The Rights of Patients

The Rights of Patients

AN AMERICAN CIVIL LlBERTIES UNION HANDBOOK THE RIGHTS OF PATIENTS THE BASIC ACLU GUIDE Ta PATIENT RIGHTS SECOND EDITION Completely Revised and Up-to-Date by George }. Annas Springer Science+Business Media, LLC

Copyright 1989, 1992 by George J. Annas and the American Civil Liberties Union. Originally published by Humana Press in 1989,1992 Softcover reprint of the hardcover 2nd edition 1992 AII rights reserved. Library of Congress Cataloging-in-Publication Data Annas, George J. The rights of patients: the basic ACLU guide to patient rights George J. Annas.-2d ed., completely rev. and up-to-date. p. cm.-(an American Civil Liberties Union handbook) Rev. ed. of: The rights of hospital patients, 1975. Includes bibliographical references and index. 1. Hospital patients-legal status, laws, etc.-united States. 2. Hospitals-law and legislation-united States. 1. Annas, George. J. Rights of hospital patients. II. Title. III. Series. KF3823.A96 1989 344. 73'03211-<:1c19 [347.3043211] 88-29893 ISBN 978-1-4612-6743-0 ISBN 978-1-4612-0397-1 (ebook) CIP DOI 10.1007/978-1-4612-0397-1 This publication is printed on acid-free paper. e

To the sick, and the healers who treat them as persons

Contents Preface Acknowledgments Introduction ix XI XIII I. The Patient Rights Movement 1 II. How Hospitals Are Organized 17 III. Rules Hospitals Must Follow 34 IV. Emergency Medicine 50 V. Admission and Discharge 67 VI. Informed Consent 83 VII. Surgery 104 VIII. Pregnancy and Birth 120 IX. Human Experimentation and Research 141 X. Medical Records 160 XI. Privacy and Confidential ity 175 XII. Care of the Dying 196 XIII. Death, Organ Donation, and Autopsy 226 XIV. Medical Malpractice 239 XV. The Patient Rights Advocate 258 Appendixes A Other Resources 275 B. Patient Bill of Rights Act 283 C. Sample Living Will and Durable Power of Attorney 292 D. Right to Refuse Treatment Act 296 E. How to Use Law and Medical Libraries 301 Index 306 VII

Preface This guide sets forth your rights under the present law and offers suggestions on how they can be protected. It is one of a continuing series of handbooks published in cooperation with the American Civil Liberties Union (ACLU). Surrounding these publications is the hope that Americans, informed of their rights, will be encouraged to exercise them. Through their exercise, rights are given life. If they are rarely used, they may be forgotten, and violations may become routine. This guide offers no assurances that your rights will be respected. The laws may change, and in some of the subjects covered in these pages, they change quite rapidly. An effort has been made to note those parts of the law where movement is taking place, but it is not always possible to predict accurately when the law will change. Even if the laws remain the same, their interpretations by courts and administrative officials often vary. In a federal system such as ours, there is a built-in problem since state and federal law differ, not to speak of the confusion between states. In addition, there are wide variations in the ways in which particular courts and administrative officials will interpret the same law at any given moment. If you encounter what you consider to be a specific abuse of your rights, you should seek legal assistance. There are a number of agencies that may help you, among them ACLU affiliate offices, but bear in mind that the ACLU is a limited-purpose organization. In many communities, there are federally funded legal service offices that provide assistance to persons who cannot afford the costs of legal representation. In general, the rights that the ACLU defends are freedom of inquiry and expression; due process of law; equal protection of the laws; and privacy. The authors in this series have discussed other rights (even though they sometimes fall outside the ACLU's usual concern) in order to provide as much guidance as possible. IX

x Preface These books have been planned as guides for the people directly affected: thus the question and answer fonnat. (In some areas, there are more detailed works available for experts.) These guides seek to raise the major issues and infonn the nonspecialist of the basic law on the subject. The authors of these books are themselves specialists who understand the need for infonnation at "street level." If you encounter a specific legal problem in an area discussed in one of these handbooks, show the book to your attorney. Of course, he or she will not be able to rely exclusively on the handbook to provide you with adequate representation. But if your attorney hasn't had a great deal of experience in the specific area, the handbook can provide helpful suggestions on how to proceed. Norman Dorsen, PAST PRESI DENT American Civil Liberties Union The principal purpose of this handbook, as well as others in this series, is to inform individuals of their legal rights. The authors from time to time suggest what the law should be, but their personal views are not necessarily those of the ACLU. For the ACLU's position on the issues discussed in this handbook the reader should write to Librarian, ACLU, 132 West 43d Street, New York, NY 10036.

Acknowledgments I am pleased to acknowledge the insights of my law, medicine, and public health students over the past decade and a half; many of them will find their questions reflected in this book. My health law colleagues, including Leonard Glantz, Barbara Katz, Wendy Mariner, Frances Miller, John Robertson, and Ken Wing, have consistently been generous with their comments and critiques over the years. Special thanks are due to Joseph M. Healey, who was kind enough to again review the entire manuscript and who is responsible for many of the ideas in this book. Michael Grodin and John Tobias Nagurney also made constructive suggestions. I was helped along the way by dozens of research assistants, all of whom I am indebted to. Those who had the most influence over the fmal text include Scott Berman, Joan Densberger, Sherry Liebowitz, Martha Neary, and Elizabeth Truesdell. Mary Lou Hannigan, assisted by Trudy David, deserves more of an acknowledgment than these words convey for putting the fmal manuscript in useful form. All of the physicians, lawyers, and judges I have had the privilege to teach the issues addressed in this book have all contributed to my thinking on patient rights through their questions and comments. The consistent support of my work on patient rights over the past decade by the Boston University School of Public Health, Concern for Dying, and the Rubin Family Fund made this edition possible. XI

