical Finance Rational  380 Opposing the ACA #4: Health Care Is Not a Right  381 Favoring the ACA #4: Minimal Health Care Is a Right  381 Opposing the ACA #5: Health Care Is Not a Right  383 Favoring the ACA #5: Costs Can Be Controlled  385 Opposing the ACA #6: Intergenerational Injustice  386 Favoring the ACA #6: No Intergenerational Injustice  387 Update: Six Years of the Patient Protection and Affordable Care Act  387

Further Reading  389 Discussion Questions  389 Notes  389

18. Ethical Issues in Medical Enhancement (and their effect on people with Disabilities)  392

Famous Cases of Enhancement  392 Oscar Pistorius and his Cheetahs  392 Tess and Prozac  392 Cycling and Doping  393 Ritalin, Adderall, and ADHD  393 Personal Body Shaping and Surgery  393

Ethical Issues of Medical Enhancement  394 What Counts as an Enhancement?  394 Positional Advantage  394 An Arms Race  395 End Secrecy; Legalize Enhancements  395 Inauthentic  396 Cheating  396 Not So Dangerous  398 Bad Effects of Legalization  400 The Role of Physicians  400 Disability and Enhancements  400 Conclusions  402

Further Reading  402 Discussion Questions  403 Notes  403

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Contents xxi

19. Ethical Issues in Treating Alcoholism  405 The Case of Ernie Crowfeather  405

Free Will  408 Is Alcoholism a Disease?  409 Sociologists on Alcoholism  410 Neuroscience on Alcoholism and Addiction  411 Geneticists on Alcoholism  412 Kant on Human Dignity, Free Will, and Alcoholism  413 Kant’s Critique of the Disease Model  414 Fingarette’s Research  416 Harm Reduction versus Moralism in Medicine  417 Compromises  418 Conclusion  419

Discussion questions  420 Further Reading  420 Notes  420

NAME INDEX  I-1

SUBJECT INDEX  I-5

BIOETHICS BOWL DEBATE TOPICS  B-1

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GOOD REASONING IN BIOETHICS

Giving Reasons

It is important to give good reasons for a position in ethics. More globally, giving reasons partly explains what it means to justify a position in ethics. Justification is a complex affair, but it is more than saying “I feel this” or “I was raised that way” or “Most people think so.”

First, the reason given must be relevant to the position. For example, in discuss- ing whether humans should be created by cloning, Smith might argue that origi- nating people this way would not create zombies but just create delayed, identical twins. In arguing this way, Smith did two things: first, attacked a relevant miscon- ception about human cloning, and, second, offered an insight, comparing creation by cloning to the process that occurs when human embryos twin. In this second comment, Smith is saying that cloning is really not unnatural. Allegedly people think that the unnaturalness of cloning is a good reason to object to it.

Besides relevance, good reasons often provide evidence for a position. Suppose Martha favors in vitro fertilization (IVF) and someone objects that IVF produces defective babies. Martha then replies that the rate of gene-linked defects in IVF babies is only a bit higher than for all babies. (Chapter 5 discusses this claim.) That fact is good evidence, and hence a good reason.

In arguing about abortion, an antiabortionist might claim as a premise that a 12-week-old embryo feels pain, and therefore, aborting such an embryo is wrong. Then someone who is pro-choice might counter that the neural system is undevel- oped at 12 weeks, so no one who can feel pain exists. The antiabortionist counters that “pain is pain,” whether the being is a shrimp, rat, or human embryo. At this point, claims will continue to be exchanged back-and-forth, but notice that all these claims are evidence for and against the premise that the embryo feels pain at 12 weeks and so constitute good reasons.

C H A P T E R 1

Good and Bad Ethical Reasoning; Moral Theories

and Principles

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Ideally, good reasons support a conclusion as an argument, that is, not a dispute but a justified conclusion. Sometimes in an argument, a key premise is missing or assumed, but it needs to be made explicit. This missing premise is called an enthymeme. In the preceding argument, this premise is, “We should not cause pain to embryos.” Without this premise, the argument doesn’t work.

Logic is the study of the formal properties of arguments. It distinguishes between truth and falsehood, which govern how premises correspond or not to the world, and validity, which concerns the formal relations between premises and conclusion. In logic, an argument with true premises and a valid structure is called sound.

Another kind of good reason in bioethics appeals not to evidence but to a principle. In the case where not everyone can get a scarce lifesaving machine, ques- tions arise about how to choose who is saved. In 1962, distributing dialysis machines raised just such a problem. One proposal was that, “Everyone should have an equal chance to get a machine,” and to effect this, some advocated a lottery to select recipients. Here, the principle of equal consideration counted as a good reason.

Consider also the debate in bioethics as to whether an alcoholic should be given a liver transplant, a practice that some critics believe wastes a good organ. (This is dis- cussed in detail in Chapter 11.) A proponent of including alcoholics as recipients could argue from the principle of equal consideration that everyone should be able to get a new liver, so past behavior should not matter. An opponent might cite different princi- ples such as, “Good organs should not be wasted” and “People must be held responsi- ble for their bad behavior.” In debating whether alcoholics should get livers, these principles function as good reasons for and against the inclusion of alcoholics.

Finally, good reasons should not contradict each other but should be logically consistent. For example, if someone favors not making human cloning illegal by federal law, he might argue that it is not the business of federal government to tell citizens how to produce new humans. He might cite Aldous Huxley’s novel Brave New World as an example of what could go wrong when government controls repro- duction. To be consistent, he should favor keeping government out of all human reproductive decisions, including those about assisted reproduction, birth control, abortion, adoption, and whether to have children.

Consistency in ethics also entails not making exceptions for one’s own case. For example, with brain death and organ transplants, one would not endorse bend- ing the traditional criteria of brain death to generate more organs unless one would be willing to oneself be declared brain-dead by bending these rules. Or more com- monly, we cannot consistently urge, “Everyone should volunteer to help the sick and needy, but I don’t have the time to do so.”

Universalization

Most of us have been ethically challenged at some point in our lives by someone who asked us, “What if everyone did that?” Such a challenge assumes that the rules of ethics must be for everyone.

The idea of universalization often comes up in moral decisions. In bioethics, a controversy exists as to whether normal people with two kidneys should be encour- aged to altruistically donate one so that someone on lifelong dialysis could receive a kidney and live a normal life. Here the question, “What if everyone did that?”

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has a good answer: Because most people will need only one kidney for their life, if everyone agreed to donate a kidney (if they matched, were in good health, etc.), then all kinds of good things would occur. In short, the practice seems morally justified. Another way of putting this is that good reasons exist for altruistic dona- tion of kidneys.

The twentieth-century ethicist R. M. Hare states this idea about universalization nicely:

Universalizability means that, by saying “I ought,” he commits himself to agreeing that anybody ought who is in just those circumstances. If I say “I ought, but there is someone else in exactly the same circumstances, doing it to someone who is just like the person I should be doing it to, but he ought not to do it,” then logically eyebrows will be raised; it is logically inconsistent to say, of two exactly similar peo- ple in exactly similar situations, that the first ought to do something and the second ought not.1

Impartiality

One of the most important ideas in ethics is that we should not make special rules for our own case, in other words, that we should not be partial to our own interests. Similarly, we should not be partial to those in our own gender, ethnicity, or age group. Instead we should be impartial, treating everyone the same.

Just how impartial we should be is an important question in ethical theory. Is it permissible to put the boundary of impartiality at our national borders, or should ethics be universal? For example, in research bioethics, should there be one standard for informed consent in developed countries and another in developing countries?

Over time, the tendency in ethics has been to widen the scope of impartiality. Thus in research bioethics today, there has been a movement to not have a double standard for developed and developing countries but to treat both the same. (This is discussed in Chapter 9.)

One important idea here in reasoning concerns onus of proof. Suppose someone wants to apply a rule only to his own group, say, by arguing that cancer specialists, to encourage hope, should not always tell patients the truth about their diagnosis. Because it is now a norm in medicine to tell the truth and because most people want to know the truth, the “onus” or burden of truth for nondisclosure should be on cancer specialists. What this means is that this specialist needs especially good reasons for his actions and if he cannot present such good reasons, his position is unjustified.

