Practical Decision Making in Health Care Ethics: Cases, Concepts, and the Virtue of Prudence

548 Pages·2016·4.516 MB·English

by  Raymond J Devettere

Practical Decision Making in Health Care Ethics
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Practical Decision Making in Health Care Ethics
Cases, Concepts, and the Virtue of Prudence
Fourth Edition
RAYMOND J. DEVETTERE
Georgetown University Press / Washington, DC
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© 2016 Georgetown University Press. All rights reserved. No part of this book may be reproduced or utilized in any form or by any means,
electronic or mechanical, including photocopying and recording, or by any information storage and retrieval system, without permission in
writing from the publisher.
Library of Congress Cataloging-in-Publication Data
Devettere, Raymond J., author.
Practical decision making in health care ethics : cases, concepts, and the virtue of prudence / Raymond J. Devettere. — Fourth edition.
pages cm
Includes bibliographical references and index.
ISBN 978-1-62616-277-8 (hardcover : alk. paper) — ISBN 978-1-62616-276-1 (pbk. : alk. paper) — ISBN 978-1-62616-278-5 (ebook)
1. Medical ethics. 2. Medical ethics—Case studies. 3. Medical ethics—Decision making. I. Title.
R724.D48 2016
174.2—dc23
2015025210
This book is printed on acid-free paper meeting the requirements of the American National Standard for Permanence in Paper for Printed
Library Materials.
21 20 19 18 17 16 9 8 7 6 5 4 3 2 First printing
Printed in the United States of America
Cover design by Faceout Studio
Cover image by Martin Barraud, Getty Images
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For Paula
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It is a characteristic of reason to proceed from general principles to particular conclusions.
Nonetheless, speculative reason does this one way, and practical reason another. Speculative
reason is chiefly concerned with necessary things which cannot be otherwise than they are, and
so truth is found without diminution in the particular conclusions just as in the general
principles. But practical reason is concerned with things which can be otherwise than they are,
and this includes human behavior, and thus, even if there is some force in the general
principles, the more you descend to the particular conclusions, the greater is their failure.
Thomas Aquinas, Summa Theologiae, I II, q. 94, a.4, 13th century
In short, our moral discourse ... involves the concept of an objectively or absolutely valid
moral action-guide, and our moral judgments and decisions claim to be parts or applications of
such an action-guide.
William Frankena, “The Principles of Morality,” 1973
Whereas young people can become proficient in geometry and mathematics, we do not find
young people proficient in prudential reasoning. The reason is that prudential reasoning is
about particular cases and knowledge about particulars comes from experience.
Aristotle, Nicomachean Ethics, 1142al2–16, 4th century BCE
The argument aims eventually to be strictly deductive ... Clearly arguments from such
premises can be fully deductive, as theories in politics and economics attest. We should strive
for a kind of moral geometry with all the rigor which this name connotes.
John Rawls, A Theory of Justice, 1971
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Contents
Preface to the Fourth Edition
Introduction
1 What Is Ethics?
Defining Ethics; Two Kinds of Ethics; Historical Versions of the Ethics of Obligation; Moral Reasoning
and the Theories of Obligation; Contrasting the Ethics of Obligation with an Ethics of the Good;
Retrieving the Ethics of the Good; Bioethics Today; Suggested Readings
2 Prudence and Living a Good Life
The Good We Desire; Happiness; Virtue; Moral Virtues; Prudence: The Master Virtue; Suggested
Readings
3 The Language of Health Care Ethics
Distinctions That Can Mislead; Helpful Distinctions; Suggested Readings
4 Making Health Care Decisions
Decision-Making Capacity; Informed Consent; Advance Directives; The Patient Self-Determination Act:
The Case of Hazel Welch; Final Reflections; Suggested Readings
5 Deciding for Others
Becoming a Proxy; Standards for Making Proxy Decisions; Deciding for Older Children; Deciding for
the Mentally Ill; Deciding for Patients of Another Culture; Final Reflections; Suggested Readings
6 Determining Life and Death
The Classical Conceptual Framework; A New Conceptual Framework; When Does One of Us Begin?;
When Does One of Us Die?; Controversies over Determining Death; Ethical Reflections; Suggested
Readings
7 Life-Sustaining Treatments
Ventilators: The Case of Karen Quinlan, The Case of William Bartling, The Case of Helga Wanglie, The
Case of Barbara Howe; Dialysis: The Case of Earle Spring; Surgery: The Case of Rosaria Candura;
Other Life-Sustaining Treatments; Suggested Readings
8 Cardiopulmonary Resuscitation
Terminology; A Brief History of Resuscitation Attempts; The Effectiveness of Attempting CPR;
Learning to Withhold CPR; Important Ethical Elements for a DNR Policy; Lingering Questions about
DNR Orders; Resolving Questions about CPR: The Case of Maria M, The Case of Shirley Dinnerstein,
The Case of Catherine Gilgunn; Suggested Readings
9 Medical Nutrition and Hydration
The Techniques and Technologies; Conceptualizing Medical Nutrition and Hydration; Early Cases about
Feeding Tubes: The Case of Clarence Herbert, The Case of Claire Conroy, The Case of Elizabeth
Bouvia; Cases of Persistent Vegetative State: The Case of Nancy Cruzan, The Case of Terri Schiavo;
Recent Breakthroughs in the Diagnosis of Consciousness Disorders; An Unresolved Controversy: The
Vatican and Feeding Tubes; An Emerging Controversy: VSED; Suggested Readings
10 Reproductive Issues
Contraception and Sterilization: Posthumous Motherhood: A Request for Posthumous Motherhood;
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Cloning; Surrogate Motherhood: The Case of Baby M; Ethical Reflections; Suggested Readings
11 Prenatal Life
Abortion: Abortion in History, Abortion and the Supreme Court; Moral Issues of Abortion; Abortion and
Excommunication at a Catholic Hospital; RU-486; Maternal–Fetal Conflicts: The Case of Angie, The
Case of Samantha Burton; Ethical Reflections; Suggested Readings
12 Infants and Children
Historical Background; A Sampling of Neonatal Abnormalities; Special Difficulties in Deciding for
Neonates and Small Children; The Baby Doe Regulations: The Case of Baby Doe, The Case of Danielle,
The Case of Baby K, The Case of Ashley; Infant Euthanasia in the Netherlands; Suggested Readings
13 Euthanasia and Physician-Assisted Suicide
Historical Overview; Recent Developments; Relevant Distinctions; Moral Reasoning and Euthanasia;
Legalization of Euthanasia and Physician-Assisted Suicide; The Story of a Landmark Suicide: The Case
of Diane; Concluding Reflections; Suggested Readings
14 Medical and Behavioral Research
Notorious Examples of Questionable Ethics in Research; Reactions to the Questionable Medical
Research; Research on Embryos; Research on Fetuses; Research on Minors; Controversial Research on
Babies: The SUPPORT Study; Research in Developing Countries; Other Special Populations in
Research; Animals and Medical Research; Suggested Readings
15 Transplantation
Transplantation of Organs from Dead Human Donors: The Case of Jamie Fiske, The Case of Jesse
Sepulveda; Transplantation of Organs from Living Human Donors; Transplantation of Organs from
Animals: The Case of Baby Fae; Implantation of Artificial Hearts; Suggested Readings
16 Medical Genetics and Genomics
Part 1: Ethics and the Genomic Revolution; Part 2: Ethical Issues in Genetic Testing; Part 3: Screening
Newborns and Fetuses; Part 4: Research to Develop Genetic Therapy: The Case of Jesse Gelsinger;
Suggested Readings
Glossary
Index of Cases
Index
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Preface to the Fourth Edition
The title has been slightly changed in the fourth edition; it is now Practical Decision Making in Health Care
Ethics: Cases, Concepts, and the Virtue of Prudence. The addition of the word “virtue” helps to make clear
the approach taken in the book: the classical virtue ethics especially as it was developed by Aristotle and
Aquinas. In this approach the key virtue is the decision-making virtue of prudence (prudentia in Aquinas and
phronesis in Aristotle).
Prudence is a mental (not a moral) virtue and it is practical (about something we actually do or not do).
For Aristotle and Aquinas, prudence is the normative virtue in ethical decision making and judgment. For
Aristotle a behavior is good if it is kata ton orthon logon, and for Aquinas it is good if it is secundum rectam
rationem. The orthos logos or the recta ratio is the practical reasoning known as prudence. Whatever
behavior accords with prudence is the ethical thing for us to do, and whatever is contrary to prudential
reasoning would be is unethical.
This virtue-based ethics is not a principle-based or rights-based ethics but an ethics of normative practical
reasoning where moral reasonableness is understood as what contributes to the human good as best we can
determine this in the particular situation. Principles, rights, and rules can be important but they are only pre-
ethical orientations and not the final norm for deciding what to do in authentic virtue ethics.
The fourth edition has added important new cases that have emerged since the last edition and attracted
national interest, among them the following:
• Marlise Munoz, a woman in Texas pronounced dead in November 2013 when she was fourteen weeks
pregnant whose body was kept on life support by a hospital contrary to her wishes and those of her
husband until January 2014 when a court overruled the hospital.
• Jahi McMath, a teenager on life support in California pronounced dead in December 2013 whose mother
moved her to New Jersey where families can prevent a determination of death by the whole-brain-
death criterion if they object to it; Jahi remains there on life support as this is being written (January
2015).
• A published case at Children’s Hospital in Boston where a well-known physician-ethicist argued that it
was ethical for him to order emergency cardiopulmonary efforts of no benefit for a dying child simply
because the parents wanted it.
• Margot Bentley, a woman (and a former nurse) dying in 2013 of late-stage Alzheimer’s disease in
Canada who had written an advance directive in 1991 indicating that she did not want “nourishment or
liquids” if she was dying from an incurable disease, yet the nursing home continued to spoon-feed her
while her family sought support in court. This case raises new questions: is it moral for caregivers to
honor an incapacitated person’s advance directive when she continues to open her mouth and
swallow?