Introduction The most powerful concept shaping the practice of modern medicine is the recognition that patients have human rights. Respect for these rights can transform the doctor-patient relationship from one characterized by authoritarianism to a partnership and simultaneously improve the quality of medical care. The increasing sophistication of medical technology has tended to distance the doctor from the patient and to make the hospital an alien and alienating environment. By demanding that patients be treated as unique human beings, the recognition of human rights in health care can humanize both the hospital and the encounters with physicians and other health care professionals. Although we try not to think about it, medical care is central to many major life events: from birth to death, from accidents and disability to illness and incapacitation. In the United States, thirtyfive million Americans are hospitalized annually, and we spend more than one-half trillion dollars on medical care each year, 12 percent of our gross national product. We worry about our lives, our health, and our money. We often consider our rights only after something has gone wrong; and then lawsuits are high on our list of possible reactions. This is a mistake. Preventing violations of our rights is a much more constructive and effective approach than legal "treatment." We must all be active participants in making medical treatment decisions, because these decisions can have such a profound effect on our bodies and our lives. Medical decisions are fundamentally personal decisions; different people place different values on longevity, risk, functioning, and bodily appearance. Economics and technology often seem to dictate choices-and the recognition of human rights is the only force powerful enough to prevent medicine from becoming an impersonal and dehumanizing industry. XIII

XIV Introduction This book is built on three fundamental premises: (1) the American medical consumer has rights that are not automatically forfeited on entering a health care facility or a doctor-patient relationship; (2) many facilities and physicians fail to recognize the existence of these interests and rights, fail to provide for their protection and assertion, and limit their exercise without effective recourse to the patient; and (3) a doctor-patient partnership in which patient rights and personhood are respected is the most beneficial model for medical decision making for both patients and physicians. Patients are not required to check their rights, along with their other valuables, when they enter a health care institution. Human rights merit strong protection by their very nature. And the protection of human rights in health care can improve the quality of life of both providers and patients, and the quality of care itself. Many of the legal rights of patients have been enunciated by the courts, often in the context of malpractice suits brought against physicians and hospitals by injured patients. Successful suits d,emonstrate that the physician not only injured the patient, but did so as a result of negligent conduct. Cataloging these cases, as is necessary to expose and explain the legal rights of patients, can present health care providers and institutions in a less-than-favorable light. Knowledge of these cases, however, is essential to an understanding of the rights patients have, and why they have been enunciated and supported by the courts. It is not the purpose of this book to castigate medical professionals for past misdeeds, it is as inaccurate to term the support of patient rights "antimedicine," as it is to term support of the Bill of Rights "antiamerican." Nor is being pro-patient in any way "antidoctor." All doctors worthy of the title are pro-patient, and those who are not deserve no respect. The purpose of this book is to inform both patients and their providers of their legal rights in the hope that this information will encourage a more open and mutually satisfying physician-patient partnership. The first edition of this book, published in 1975, was entitled The Rights o/hospital Patients. This edition deletes the adjective. Hospital care accounts for significantly more than half of all health care expenditures (when physician charges for hospital care are

Introduction xv added to hospital charges), and most serious injuries to patients occur in hospitals. But there is more to medicine than hospital care; and the basic rights people have are based not on where they are treated but on what they are. Patients have rights because they are persons, not because they are in or out of a hospital. Although the focus of the hospital is retained in this book, as it is in medicine, the rights discussed also apply in the physician's office, outpatient clinic, HMO surgicenter, nursing home, and other health care settings as well. The book has been entirely revised and updated to reflect the medical and legal developments of the past decade and a half. The chapter titles are descriptive of the subject matter covered in each. They have been completely rewritten, but the format of the first edition is followed with only two exceptions. The first is that the chapter on payment has been eliminated. Obviously, payment is a critical issue, but it is strictly speaking an "economic rights" issue rather than a "legal rights" issue. The "right to health care" should be recognized as an economic entitlement in this country, and it is a national disgrace that 40 million Americans have no health insurance, and millions of others have inadequate coverage. The AIDS epidemic highlights the urgency of addressing this issue by showing how unfair and inefficient our current system is. Nonetheless, the "right to health care" is distinct from "rights in health care"; and the latter is what this book is all about. The second is that separate chapters on women and children have been eliminated. The subjects previously covered in these chapters now appear in the chapters "Pregnancy and Birth" and "Surgery." Issues specific to mental health are dealt with in another book in this series. Most of the source material cited in the notes is available in law and medical libraries. Appendix E contains a guide to these libraries for those interested in locating original source material or conducting their own research of a topic. Appendix A lists other resources consumers can turn to, including organizations involved in patient rights and an annotated bibliography. Appendixes B and D set forth "model" legislation on patient rights in general and the right to refuse treatment in particular, and Appendix C contains a sample "living will"

XVI Introduction This book is primarily a reference book for patients, their friends and family, and health care providers. It has also been used as a textbook for medical students and nursing students and should be required reading for medical house staff. Even if you are unable (or unwilling) to read the book, people have reported that their care in hospitals has improved simply by having the book on their bedside table. There is no controlled study on this, but rights safeguard us all, sometimes even when we are unaware of their existence. This book is written to encourage patients to exercise their rights and to help health care professionals recognize and respect these rights. The goal is to resist the dehumanizing effects of medical technology and cost-containment by reasserting the primacy of the individual patient As was the first edition, this book is again dedicated "to the sick, and the healers who treat them as persons."