Reasonableness

It is hard to exactly characterize what is meant by being reasonable in ethics, but it is certainly composed of being open to other points of view. It is unlikely that the way any of us was raised—in, say, a Southern culture as a Baptist—is the only path to the truth about the universe. People raised in Jewish, Hindu, or Muslim cultures might also have insights into the universe, as might people raised in non- religious, secular households. Being open to other viewpoints is good for everyone, at least for people who share an interest in truth.

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The same holds for other viewpoints on positions in bioethics. Most of us bring to these issues a general orientation that predisposes us to a certain position. For example, we might come from a culture that frowns on drinking alcohol and thus condemns rewarding alcoholics with liver transplants. But it is important to con- sider other points of view, for example, the theory that alcoholism is a disease over which drinkers have no control. If that theory is correct, then alcoholics should be blamed no more than people who get endocarditis from a virus.

Another quality of reasonableness is being fair-minded. This quality of intellec- tual life differs from being open-minded because it goes further and includes a willingness to try to see the best in the reasoning of other people. The opposite of this is the fallacy of attacking a straw man, where the attacker is not fair, that is, does not attack the best version of his opponent’s argument but instead attacks a weak “straw man” who is easy to knock down.

Being unfair tends to generate hostility rather than goodwill. Being fair-minded includes a willingness to admit problems with one’s own position, to admit good objec- tions to it, and to admit that—given enough good reasons—one could even change one’s mind. Most important, being fair-minded in discussing issues means trying to consider the best argument on the opposing side. Sometimes this can be expressed by the trial balloon, “If I understand what you are saying, you mean that . . . .” Such a tactic gives the opponent a chance to refine or modulate his or her position and engenders a spirit of mutual work toward discovering the best answer.

Civility

In the United States in the past decades, a tone of incivility has permeated debates in public policy, including those in bioethics. This is unfortunate. Because of ada- mant divisions between political parties, between social conservatives and social liberals, and between liberal and conservative bioethicists, the tone of debate has sometimes descended to scoring cheap points, to demagoguery, to painting one’s opponents as spawn of the Devil, and, in general, to being nasty.

Being civil in discussions in bioethics improves everyone. Being uncivil degrades us all, both in class, as citizens, and as future professionals. This is juvenile, unprofessional behavior, and it is sad to see so many talk shows on cable television promoting it (seeing people argue badly seems to promote good ratings). It is important to realize that one can argue fairly and rationally without being mean and without attacking opponents personally. Some of the fallacies described in the following section involve cheap tricks in such mean-spirited attacks.

MISTAKES IN ETHICAL REASONING

Slippery Slope

Often in bioethics, champions of the status quo argue that a small change in a current medical practice will lead to terrible results. Although the small change itself is not so bad, because there is no logical place to draw the line or because something horrible is unleashed in human nature, soon bad things will occur. This

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is basically the idea of the slippery slope, which is one of the most famous ideas in ethics. It is also called the “thin edge of the wedge”—or simply the “wedge”— argument. Claims about it in bioethics figure prominently in debates about physician-assisted dying, cloning, abortion, standards of brain death, and assisted reproduction.

Slippery slope arguments metaphorically see society as teetering like a ball perched atop a steep, greased slope and leaning downward, braced only by wedges on the ground, preventing it from descending. Our basic moral principles are the wedges.

For example, someone might invoke the slippery slope by claiming, “If we do not ban students taking the MCAT from using Adderall or Ritalin, soon there will be an arms race of mental enhancements by test-takers.”

The counterargument to the slippery slope is multifaceted: First, we can make a small change without going all the way down the slope. If we see that a change in a medical practice is bad, we can undo it. Second, not all change is bad; how else would progress occur? Finally, one person’s “slope” is another’s “ascent.” Inte- gration and equal voting rights may have seemed like the pit to white male suprem- acists but not to everyone else.

Ad Hominem (“To the Man”)

Generally, it’s a mistake to make a personal attack on someone else, in part because you may not know an opponent well. Suppose Gina argues for the moral superior- ity of suicide for terminally ill patients because it gives patients control over their lives, because it is justified by the principle of autonomy, and because, after all, “it’s the patient’s body, not the doctor’s.” Her reasons are not affected by whether she is terminally ill. An ad hominem fallacy would be committed if someone said, “I’ll bet you would change your mind if you were dying.” This puts the focus incorrectly on her personal life and not on the reasons she gave for her position.

Tu Quoque (Pronounced “Tew-kwoh-kway”)

Literally, “You, too.” The mistaken idea here is that two wrongs make a right. First pharmacist: “You made an exception last week and let a 12-year-old girl buy emer- gency contraception when the law says she must be 14.” Second pharmacist: “You made a similar exception for your 13-year-old niece.”

“You, too!” resonates in ethics because when someone confronts us with wrong- doing, we feel less ashamed if the other person has also done it. But saying some- one else also acted wrongly doesn’t justify the first wrong.

Straw Man/Red Herring

This occurs when someone brings up irrelevant issues. The fallacy is committed when someone focuses on a different issue than the one originally advocated, because the different issue is easier to refute. Example: “We should reject Obamacare because it will lead to death panels where people are forced to have advance direc- tives before they know they are dying or know what their options are.”

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Getting universal coverage for medical care does not entail death panels, but death panels sound scary and are easier to attack than universal medical coverage.

It is also not fair-minded to attack a position that one’s opponent does not hold. Doing so is destructive, not constructive, to rational debate in bioethics.

The red herring fallacy is a bit different from straw man and consists of dis- tracting an opponent from the real argument by raising an irrelevant, but associ- ated, issue. (In hunting with dogs, the red herring across the trail of the tracked animal puts the dogs on the wrong path.) So in discussing abortion and whether a fetus is a person, someone might object, “More African-Americans have abortions as a percentage than white Americans.” Obviously, raising race as an issue is always potentially controversial and, here, potentially distracting. The most important point is that the statement bears no relevance on whether the fetus is a person. Both, therefore, are fallacies of relevance.

Post Hoc, Ergo Propter Hoc (“After This, Therefore, Because of This”)

The mistake in reasoning here confuses temporal priority with causality. An exam- ple: “In the 1960s, women started working outside the home, and a few years later, rates of divorce soared. Therefore, if we want to preserve the family, we should prevent women from working outside the home.”

Just because one event occurred before another does not mean the first caused the second. Why? Because when you think about it, everything in history came before X. Consider an example from the best-selling Freakonomics: “Abortion was legalized in 1973, and 15 years later, the crime rates went down. So if you want to lower rates of crime in the future, encourage abortions.”

The problem here is the supposed causal links between abortion and crime rates. What might be true is that with more abortions in certain neighborhoods, there were fewer people 15 years later or fewer people between ages 15 and 25 who could commit crimes. But more birth control pills might have had the same effect. Also, it may be that better education and counseling started at the same time and made a big difference.

Appeal to Authority

Reasons and arguments justify a position, not just any authority. Moreover, when an authority is cited, it must be relevant to the topic in question.

Harvard professor E. O. Wilson is probably the world’s foremost authority on ants. When Wilson wrote Sociobiology, he claimed that, in certain aspects, organi- zations of ants and humans resembled each other. Quoting Wilson about sociobi- ology is not erroneous but appropriate.

On the other hand, Wilson may have opinions about rock bands, but quoting these opinions is irrelevant to whether a band is good. Wilson’s authority on ants is not relevant to rock bands.

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Appeals to Feelings and Upbringing

How you feel about something or what you were brought up to believe doesn’t count as a reason for it. Example: “I was brought up to believe that men were the hunters and women were the hunted, so a woman should wait until a man finds her and asks her out.”

Here is another example: “I was brought up to think being gay was repulsive, so I’ve got to feel that way.” In this claim, we could substitute for “being gay” any number of other qualities, such as religion, race, ethnicity, or looks.

Obviously, you can be brought up in the wrong way, and as a result, or for other reasons, have irrational feelings as an adult. Again, reasons justify a position in ethics, not feelings or upbringing.

Ad Populum

”Everybody does it.” Just because everyone does something does not justify it or make it ethical. Most physicians may take free gifts from drug representatives who push expensive, brand name drugs over generics, but that doesn’t mean it’s right to take such gifts. The self-serving claim, “All the other physicians do it. Why shouldn’t I take such gifts, too?” commits this fallacy.

False Dichotomy (“Either-Or” Fallacy)

This fallacy is a version of simplistic thinking. “Either you’re a liar or a completely honest man.” The opponent presents an issue as if there are only two extreme, opposed alternatives, with nothing in between—black, white, or gray. “Either we ban cell phones, or people will use them while driving.” Consider also: “Either we’re all nuts, or we’re all lucid.”

Another example: “Either God exists, or everything is permitted.” Counterar- gument: Even if there’s no God, good people will still act virtuously. If there is a God and people only act virtuously to please him, maybe they aren’t virtuous any- way because only people who do the right thing because it is right are really virtuous.

Equivocation

We should be careful to define key terms and not let key words contain many meanings. So we should clarify equivocal or ambiguous words with more than one meaning. Example: “Sex offenders should only be allowed to live in certain areas, so Alan Jones should not live here.”

But who is a “sex offender”? It turns out that as an 18-year-old Atlanta teenager, Alan, had consenting sex with a girl who was one month shy of 18, so technically he committed sodomy and was legally a sex offender in Georgia. But more com- monly, the phrase is reserved for people who have nonconsensual sex with a minor with a far greater age difference.

In bioethics, one of the most important terms is “person,” where this evaluative term contrasts with “human” or mere biological membership in the human species.

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Some people consider eight-day-old human embryos to be persons, and hence, intrauterine devices (IUDs), which prevent embryos from implanting, are instru- ments of murder. Some people believe that victims of late-stage Alzheimer’s disease are no longer persons, especially when they cannot recognize their children or remember how to take a shower. On the expansionist side of personhood, some bioethicists such as Peter Singer would include chimpanzees and great apes.

What is important in good reasoning is to define key terms such as “person.” Sometimes, achieving clarity about such a definition is the major task at hand. Certainly in bioethics, philosophers, bioethicists, and theologians have penned untold volumes in trying to clarify the concept of personhood.

Begging the Question

Begging the question occurs when a conclusion that requires good reasons is assumed without argument, so “begging” here means “assuming without proof.” The end of the discussion in the previous section mentioned that Peter Singer considers adult chimpanzees to be persons. Someone might retort, “No. Only humans can be persons.” Singer would reply that such a stance begs the question at hand, namely, whether only humans can be persons. That crucial point cannot just be assumed at the start but must be backed up with good reasons. Indeed, that is the whole purpose of justification here.

Question-begging mistakes are not always obvious because synonyms may dis- guise the mistake. “I think everyone from the South is a racist.” Why? “Because everyone who lives in states below the Mason-Dixon line is racist.” The person has just said the same thing twice, both times assuming what should be argued for.

In bioethics and the abortion debate, an example of begging the question would be if an antiabortionist began a debate by stating, “Abortion is murder.” This state- ment begs at least two questions: that killing a fetus or embryo is the same as killing a full person and that the kind of killing in abortion is, like murder, an unjustified killing. (These claims are discussed in Chapter 4.)

ETHICAL THEORIES, PRINCIPLES, AND BIOETHICS

In this section, some classic ethical theories are surveyed with emphasis on bioethics.

Moral Relativism

Moral relativism is the theory that no universal truths exist across cultures but instead, what is right or wrong must be defined in each society. Inside a particular culture, some things are right, others wrong, but nothing is wrong across all.

This theory, popular in anthropology, initially seems attractive when students study various peoples around the world and different times in history. But it also has flaws, and medicine is one place where such flaws can be exhibited.

Consider that medicine under the Nazi regime in Germany was anti-Semitic, racist, and contemptuous of people with disabilities. As a result, physicians led the

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movement to “cleanse” the Aryan race of undesirable, “useless eaters,” leading to the Holocaust and deaths of 6 million people. As described in Chapter 9, Nazi physicians also conducted horrible medical experiments on captives.

A moral relativist must accept the view that we cannot condemn Nazi physi- cians for such actions. The trials at Nuremberg were a farce. Inside Nazi culture, the Holocaust was not wrong but right. Only from an external, objective standard of morality can such actions be condemned.

Utilitarianism

Utilitarianism was developed by philosopher-activists Jeremy Bentham and John Stuart Mill in late-eighteenth-century England. It holds that right acts produce the greatest amount of good for the greatest number of beings, which it called “utility.” Its teachings can be summed up in four basic tenets:

1. Consequentialism. Consequences count, not motives or intentions. 2. Maximization. The number of beings affected by a consequence matters; the

more beings affected, the more important the result. 3. A theory of value (or of “good”). A definition of what counts as good

consequences. 4. A scope-of-morality premise. Each being’s happiness is to count as one unit of

happiness up to a certain boundary.

For utilitarians, right acts then contain four aspects, the greatest amount of good consequences for the greatest number of beings of a certain kind.

One distinctive aspect of utilitarianism is that it is wholly secular and posits no God or gods as the sources of morality. In this sense, it is naturalistic. In empha- sizing consequences, it contrasts with deontology, such as Kantian ethics, which emphasizes motives, and virtue ethics, which emphasizes traits of character.

Each of the four tenets can be controversial. In reverse order, consider tenet 4, the scope of morality or who has “standing” in moral considerations. Bentham emphasized that the meaning of tenet 4 was whether a being could suffer, not whether it was human or animal. As such, many utilitarians include animals in their calculations of the “greatest number.” This makes a big difference to research by psychologists and physiologists on animals. If an ape is 90 percent a human in interests and value and utilitarianism calculates utility this way, then very few exper- iments on primates will be morally justified.

Some utilitarian thinkers such as Peter Singer take a large view of moral stand- ing and hold that every being’s happiness on the planet matters, not just citizens of America and not just humans. As such, they are more likely in bioethics to emphasize what benefits the poor people of the world.

Virtue ethicists and Kantians (discussed later) regard a physician’s motives as a sign of his character. The poor patient without medical coverage doesn’t care whether the physician volunteering to treat him without payment is doing it from a sense of duty or from guilt or to make others think him good. What matters is that the physician is there for him. Utilitarians think motives count only insofar as they tend to produce the greatest good.

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In medicine, does it matter whether a physician listens because she really cares about patients or because she’s found that having satisfied patients is an effective way to maximize income? A utilitarian might argue that if she is talented, whether she really cares about her patients matters little; in either case, her behavior pro- duces good consequences to real people. For a larger view, she may do more good bringing clean water to a village than being a cameo medical missionary.

On the other hand, for virtue ethicists and Kantians, character and motives, not results, are everything. Good people sometimes fail to achieve good results, but if their motives are pure, they can’t be faulted for such failures. Do we really want a physician who is faking compassion?

Utilitarianism also contains a theory of value (tenet 3), that is, a theory of harmful and good consequences. Utilitarianism is associated with, but not the same as, the harm reduction movement in medicine, which focuses not on changing “immoral” behaviors such as IV-drug usage, prostitution, and gambling but on the harmful results associated with them.

The most important claim of utilitarianism is that consequences matter in deter- mining morality (tenet 1). Medicine can certainly live with that. When sick people see a physician, they want results, not just good intentions. And even other ethical theories, such as Kantian ethics and virtue theory, seem always to be indirectly appealing to consequences in calculating right actions.

Problems of Utilitarianism

Maximization can be beneficial to utilitarianism, organizing it and giving it direc- tion. If a surgeon can take a liver, a heart, skin, eyes, and bone marrow from a brain-dead cadaver and give all to one patient or something to six, it is obvious that it’s better to save six than one.

In the trolley problem, a runaway trolley careening down a steep hill will hit six people unless bystander Jones flips a lever to switch it to the only side track, where it will kill only one person. By flipping the switch, however, Jones does something active, changing fate, but doing what maximization demands (in this case, maxi- mizing utility by saving the most lives).

In medicine, maximization and utilitarianism are often applied in public health ethics and situations of triage. Triage allocates scarce resources during emergencies when not all will live. Because consequences count, utilitarian physicians should not treat each patient equally but should focus on those who can be benefited. Rigorous application of this principle gives utilitarianism its famous hard edge: Physicians should abandon those who will die anyway and, just as ruthlessly, abandon those who will live anyway. Physicians at the scene should help only those who waver between life and death and for whom intervention can tilt the balance toward life. The goal is always to save the maximal number of lives.

In these catastrophic situations, such as after a terrorist attack or tsunami, what other theory could help? Similarly in medical research, such as that focused on cur- ing cancer, researchers need to focus on the big picture, which is removing the scourge of cancer from tens of millions of lives. Yes, individual cancer patients may suffer in experimental trials of new drugs, but the goal is to help the huge numbers of cancer victims of the future.

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Maximization (tenet 2) can get utilitarians into trouble. Wouldn’t utilitarianism be willing to violate the traditional sanctity-of-life principle to save many people? Wouldn’t utilitarianism permit the sacrifice of an innocent, healthy person to trans- fer his organs to four patients who needed them to live?2 Aren’t four people alive better than one? If consequences and numbers define morality, what’s wrong with doing so? Yet, it’s wrong to chop up a patient like this.

Kantian Ethics

Immanuel Kant (1724–1804) lived during the Enlightenment, and he believed in the power of reason to solve human problems. The distinctive elements of Kantian ethics are these:

1. Ethics is not a matter of consequences but of duty. Why an act is done is more important than its results. Specifically, an act must be done from the right motive, and the right motive is the desire to do one’s duty. Indeed, there is only one correct motive in Kantian ethics and that is the desire to be a good person, to do what is right, to have a “pure will.”

Kant’s ethics celebrates duty (and is therefore called deontological, from deontos, duty), because it emphasizes not having the right desires or feelings but acting from obligation. We should praise only medical acts done from duty, not from compassion. For Kant, the correct motive for treating a patient well is not because a physician feels like doing so but because it is the right thing to do. When we act morally, Kant says, reason must tell feelings what to do, not the other way around, as in popular culture.

Kant says the only thing valuable in the world is a good will, the trait of character indicating a willingness to choose the right act, simply because it’s right. But how do we know what is right? What is our duty? Kant gives two formulations.

2. A right act has a maxim that is universalizable. An act is right if one can will its maxim or rule to be acted on by all others. “Lying to get out of keeping a promise” cannot be so willed because if everyone acted this way, promise- keeping would mean nothing.

3. A right act always treats other humans as “ends-in-themselves,” never as a “mere means.” To treat another person as an “end in himself” is to treat him as having absolute, infinite moral worth, not relative worth. His welfare cannot be sacri- ficed to the good of others or to one’s own desires. So parents cannot create one child to help another, as with savior siblings.

Consider the nurse who discovers a physician failed to tell patient Ruth an important fact years ago. Now it is too late for the truth to help Ruth. A consequen- tialist might argue that the nurse should not tell because Ruth won’t benefit. But for Kant, Ruth must be told the truth. The only universalizable rule is, “Always tell patients the truth.” Such a rule is the basis of trust and of treating patients as “ends in themselves.” If the nurse were the patient, she would want to know. The nurse may feel that she shouldn’t reveal the truth but reason will reveal her real duty.

4. People are free only when they act rationally. Kant would agree that much of how we act is governed by our emotions as well as our biology. But controversially,

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Kant denies that we act morally when we do the right thing because we are accustomed to it, because it feels right, or because our society favors the act. We act morally only when we understand why certain rules are right and then freely choose to bind our actions to them. Kant calls the capacity to act this way autonomy. For him, it gives humans higher worth and dignity than animals.

It follows for Kant that one should not treat one’s own person as a thing. That means one cannot think of oneself as a mechanical machine, subject only to the laws of chemistry and physics. So, people are more than their bodies. Hence, for Kant, alcoholism is not a disease of a body but a pattern of free choices.

Problems of Kantian Ethics

Kantian ethics has several problems. First, it fails to tell us how to resolve conflicts between competing maxims. Because most cases in bioethics involve many compet- ing interests of different people, there will be competing, universalizable maxims. In the preceding case about failing to tell a patient the truth, one maxim is, “Always tell the truth” but another is, “Be kind and don’t inflict useless pain.”

Second, the ideal of treating each person as if he has infinite value is not always practical: It does not tell us how to deliberate about trade-offs when some humans will die in triage situations. Nor does it make sense in medicine when spending $5 million on one patient may mean spending little on the next 10 patients.

Third, some of Kant’s ideas appear out-of-date. Why shouldn’t Kantians accept an altruistic kidney donation? Why isn’t everyone better-off under such a maxim, and why isn’t such a choice evidence of our best, free, rational natures?

Nevertheless, Kant provides useful insights to medical ethics. He would favor using a lottery to distribute a lifesaving but scarce new drug. His emphasis on people as “ends in themselves” explains the outrage that people have felt when learning of research done by Nazi physicians. Finally, Kantian autonomy explains why informed consent grounds participation in medical experiments. Also, when combined with the political autonomy of citizens of democracies, Kantian autonomy sets the stage for modern medical ethics.

The Ethics of Care

During the 1980s, feminist psychologists and philosophers questioned whether tra- ditional ethical theories were too male-oriented, too abstract, too intellectual, and too false to the experience of women, who valued trust, cooperation, nurturing, and bonding.

Carol Gilligan claimed that women analyze ethical dilemmas differently than men. Subsequent feminist theorists, who created the often-called Ethics of Care theory, explored family relationships by promoting “female” virtues of caring, nurturing, trust, intimate friendship, and love. Rather than focusing on atomistic individuals, the theory emphasized the family, which too often drops out of bioethical analysis. Overall, the Ethics of Care may be a useful corrective to abstract, semi- legalistic concepts, such as rights.

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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 13

In criticism, the Ethics of Care does not tell us how to treat people we do not know or, worse, people we do not care about. This is important because physicians today often meet patients as strangers. Nor does it tell us how to resolve conflicts among people we care about, such as when a physician is torn between checking on a patient and being with his own daughter at childbirth.

Other feminists believe that only traditional gender roles make these virtues female and that the Ethics of Care reinforces stereotypes. As one wit said, “The ethics of care screams, ‘Mommy!’” It should also be emphasized that female bioeth- icists often address concerns far beyond the family or their personal network of caring, such as the plight of HIV-infected women around the world.

Virtue Ethics

In ancient Greek medicine, to know what made a good physician, we needed to know the physician’s role. If that role was to heal the sick, then it required virtues of compassion, knowledge of healing, and skill in human relations. Virtues, then, were skills in performing a role well.

Socrates transcended role-defined ethics and asked about the virtues of a good person. Ancient Greek philosophers believed that the four great human excellences were human courage, temperance, wisdom, and justice, known as the cardinal virtues.

So we should not only ask, “What virtues should a good physician possess?” but also, “What virtues should a good person possess who happens to work as a physician?”

Role-based ethics suffers problems when roles conflict or the wider society calls into question whether the role has been properly defined. Greek virtues celebrated Hellenistic culture, but this culture was blind to being built on slavery. Role-based ethics still underlies the apprentice system in medical education, where medical students gradually assume more responsibility.

Natural Law

When Rome conquered Greece, Greek culture in turn captured Rome. Rome’s Stoic philosophers elevated one aspect of the Greek worldview to a higher level. Rules for human beings, they argued, were so embedded in the texture of the world that they were law for humans. These laws came to be known as “natural laws.” They were apprehended by unaided reason, without Scripture or divine revelation.

The notion of a lawgiver lies behind natural law. In the eleventh century, Thomas Aquinas synthesized Aristotelianism with Christian ideas to create his Thomistic worldview. Aquinas then made explicit the connection between God and natural laws: A rational God made the world work rationally and gave humans reason to discover these laws. So, studying Thomistic ethics is a rational process of discovering those rules. Correct descriptions of the world would yield correct pre- scriptions about how to act. To act rationally is to act morally, which in turn is to act in accordance with natural law.

These rules commanded humans to resist their feelings. St. Augustine taught in the fourth century C.E. that sin contaminated human feeling: as such, lust, sloth,

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avarice, and pride infected humans. This was in stunning contrast to modern times; for Aquinas, ethics was not about examining one’s feelings but about following the natural rules laid down by God.

Natural law condemns homosexuality. Aquinas believed that God made two sexes for procreation and that it was natural and rational for a man and woman to mate to have children. On the other hand, for two people of the same gender to have sex was contrary to natural law, and hence immoral.

One problem with natural law theory is that what is considered against natural law may vary over the centuries. Many today do not consider homosexuality to be unnatural, especially because it has been practiced since the beginning of human history and because some great cultures, such as the ancient Greeks, celebrated it as ideal.

For natural law theory, consider marriage and children. Natural law regards loving, sexual relations between married man and wife as natural and good, and the natural product of such sex is children. But many forms of assisted reproduction today—IVF, egg transfer, surrogate mothers, and artificial insemination of donor sperm—violate natural law because they don’t involve sex between husbands and wives.

Natural law in bioethics tends to conflate “natural” with “primitive” or “tradi- tional,” and hence, it has no way to accommodate change or progress, for example, in helping infertile couples with assisted reproduction.

Natural law theory bequeathed to bioethics the famous doctrine of double effect. This doctrine holds that if an action had two effects, one good and the other evil, the evil effect was morally permitted (1) if the action was good in itself or not evil, (2) if the good followed as immediately from the cause as did the evil effect, (3) if only the good effect was intended, and (4) if there was as important a reason for performing the action as for allowing the evil effect.

This doctrine justifies an exception to abortions with an ectopic pregnancy (an embryo growing in a fallopian tube). This doctrine allows abortions only if the direct intention was to save the life of the mother and if the other conditions listed are followed.

This doctrine forbids physicians from assisting in executions, since it forbids an intention to kill. On the other hand, it allows increasing dosages of morphine for terminal patients, so long as the intention is to relieve suffering, not to kill the patient. (This idea entered the case of Anna Pou, the New Orleans physician caught by Hurricane Katrina—see Chapter 2).

The principle of totality also derives from natural law. It says that the human body may be changed only to ensure the proper functioning of that body. The underlying idea is that one’s body is not something that one owns but that one holds in trust for God: “The body is the temple of the Lord.” So a gangrenous leg may be amputated or a cancerous breast removed, because these diseases threaten the body’s overall health.

According to this principle, we are given our bodies as they are for a reason and we should not change our bodies for frivolous reasons. God wisely created human bodies as they are, and humans shouldn’t meddle with these results.

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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 15

THEORIES OF JUSTICE

Many theories of justice exist. Most divide into retributive (about punishment) and distributive (about how to allocate benefits and burdens). Here, three main theories of distributive justice are discussed.

Libertarianism

Libertarians favor government for defense and for limited public works, perhaps not even including national parks or a public interstate road system (we could have private toll roads). They disfavor government programs such as Medicare, Medicaid, disability insurance, food stamps, and welfare. Libertarians oppose forced taxation by the government, especially when it redistributes property and income from rich to poor. They champion the property rights of the status quo but tend to be silent about how those enjoying the status quo acquired their property. Harvard philoso- pher Robert Nozick saw forced taxation as equivalent to forced labor.

Accordingly, Libertarians oppose mandatory FICA taxes on workers’ pay and taxes for Medicare and for the Hospital Insurance Trust Fund. Even though federal programs such as Medicare have made American physicians rich, Libertarian physicians would rather have no government control over their business. In a Libertarian society, physicians would be reimbursed only in cash.

Critics say that in such a system, fewer hospitals would be built, elderly patients would frequently forgo procedures for lack of money, and physicians would earn far less income. In such a system, physicians would be controlled by few federal regulations.

Rawls’s Theory of Justice

John Rawls, a philosopher of the twentieth century, believed that moral constraints should be imposed on the social contract. He called his most important constraint “the veil of ignorance”—in the hypothetical social contract, no one should know his or her age, gender, race, health, number of children, income, wealth, or other arbitrary personal information. Rawlsian contractarianism assumes that people are self-interested and choose the basic institutions of their society in a social contract; it is Kantian in imposing impartiality or fairness on the choosers by ruling out arbitrary information on them.

Rawls argues that the only rational way to choose under his veil of ignorance is as if, when the veil lifts, one might be the least well-off person in society. Because you don’t know anything personal under the veil, you don’t know what place in society you will occupy. This justifies the choice of his famous difference principle: Choosers should opt for institutions creating equality unless a difference favors the least well-off group.

So everyone should be trained in medicine unless training only a few is better for the least well-off. Mandating the difference principle imposes the Golden Rule on the structure of society.

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Rawlsian justice entails that every citizen should have equal access to medical care unless unequal access favors the poor. It reduces the inequalities of fate; hence, children and those with genetic disease must get good medical care as a matter of justice.

Advocates of free markets favor private medical insurance plans in which the healthy do not subsidize the unhealthy. Rawlsians see “healthy” and “unhealthy” as arbitrary distinctions, more due to genetics than individual merit. Libertarians would allow for-profit companies to practice experience rating, whereby citizens with preexisting illness may be excluded. Rawlsians favor community rating, whereby risk and premium rates are spread over all members of a large community, such as a state or nation.

Marxism

Although both more and less than a theory of justice, Marxism is still an important tool for understanding the world and bioethics. Marx saw history as a struggle between the owners of the means of production (the rich) and the workers (the poor). He thought the rich got richer by not paying workers their true worth (which he called the “labor theory of value”). Workers are exploited and create “surplus value” (i.e., unjustified value) for owners.

In bioethics, Marx’s most important insight may be to always understand how money influences decisions in medicine. Although how people get reimbursed is certainly not the only issue that should be considered in bioethical analysis, it is also naïve to ignore how people get paid. For example, most services of physicians in assisted reproduction or enhancement medicine are not covered by traditional insurance plans, so these kinds of medicine are advertised aggressively in far dif- ferent ways than, say, cancer surgery.

Marxist analysis may be more important than ever today, when the gap between income/wealth over the first years of the 2000s has grown considerably in North America and Europe. Moreover, a whole generation of young people may lack the upward economic mobility of past generations and be trapped into paying exorbi- tant taxes for medical care for seniors.

Four Principles of Bioethics

One modern method of analysis is to dissect a medical case in terms of four prin- ciples. These principles are (patient) autonomy, beneficence, nonmaleficence, and justice.

Autonomy refers to the right to make decisions about one’s own life and body without coercion by others. It honors the value that democracies place on allowing individuals to make their own decisions about whom to marry, whether to have children, how many children to have, what kind of career to pursue, and what kind of life they want to live. Insofar as is possible and to the extent that their decisions do not harm others, individuals should be left alone to make fundamental medical decisions that affect their own bodies and lives.

John Stuart Mill was a political theorist as well as an ethical theorist. In his most famous work of politics, On Liberty (1859), he defended this ideal of autonomy

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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 17

against the growing powers of government. He there defends “one simple principle,” his so-called harm principle: “that the only purpose for which power can rightfully be exercised over any member of a civilized community, against his will, is to pre- vent harm to others. His own good, either physical or moral, is not a sufficient warrant. Over himself, over his own body and mind, the individual is sovereign.”

Autonomy rejects paternalistic ethics. During the patient’s rights movement in the early 1960s in America, feminists scorned paternalistic physicians as sexist octo- genarians who imposed their rigid ideas on a more enlightened, freethinking, younger generation.

Beneficence, or helping others, grounds compassion. It grounds the moral dif- ference between therapeutic and nontherapuetic experiments. If physicians intend to help diabetics, beneficence justifies experiments on diabetics, but if they have no such intent, the experiment may be unjustified.

Beneficence can be seen both as a principle and as a virtue for physicians. Physicians receive special powers, income, and prestige from society and, in return, are asked to help patients. Medical training requires this trait, as demands on a student increase on a slope between premedical years and residency. Self-sacrifice is part of medicine. Ideally, physicians should want to help others, but if the inter- nal desire is lacking, they should act this way out of duty. The principle of benefi- cence spells out this duty.

Beneficence may conflict with autonomy (as any of these principles may conflict with each other). Consider the involuntary psychiatric commitment of homeless people with schizophrenia. Is it better to let such people wander the cold streets of a big city or to incarcerate and medicate them against their will? Should we let them “die with their rights on” or inject them with sedatives and antipsychotic drugs “for their own good”? Maybe we should do nothing at all and not risk making them worse off. After all, who are we to say that it is beneficent to do so? Maybe home- less people with schizophrenia want to stay as they are.

How beneficence and autonomy are balanced in particular cases is not easy to understand. Indeed, when John Stuart Mill advocated both utilitarianism and per- sonal autonomy, critics wondered whether he contradicted himself.

Nonmaleficence, not harming others, echoes an ancient maxim of professional medical ethics, “First, do not harm.” Above all, this maxim implies that physicians not technically competent to do something shouldn’t do it. So, medical students should not harm patients by practicing on them without consent: Patients are there to be helped, not to help students learn.

Patients should not leave encounters with physicians worse off than they were before. This crucial principle of medical ethics prohibits corruption, incompetence, and dangerous, nontherapeutic experiments. It explains why the 80,000 deaths per year in American hospitals from mistakes horrify critics.

The principle of nonmaleficence also accords with Mill’s harm principle: The state and society should not attempt to shape all citizens for the better. In a funda- mental sense, the first obligation we have is to leave each other alone, especially those who don’t want our help. That means that physicians should not harm patients by unsolicited intrusions.

The last principle, justice, has both a social and a political meaning. Socially, it means treating similar kinds of people similarly (this is the so-called formal element

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18 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles

of the larger principle). A just physician treats each patient the same, regardless of his or her insurance coverage.

Politically, the principle refers to distributive justice and, in medicine, to the allocation of scarce medical resources. Because there are many theories of justice, this principle is not self-evident. For example, Rawls’s theory of justice demands that medicine serve the poorest people.

But another view equates justice with simple egalitarianism: Medicine is just if it treats each patient equally. Of course, that goal would not be easy to achieve either, and doing so would go a long way toward realizing Rawls’s ideal. At the least, it would mean a guarantee of equal access to medical care for every citizen, such that insurance coverage would not be a factor in selection of which patient receives a liver transplant.

In the most minimal sense, justice requires physicians to treat patients impar- tially, without bias on account of gender, race, sexuality, or wealth. Even in such a minimal sense, justice requires a high standard of behavior among physicians.

Final Comment

And what, one might ask, is the point of studying ethics or bioethics in the first place? As an answer, we might cite philosopher Richard Rorty’s answer to the question, “How is the study of philosophy supposed to benefit someone?” To which Rorty replied, “The point of reading philosophy is not to find a way of altering one’s inner state, but rather to find better ways of helping us overcome the past in order to create a better human future.”

DISCUSSION QUESTIONS

1. Cite three examples where utilitarians and Kantians disagree about issues in bioethics.

2. Cite two examples where utilitarians and Kantians would advocate impartial positions but the Ethics of Care would advocate a partialist position.

3. Cite three examples where definition of “person” is important in bioethics. 4. Discuss examples from recent political campaigns of some of the fallacies

discussed in this chapter.

NOTES

1. R. M. Hare and Louis Pojman, eds., Ethical Theory: Classical and Contemporary Readings, Wadsworth, Belmont, CA, 2007, pp. 480–481.

2. P. A. Woodward, ed., The Doctrine of Double Effect: Philosophers Debate a Contro versial Moral Principle, University of Notre Dame Press, Notre Dame, IN, 2001.

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This chapter discusses two kinds of cases involving dying: nonterminal patients with unbearable conditions who want to die with a physician’s help and terminal patients who also want to die with a physician’s help.

THE CASE OF ELIZABETH BOUVIA (1983–PRESENT)

In 1983, Elizabeth Bouvia’s father drove her from Oregon to Riverside General Hospital in California, where psychiatrists admitted her as a voluntary suicidal patient. Wanting “just to be left alone and not bothered by friends or family or anyone else and to ultimately starve to death,” she had already attempted suicide once.1 “Death is letting go of all burdens,” she claimed. “It is being able to be free of my physical disability and mental struggle to live.”

Almost totally paralyzed from cerebral palsy, Elizabeth, then 25 years old, never had the use of her legs, although her right hand could control a battery-powered wheelchair and the use of that hand also enabled her to smoke cigarettes. She could use her facial muscles to chew, swallow, and speak. She also had painful, severe degenerative arthritis. As a California resident, her medical care was paid for by Medi-Cal, a state–federal program.

She had a hard life. At five, her parents divorced. Afterward, her mother raised her for five years but then abandoned her to a children’s home. The following account comes from two physicians:

When Elizabeth turned 18, her father told her that he would no longer be able to care for her because of her disabilities. She then tried to do the right thing and be independent. She found state aid and lived on her own in an apartment with a live-in nurse. She finished a high school degree and then graduated in 1981 from San Diego State University with a bachelor’s degree in 1981. She entered a master’s program at the university’s School of Social Work, and volunteered for eight months

C H A P T E R 2

Requests to Die: Terminal and Nonterminal Patients

Elizabeth Bouvia, Larry McAfee, Brittany Maynard, Jack Kevorkian, Anna Pou

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20 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

in an associated program. In August 1982, she married an ex-convict, Richard Bouvia, and conceived a child with him, but a few months later, it miscarried. After being unable to find work or support from her parents, Richard abandoned her, stating—according to pleadings in the case—that he “could not accept her disabilities, a miscarriage, and rejection by her parents.” A few days after being abandoned, Elizabeth Bouvia got a ride to Riverside General and entered its emergency room, stating that she wanted to commit suicide.2

During her first four months at Riverside Hospital, the chief of psychiatry, Donald Fisher, supervised her treatment. When he refused to let her starve, Elizabeth con- tacted the American Civil Liberties Union (ACLU) and telephoned a reporter. Richard Scott of Beverly Hills, both a physician and a lawyer, represented her free of charge.

The Legal Battle: Refusing Sustenance

In a hearing before California probate judge John Hews, Fisher testified that because Elizabeth might change her mind, he would not let her starve and would force-feed her: “The court cannot order me to be a murderer nor to conspire with my staff and employ- ees to murder Elizabeth.”3 Elizabeth Bouvia asked the judge to block her force-feeding.

Habeeb Bacchus, associate chief of medicine at Riverside Hospital and Bouvia’s second physician, argued that “being allowed to die when there’s no need for her to die—this is a dangerous precedent. Patients might wonder, ‘Am I next slated to be allowed to die?’”4

Advocates for the disabled feared that if Elizabeth died, other disabled people might follow. A lawyer at the Law Institute for the Disabled asserted that Bouvia symbolized a “social problem” of disabled people who are told they cannot be pro- ductive and said, “She needs to learn to live with dignity.”5

At this point, the case escalated into a public debate:

Disabled individuals held vigils at the hospital to convince her to change her mind. Bouvia’s estranged husband hitchhiked to Riverside from Iowa, retained lawyers, and asked to be named her legal guardian. A convicted felon volunteered to shoot her.6

Judge Hews allowed the force-feeding. Admitting Elizabeth’s rationality, sincer- ity, and competence, he decided based on the “profound effect on the medical staff, nurses, and administration of the hospital,” as well as the “devastating effect on other . . . physically handicapped persons.”7 Bouvia’s lawyer said that Hews accepted “the Chicken Little defense that the sky would fall if Ms. Bouvia wasn’t force-fed.”8 Judge Hews held that since the patient was not terminally ill and could live for decades, “there is no other reasonable option.”