• The cases of Hobby Lobby and Conestoga Wood Specialties, in which the Supreme Court ruled (5–4) in
June 2014 that businesses can opt out of offering contraceptive coverage in their employee insurance
as mandated by the Affordable Care Act (Obamacare) if it conflicts with the religious beliefs of the
owners.
• A published case where the family of a dying woman at Massachusetts General Hospital (who had been
on birth control) agreed to withdraw life support but then had it restarted so they could harvest her
eggs and, thanks to in vitro fertilization and her husband’s sperm, try to have a posthumous child.
• A widely publicized case of an abortion at St. Joseph’s Catholic hospital in Phoenix in late 2009; the
bishop announced that a sister on the ethics committee was excommunicated and then ruled that the
large hospital (697 beds and staff of 5,000) is no longer a Catholic hospital despite the views of some
Church lawyers and theologians that the abortion of the doomed fetus to save the woman’s life was
morally justified.
• Brittany Maynard, the twenty-nine-year-old California woman dying of brain cancer who moved to
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Oregon in 2014, where it is legal for a doctor to help people commit suicide, and who announced
publicly that she would kill herself on November 2, and then did. Her story has added great impetus to
the debate over expanding the legalization of physician-assisted suicide.
• Brooke Hopkins, the husband of a well-known thoughtful ethicist and advocate of the right to euthanasia
and physician-assisted suicide (Margaret Battin), who became seriously paralyzed in 2008 after an
accident-induced broken neck and cardiac arrest, and who changed his mind several times over many
months about withdrawing life support, once after the ventilator was actually stopped at his request,
before he finally chose to have it stopped in hospice in 2013. The story raises important questions
about the status of a patient’s decision for euthanasia or suicide assistance where there will be no
opportunity to reconsider once the procedure has begun.
• Samantha Burton, twenty-five weeks pregnant with her third child in 2009, who went to a hospital in
Florida after premature rupture of membranes. When doctors doubted that she would stay on bed rest,
the hospital obtained a court order keeping her there. Three days later she suffered a fetal demise. An
appeals court later ruled that the court order was a violation of her rights to privacy and liberty. The
case highlights the conflict between a state’s interest in protecting possibly viable fetal life and a
pregnant woman’s ability to choose her medical care.
The fourth edition also retains many of the major case studies introduced in the third edition: Terri
Schiavo, Jesse Gelsinger (the first death caused by genetic research), Barbara Howe (a multiyear dispute
between the family and Massachusetts General Hospital over withdrawing life-sustaining treatment), Ashley
and the Ashley Treatment (surgery and treatment to sterilize and stunt the growth of a female child with
encephalopathy), and Sun Hudson (removal of a child’s life-sustaining treatment against the wishes of his
mother in accord with the Texas Advance Directives Act) as well as most of the older classic cases that have
shaped American bioethics: Quinlan, Conroy, Bouvia, Wanglie, Cruzan, Baby M, Baby Doe, Baby K, and
Baby Fae (who received a heart transplant from a baboon).
The new edition has also added analyses of several research studies that raise serious ethical issues, among
them the following.
• The government-sponsored sexually transmitted disease studies in Guatemala in the late 1940s that did
not become public until 2010 and then became the subject of a major report by the Presidential
Commission for the Study of Bioethical Issues (PCSBI) in 2011.
• The Stanford Prison Experiment of 1973 that takes on new relevance in light of the abuses at Abu Ghraib
prison in Iraq.
• The highly controversial multisite NIH-funded study with extremely premature infants known as
SUPPORT (published in 2010), which the Office for Human Research Protections (OHRP) later
determined (2013) had failed to describe the reasonably foreseeable risks to the parents when they
enrolled their infants. This OHRP determination of noncompliance triggered an intense debate about
the ethics of informed consent in a growing class of clinical trials called comparative effectiveness
research that is still unsettled.
Several new sections have been added to the fourth edition. Perhaps the most important and challenging is
the addition to chapter 16 on the ethical implications of genomic medicine (not to be confused with genetics).
We first sequenced human genomes, all 3 billion base pairs, in 2003 at a cost of tens of millions of dollars
each. Now the cost is approaching $1,000, and this has enabled whole genome sequencing (WGS) to move
rapidly from research settings into clinical care and makes it possible for direct-to-consumer companies such
as 23andMe to offer WGS to customers without medical oversight. And it is now possible to sequence the
whole genomes of fetuses by capturing fragments of the fetal DNA circulating in the mother’s blood. We have
just begun to grapple with the ethics of WGS, which will produce a deluge of information encoded in a
person’s genome, much of which we do not yet understand and some of which we may now want to know.
The section also explains the large National Institutes of Health (NIH) clinical trials known as MedSeq (to
determine whether it will be good medicine to sequence adults) and BabySeq (to determine whether it will be
good medicine to sequence newborns).
The fourth edition also contains new material on germ-line modifications that will produce children with
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