Planning for Uncertainty A Johns Hopkins Press Health Book Planning for Uncertainty Living Wills and Other Advance Directives for You and Your Family Second Edition David John Doukas, M.D. William Reichel, M.D. The Johns Hopkins University Press Baltimore Note to the reader: This book has been written to help the reader make decisions about his or her values relating to medical care and other issues pertaining to the quality of life. This book is not meant to substitute for the advice of medical professionals or legal counsel, and neither medical nor legal decisions should be based solely on its contents. Both editions of this book have been reviewed by legal counsel. The authors and publisher thank both attorneys for their assistance. ∫ 1993, 2007 The Johns Hopkins University Press All rights reserved. Published 2007 Printed in the United States of America on acid-free paper 9 8 7 6 5 4 3 2 1 The Johns Hopkins University Press 2715 North Charles Street Baltimore, Maryland 21218-4363 www.press.jhu.edu Library of Congress Cataloging-in-Publication Data Doukas, David John. Planning for uncertainty : living wills and other advance directives for you and your family / David John Doukas, William Reichel. — 2nd ed. p. cm. — (Johns Hopkins Press health book) Includes index. isbn-13: 978-0-8018-8607-2 (hardcover : alk. paper) isbn-13: 978-0-8018-8608-9 (pbk. : alk. paper) isbn-10: 0-8018-8607-4 (hardcover : alk. paper) isbn-10: 0-8018-8608-2 (pbk. : alk. paper) 1. Right to die—United States. 2. Medical care—Law and legislation—United States. 3. Power of attorney—United States. 4. Patients—Legal status, laws, etc.—United States. I. Reichel, William, 1937– II. Title. kf3827.e87d68 2007 344.7304%197—dc22 2006030212 A catalog record for this book is available from the British Library. To my parents, Aristides (Harry) Michael and Mary Anna Doukas, who taught me much about the relevance of one’s duties and virtues in life—with much love. D.J.D. To all those who taught me medical ethics, including the writings of Roger Bulger, M.D., about Hippocrates; and to Arthur J. Dyck, Ph.D., and Edmund Pellegrino, M.D., both of whom were very generous and wise. W.R. This page intentionally left blank Contents Preface ix Acknowledgments xi Introduction: What Every Person Needs to Know 1 1 What the Patient Self-Determination Act Means to You 15 2 When Is Treatment Beneficial and When Is It Not Beneficial? 25 3 How Ethical Principles Affect Health Care Decisions 37 4 The Value of Values 46 5 How Advance Directives Work 53 6 The Values History: Defining Your Health Care Values 69 7 You, Your Family, and Health Care Decisions: Choosing a Proxy 88 8 Signing Advance Directives 98 Appendix 125 Links to Advance Directive Forms by State 127 Other Useful Links 133 My Advance Directives for Future Medical Treatment 134 The Values History 138 Advance Directive in Brief Card 145 Index 147 viii Contents Preface s family physicians committed to the idea that patients have a right to express their preferences in medical care, Awe’re glad you’re reading this book. Much has happened in the health care world since the first edition of Planning for Uncertainty was published in 1993. Relevant events that were covered widely in the media, such as the Terri Schiavo case, laid open the problem of how we need to help our loved ones discon- tinue treatment in the face of family disagreement and schism. As a result, more people now recognize the importance of learn- ing about advance directives for medical care. We hope that this book will help you make decisions about your health care and inspire you to take action to ensure that your preferences are followed should you become unable to state your wishes. Both of us have seen many instances in which a simple state- ment of medical care preferences or the designation of an alter- nate decision maker has prevented undue, unwanted medical hardship on a patient and needless sorrow for the family. And, sadly, we have also seen many cases in which the lack of such a document caused family members great anguish and caused the patient to su√er needlessly, such as in the Schiavo case in Florida. As a result, we felt compelled to revise and rewrite our book explaining advance directives and the importance of understand- ing values and preferences—and the importance of conveying them to family and other loved ones.