refusing care refusing care forced treatment and the rights of the mentally ill elyn r. saks the university of chicago press chicago and london Elyn R. Saks is the Orrin B. Evans Professor of Law and Psychiatry and the Behavioral Sciences at University of Southern California Law School and a research clinical associate at the Los Angeles Psychoanalytic Society and Institute. She is the author of Jekyll on Trial: Multiple Personality Disorder and Criminal Law and Interpreting Interpretation: The Limits of Hermeneutic Psychoanalysis. The University of Chicago Press, Chicago 60637 The University of Chicago Press, Ltd., London © 2002 by The University of Chicago All rights reserved. Published 2002 Printed in the United States of America 11 10 09 08 07 06 05 04 03 02 1 2 3 4 5 isbn: 0-226-73397-1 (cloth) Library of Congress Cataloging-in-Publication Data Saks, Elyn R., 1955– Refusing care : forced treatment and the rights of the mentally ill / Elyn R. Saks. p. ; cm. Includes bibliographical references and index. isbn 0-226-73397-1 (cloth : alk. paper) 1. Involuntary treatment. 2. Mental illness—Treatment. I. Title. [DNLM: 1. Commitment of Mentally Ill—United States. 2. Mental Competency—United States. 3. Mental Disorders—diagnosis—United States. 4. Restraint, Physical—United States. 5. Treatment Refusal—United States. wm 33 aa1 s27r 2002] rc343 .s245 2002 362.2Ј0973—dc21 2002020403 ᭺ϱ The paper used in this publication meets the minimum requirements of the American National Standard for Information Sciences—Permanence of Paper for Printed Library Materials, ansi z39.48-1992. For Will Vinet contents acknowledgments ix introduction 1 1 . Doctors and Lawyers: Why Can’t We All Just Get Along? 5 2 . Mental Illness: Making Myths or Genuine Disorders? 20 3 . Civil Commitment: How Civil? 44 4 . The Right to Refuse Medication: When Can I Just Say No? 84 5 . Seclusion: The Path of Least Resistance? 120 6 . Mechanical Restraints: Loosening the Bonds 146 7 . Incompetency and Impairment: Choices Made, Choices Denied 173 8 . Self-Binding: Ulysses at the Mast 201 9 . Conclusion 216 notes 223 references 257 index 293 acknowledgments Writing this book has been an important experience. Even more than my first two books, this book has deep personal meaning for me. I have worked in mental health law for years: as a legal advocate for the mentally ill, as a volunteer at a psychiatric hospital, as a therapist, and as a teacher. I care about the issues immensely. And I find them very difficult. What follows is my attempt to come to terms with these issues. Many people have contributed enormously to this project; I can’t thank them enough. I thank first the dean of the University of Southern Cali- fornia Law School, Matthew Spitzer, for making USC a wonderful place to work. I am very grateful to several reference librarians at the USC Law School, including Amy Atchinson, Laura Cadra, Corrin Gee, Jennifer Murray, Lee Neugebauer, and Jessica Wimer. I thank my assistants, Rose- mary Hendrix, Sheri Butala, Maureen Navarette, and Keith Stevenson, for their wonderful secretarial aid. For reading drafts and making many helpful comments, I thank Scott Altman, