Palliative Care and End-of-Life Decisions
Also by George P. Smith LAW AND BIOETHICS: INTERSECTIONS ALONG THE MORTAL COIL DISTRIBUTIVE JUSTICE AND THE NEW MEDICINE THE CHRISTIAN RELIGION AND BIOTECHNOLOGY: A Search for Principled Decision-making HUMAN RIGHTS AND BIOMEDICINE FAMILY VALUES AND THE NEW SOCIETY LEGAL AND HEALTHCARE ETHICS FOR THE ELDERLY BIOETHICS AND THE LAW: Medical, Socio-legal, and Philosophical Directions for a Brave New World THE NEW BIOLOGY: Law, Ethics, and Biotechnology FINAL CHOICES: Autonomy in Health Care Decisions MEDICAL-LEGAL ASPECTS OF CRYONICS ETHICAL, LEGAL, AND SOCIAL CHALLENGES TO A BRAVE NEW WORLD GENETICS, ETHICS, AND THE LAW
Palliative Care and End-of-Life Decisions George P. Smith, II The Catholic University of America, USA
palliative care and end-of-life decisions Copyright George P. Smith, 2013. Softcover reprint of the hardcover 1st edition 2013 978-1-137-37915-3 All rights reserved. First published in 2013 by PALGRAVE MACMILLAN in the United States a division of St. Martin s Press LLC, 175 Fifth Avenue, New York, NY 10010. Where this book is distributed in the UK, Europe and the rest of the world, this is by Palgrave Macmillan, a division of Macmillan Publishers Limited, registered in England, company number 785998, of Houndmills, Basingstoke, Hampshire RG21 6XS. Palgrave Macmillan is the global academic imprint of the above companies and has companies and representatives throughout the world. Palgrave and Macmillan are registered trademarks in the United States, the United Kingdom, Europe and other countries. ISBN: 978 1 137 37739 5 PDF ISBN: 978-1-349-47861-3 Library of Congress Cataloging-in-Publication Data is available from the Library of Congress. A catalogue record of the book is available from the British Library. First edition: 2013 www.palgrave.com/pivot doi: 10.1057/9781137377395
For John H. Lynch, M.D., Anatoly Dritschillo, M.D., Sean P. Collins, M.D., and Loretta S. Coach Hamilton, R.N., with immeasurable gratitude for the superior health care that I have received from them at the Georgetown University Medical Center and to the memory of Myles N. Brand, Harold A. Buetow, Mildred E. Hipskind, Martha J. Jones, Ruth A. Jones, Colleen K. Pauwels, Edmund D. Pellegrino, Harry Pratter, Herman B Wells, David G. T. Williams and George G. Winterton
Contents Preface vii 1 Broadening the Boundaries of Palliative Medicine 1 2 Total Pain Management and Adjusted Care : An Evolving Ideal 21 3 Medical Futility: The Template for Decisionmaking 41 4 Reconstructing the Principle of Double Effect 59 5 Physician Assistance at Death or Euthanasia? 77 6 Shaping a Compassionate Response to End-stage Illness 92 7 Toward a Good Death: A Socio-Legal, Ethical, and Medical Challenge 103 Bibliography 115 Index 117 vi
Preface Since the beginning of the hospice movement in 1967, total pain management has been the declared goal of hospice care. Palliating the whole person s physical, psycho-social, and spiritual states or conditions are central to managing pain which induces suffering. At the end stage of life, an inextricable component of an ethics of adjusted care requires recognition of a fundamental right to avoid cruel and unusual suffering from terminal illness. This book urges wider consideration and use of terminal sedation, or sedation until death, as efficacious palliative treatment and as a reasonable medical procedure in order to safeguard a right to a dignified death. Absent the recognition of a constitutional right or, for that matter, liberty interest in dying with dignity, the best position would be to but accept and recognize the common law right to resist physical intrusion as the corner stone for refusing treatment thereby embracing a more compassionate and enlightened ethic of understanding in managing end-of-life issues. If a human right to avoid refractory pain of whatever nature in end-stage illness is, however, established by the state, a co-ordinate responsibility must be assumed by health care providers to make medical judgments consistent with preserving the best interests of a patient s quality of life by alleviating suffering. The principle of medical futility is the preferred construct for implementing this professional responsibility. Rather than continuing to be mired in the vexatious quagmire of the doctrine of double effect all in an effort vii
viii Preface to test whether end-stage decisions by health care providers are licit or illicit a relatively simple test of proportionality, or cost-benefit analysis, is proffered. Imbedded, necessarily, in this equation is the humane virtue of compassion, charity, mercy or agape. Assertions of state interest to safeguard public morality by restricting intimate associational freedoms to accelerate death in a terminal illness are suspicious if, indeed, not invalid. No individual should be forced to live when, in a futile medical condition, he or she is suffering from intractable somatic and/or non-somatic existential pain. The major bioethical issues and their clinical applications presented in this book have been tested in the market place of ideas in seven major lectures that I have delivered: Strategizing the End-Game: Palliative Medicine and the Law, at the Faculty of Law, University of Oxford, England, 2012; Seeking an Easeful Death: Permutations within a Penumbra, at The Rothermere Institute, University of Oxford, England, 2012; Managing End-of-Life Care: Medico-Legal, Social, Ethical, and Philosophical Challenges, The Myles N. Brand Lecture, Center for Law, Ethics, and Applied Research in Health Information, at the Indiana University School of Law, 2011; Bioethics and Human Rights: Toward a New Constitutionalism, a George G. Winterton Memorial Lecture, at the University of Sydney, Australia, 2010; The Quality of Mercy and Common Dignity: Safeguarding The Last Right, a University Lecture at The University of St. Andrews, Scotland, 2007; and Of Panjandrums, Pooh-Bahs, Parvenus, and Prophets: Law, Religion, and Medical Science, The Michael D. Kirby Lecture, Macquarie University Faculty of Law, Australia, 2005. This book is drawn also from my article, Refractory Pain, Existential Suffering, and Palliative Care: Releasing an Unbearable Lightness of Being, 20 CORNELL JOURNAL OF LAW AND PUBLIC POLICY 469 532 (2011) and completes development of my Bioethics Health Care epistemology that I posited initially with the publication of All s Well That Ends Well: Toward a Policy of Assisted Rational Suicide or Merely Enlightened Self- Determination?, 22 U.C. DAVIS L. REV. 275 419 (1989).