Columnist Arthur Hoppe thought otherwise:

I had the feeling that the judge, the doctor, and the hospital had found Elizabeth Bouvia guilty—guilty of not playing the game. It was as though the Easter Seal Child had looked into the camera and said being crippled was a lousy deal and certainly nothing to smile about.9

Boston University law professor George Annas blasted Hews:

The judge’s decision begs the question: Is there a reasonable option? In the adver- sary proceeding played out in California, no one seemed to search for reasonable

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 21

options. The county, in fact, consistently took the most extreme position. It continually threatened to eject Ms. Bouvia from the hospital by force, and leave her out on the front sidewalk, hoping someone would pick her up and take her away. Almost from the beginning, the county and hospital made it clear that they did not care whether she lived or died but, because of their own fear of potential legal liability, would not let her die at Riverside Hospital.10

Elizabeth appealed but continued to be force-fed. When aides pushed plastic tubing in her mouth, she bit through it. Thereafter, three attendants held her down, while another inserted tubing through her nose into her stomach, pumping in a liquid diet. Annas commented on this gruesome scene:

I do not believe competent adults should ever be force-fed; but efforts at persuading the individual to change his or her mind, and offering oral nutrition should con- tinue. If a court determines, however, that invasive force-feeding is required, . . . then to [prevent] hospitals from becoming the most hideous torture chambers, some reasonable limit must be placed on this “treatment.”11

Elizabeth Bouvia lost her first appeal and left Riverside Hospital in 1984. Indi- vidual commentators interpreted differently what happened next. Two physicians wrote in a medical journal:

The standoff continued until April 7, when Ms. Bouvia unexpectedly checked herself out of the hospital. The hospital bill for the 217 days . . . was more than $56,000. Ms. Bouvia went to a hospital in Mexico, known for amygdalin (Laetrile) treatments for cancer. She believed the staff would help her die. Her new physicians, however, became convinced that she wanted to live. Two weeks later, Ms. Bouvia left the hospital, hired nurses, and moved to a motel. Three days later, with friends, a reporter, and an intern from . . . at her side, she gave up . . . and took solid food. Ms. Bouvia [then] said that she wanted treatment, . . . .12

This account emphasizes Elizabeth Bouvia’s unexpected departure from the hos- pital, her costly hospital bills at the public expense, the agreement between Mexican and American physicians in refusing to allow her to die, and her seemingly arbitrary decision to give up starving herself.

In contrast, lawyer George Annas writes:

Two years ago, this column dealt with Elizabeth Bouvia’s unequal and doomed strug- gle. . . . After losing both in the hospital and in the courtroom, Ms. Bouvia fled to Mexico on April 7, 1984, to seek her death. She was soon persuaded that Mexican physicians and nurses would be no more sympathetic to her plan than those at Riverside, and so returned to California. Because of the brutal force-feeding she had endured at Riverside, she was afraid to return there. Since no other facility would admit her unless she agreed to eat, she resigned herself to eating and entered a “private care” location. There she remained, without incident, for more than a year.13

An advocate for dignified dying, the Hemlock Society’s Derek Humphrey, wrote even more sympathetically:

Her troubles multiplied. The graduate school where she had been studying refused to readmit her, and her brother drowned in a boating accident. Not long after, Elizabeth had a miscarriage, and she learned her mother was dying of cancer.

. . . Determined once again to be in charge of her fate, she asked her father to take her to the county hospital in Riverside, near Los Angeles (an area where

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22 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

she had friends), for an examination. She checked herself into the psychiatric ward and told physicians she wanted to die by starvation. Elizabeth specifically asked that, until she died, she be looked after normally and given painkillers when her arthritis was troublesome.14

Disability advocate Paul Longmore offered a very different perspective on Bou- via’s case, arguing that it reflected rank prejudice against the disabled. He wrote:

The very agencies supposedly designed to enable severely physically handicapped adults like her to achieve independence . . . become yet another massive hurdle they must surmount, an enemy they must repeatedly battle but can never finally defeat. . . .

[When she tried to go on internship,] the SDSU [San Diego State University] School of Social Work refused to back her up. They wanted to place her at a center where she would only work with disabled people. She refused. Reportedly, one of her employers told her she was unemployable, and that, if they had known just how disabled she was, they would never have admitted her to the program. . . .

The attorneys brought in three psychiatric professionals to provide an inde- pendent evaluation. None of them had experience or expertise in dealing with persons with disabilities. In fact, Elizabeth Bouvia had never been examined by a psychiatric or medical professional qualified to understand her life experience. . . .

Her examiners prejudicially concluded that because of her physical condition she would never be able to achieve her life goals, that her [physical] disability was the reason she wanted to die, and that her decision for death was reasonable. . . . [Judge Hews] too declared that Ms. Bouvia’s physical disability was the sole reason she wished to die.15

Each account appeared in scholarly journals, implying objectivity, yet the physicians portray her as irresponsible; Annas and Humphrey portray her as a heroine fighting a cold bureaucracy; and Longmore portrays her as a victim of a prejudiced system and of misguided, do-gooder lawyers. Physicians refer to her as “Bouvia,” Humphrey calls her “Elizabeth,” and Longmore uses “Elizabeth Bouvia” or “Ms. Bouvia.” The physicians say that “she got a ride” to Riverside, as if she had hitchhiked to some arbitrary location; Humphrey says that her father took her to a place “where she had friends.” Longmore emphasizes her desire to be inde- pendent; Humphrey emphasizes her physical pain and social trauma. Longmore suggests that society is prejudiced against disabled people and thus that Elizabeth Bouvia’s disability is not so much her problem as society’s problem. Humphrey writes from a point of view inside Elizabeth Bouvia; the physicians write from the viewpoint of hospital staff members who deal with problematic patients. Long- more critiques an inadequate system that forces terrible, desperate decisions.

In 1985, Elizabeth entered Los Angeles County–USC Medical Center, where physicians installed a morphine pump to control pain caused by her worsening arthritis. She promised to eat, so she was not force-fed.

After two months, physicians transferred her to nearby High Desert Hospital, another public hospital. Although she ate there, her physicians decided that she wasn’t eating enough and again force-fed her. They reasoned that “since she is occu- pying our space, she must accede to the same care which we afford every other patient admitted here, care designed to improve and not detract from chances of recovery and rehabilitation.”16 Critics objected: Must all patients who occupy High Desert hospital’s space do as they are told? Would the hospital want to market this theme—”Enter High Desert Hospital and Do as We Say”?

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 23

Elizabeth petitioned courts to stop her forced feeding. At this time, she weighed only 70 pounds. A consultant on nutrition noted that a weight of 75 or 85 pounds “might be desirable.” Her physicians wanted her to weigh about 110 pounds.

At a hearing, Judge Warren Deering interpreted her low weight as “not moti- vated by a bona fide right to privacy but by a desire to terminate her life.”17 He said the right to privacy did not cover suicide by starvation and ordered force- feeding, because “Saving her life is paramount.”

Elizabeth appealed and the California Court of Appeal ruled in her favor: “A desire to terminate one’s life is probably the ultimate exercise of one’s right to privacy.”18 This Court found “no substantive evidence to support the [lower] court’s decision.”

Judge Deering had been concerned that Elizabeth could live for decades, but the Court dismissed that concern: “This trial court mistakenly attached undue importance to the amount of time possibly available to her, and failed to give equal weight and consideration for the quality of that life; an equal, if not more signifi- cant, consideration.”

The appeals court concluded:

This matter constitutes a perfect paradigm of the axiom: “Justice delayed is justice denied.” Her mental and emotional feelings are equally entitled to respect. She has been subjected to the forced intrusion of an artificial mechanism into her body against her will. She has a right to refuse the increased dehumanizing aspect of her condition. . . . The right to refuse medical treatment is basic and fundamental. It is recognized as part of the right of privacy protected by both the state and federal constitutions. Its exercise requires no one’s approval. It is not merely one vote subject to being overridden by medical opinion. . . .

[A precedent has been established that when] a doctor performs treatment in the absence of informed consent, there is an actionable battery. The obvious corol- lary to this principle is that a competent adult patient has the legal right to refuse medical treatment. [Moreover,] if the right of the patient to self-determination as to his own medical treatment is to have any meaning at all, it must be paramount to the interests of the patient’s hospital and doctors. . . . The right of a competent adult patient to refuse medical treatment is a constitutionally guaranteed right which must not be abridged. . . .

In Elizabeth Bouvia’s view, the quality of her life has been diminished to the point of hopelessness, uselessness, unenjoyability, and frustration. She, as the patient, lying helplessly in bed, unable to care for herself, may consider her exist- ence meaningless. She is not to be faulted for so concluding. . . . As in all matters, lines must be drawn at some point, somewhere, but that decision must ultimately belong to the one whose life is in issue.

The state appellate court held that competent adults could refuse medical treat- ment: Building on prior decisions in other states,19 this state court said that a com- petent adult patient had a constitutionally guaranteed right to refuse medical treatment that must not be abridged. This court also had strong words about force-feeding:

We do not believe it is the policy of this State that all and every life must be pre- served against the will of the sufferer. It is incongruous, if not monstrous, for med- ical practitioners to assert their right to preserve a life that someone else must live, or more accurately, endure, for “15 or 20 years.” We cannot conceive it to be the policy of this State to inflict such an ordeal upon anyone.

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24 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

If nothing else, Elizabeth Bouvia, frail, small, alone, and barely able to move, won a remarkable victory. Preceding the U.S. Supreme Court’s Cruzan decision by five years, she wrested from the courts a victory about the right to die for competent patients.

Of great importance, after her victory, Elizabeth did not kill herself. When some caring people offered to help her die, she changed her mind. Most important, by giving her control over her life, they gave her a reason to live.

A decade after her victory in court, she described her body as “gnarled and useless.”20 In 1994, she lived in California on Medi-Cal, in a private hospital room with 24-hour-day care at a cost of $300 a day. A morphine pump controlled her pain, and she weighed 100 pounds. She said her life was “a lot of needles and bags,” and she spent her time watching television. “I wouldn’t say I’m happy, but I’m physically comfortable, more comfortable than before. There is nothing really to do. I just kind of lay here.”

In 1992, Richard Scott, the physician and lawyer who represented Elizabeth Bouvia and who battled depression most of his life, committed suicide. When he did, Elizabeth Bouvia said, “Jesus, I wish he could have come in and taken me with him.”

In 1996, Elizabeth appeared on 60 Minutes on the 10th anniversary of a previ- ous 60 Minutes story about her. Then she lived in Riverside County Hospital, but in 1997, a new pro bono attorney Griffith Thomas, M.D., got her disability payments put into a trust fund that allowed her to live in her own apartment with 24-hour- a-day in-home assistants. Even though this cost far less than her hospital room, it took a decade to accomplish.

Elizabeth, in 1996, still had pain each day and still needed morphine. She did not intend to be alive for another story by 60 Minutes in 2006 and felt ambivalent about her life. An obituary for a disability rights advocate in 2008 mentioned that Elizabeth was still alive.21 In 2016, she seemed to be still alive, but no one had heard anything about her.

THE CASE OF LARRY MCAFEE (1985–1995)

In 1985, an accident left 29-year-old Larry McAfee almost completely paralyzed (a C-2 quadriplegic). While studying mechanical engineering at Georgia State Uni- versity, he fell off of his motorcycle on a dirt road, snapped his head, and crushed his two top vertebrae. Left with use only of his eyes, mouth, and head, he could not clear his throat and sometimes choked. He needed a ventilator to breathe and could not control his bladder and bowels. He was unmarried and could feel no pleasure from sexual activity.

McAfee had a $1 million health insurance policy, and using it, he remained for over a year at the expensive Shepherd Spinal Center in Atlanta, where the average stay for C-1 to C-4 patients is 19 weeks. He then moved to an apartment in Atlanta, where he insisted on certified nurses who were three times more expensive than home health aides. After 16 months of such living, he exhausted his insurance. Not wanting to be a burden, he refused his family’s offer of care.

With no resources, he became eligible for Medicaid, the fund in each state that pays for medical care for the indigent. McAfee wanted Georgia Medicaid to pay for

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 25

his care in an apartment and refused to enter a state nursing home. Only a small number of nursing homes in America admit ventilator-dependent patients such as Larry McAfee. Even fewer take Medicaid patients, because Medicaid’s reimburse- ment doesn’t pay for the staffing needed for such patients. Georgia officials even- tually transferred him to a Medicaid nursing home in Ohio that could care for respirator-dependent C-1 patients. This facility accepted McAfee on a temporary basis until Georgia could find a bed for him.

In Ohio, Larry wouldn’t make appointments for vocational rehabilitation. The administrator there said, “Larry was very demanding, wanted things precisely the way he wanted them. . . . I had nurses toward the end who just couldn’t work with him anymore because they were just extremely, extremely frustrated.”22 He noted that McAfee’s family and friends all lived in Georgia.

McAfee claimed that he had been housed in Ohio with demented, senile, and brain-damaged patients who were being cheaply warehoused with only one or two staff for as many as 40 patients. The easiest way to warehouse such patients is to keep them heavily sedated. McAfee said that he experienced intense loneliness and received inadequate personal care. “You’re just a sack of potatoes,” he said.23

After two long years, it became clear to Ohioans that McAfee had been dumped on them, so officials angrily hustled him onto a plane and left him in the emergency room at Grady Memorial Hospital in Atlanta.

There, Larry spent several miserable months in the intensive care unit. In 1989, Briarcliff Nursing Home, in a suburb of Birmingham, Alabama, accepted him as a patient, and he was transferred there.

Larry, one day, called the radio talk show of Russ Fine, a disability advocate and director of the Injury Control Research Center at the University of Alabama at Birmingham. According to Fine, McAfee’s treatment represented “everything that’s wrong about the system that serves disabled people.”24

On first meeting with Larry, Fine found him lying in bed staring at the ceiling, with no voice-activated telephone and no television. All he could do was stare “at whatever happened to be in front of his face. From a quality of life standpoint, it was a devastating commentary on a society with a very advanced health-care sys- tem.”25

A reporter once arrived to find McAfee’s urinary catheter not connected to a container and spilling urine on the floor. Fine says, “These facilities were not equipped to take care of a patient such as Larry, with labor-intensive health-care requirements.”26

In 1989, four years after Elizabeth Bouvia’s victory, Larry filed suit in federal court to exercise his right to die. After a heart-wrenching 45-minute hearing in Fulton County Superior Court, Judge Edward Johnson ruled in McAfee’s favor. Because his ventilator had once dislodged accidentally, causing him to suffocate, Larry did not want to experience such feelings again, so he asked to be sedated before disconnection. Judge Johnson granted this, declaring that no civil or criminal penalty would attach to any doctor who helped.

Everyone assumed that with his legal victory, McAfee would kill himself within days. Like Elizabeth Bouvia, he did not. Behind the scenes, Russ Fine had convinced McAfee to stay alive. But then Larry’s financial problems began.

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26 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

Social Security, besides financing income for Americans over 62, provides financial assistance to disabled people as Supplemental Security Income (SSI). In 2011, SSI payments averaged $700 a month and were paid to 10.6 million disabled Americans.27 Larry qualified for SSI assistance.

In 1989, Russ Fine persuaded Birmingham’s United Cerebral Palsy to let Larry live temporarily in its nine-person group home. Larry stayed there on-and-off until late 1990, but because he required expensive nurses, he then had to find somewhere else to live.

Federal regulations affecting Medicaid block using it to pay for disabled people to live in group homes. This structural discrimination forces such people to live either in public hospitals or be warehoused in huge public nursing homes. When President George Bush refused a waiver of Medicaid to help Larry, the Georgia legislature created an independent-living facility for him and for five other patients as an exception to Georgia’s disability law and Medicaid plan. Larry then lived in Augusta, near its medical school.

In 1993, his accident and fight were portrayed in The Switch, a CBS movie. To keep his disability payments, McAfee could not accept any money from the movie.

A few months later, Georgia “forgot” to fund McAfee’s group home in its state budget. Once again, Russ Fine held Georgia’s feet to the fire on Larry’s behalf, pointing out that the cost per person in the group home was only $52 a day. Geor- gia found funds to continue the home for another year.

In 1993, a kink in Larry’s urinary catheter caused urine to back up. Being paralyzed, Larry could not feel what was happening; the backup caused toxicity and high blood pressure. This caused two devastating strokes.28 Larry survived, but the strokes injured his brain, and he was left with just a small amount of short-term memory.

He had planned to leave the group home for his own apartment but instead was transferred to a long-term nursing home. This was just the kind of place Larry had wanted to avoid. Ten years after his accident, Larry died in 1995. He died not by his own decision but after being comatose for many months.

THE CASE OF BRITTANY MAYNARD (2013–2014)

In April 2013, Brittany Maynard, a 28-year-old Californian, experienced intolerable migraines that turned out to be glioblastoma, the worst kind of brain cancer.29 Maynard had earned a degree in psychology in 2006 from the University of California, Berkeley and a master’s degree in education in 2010. Passionate about travel, she visited many countries and taught at an orphanage in Nepal.

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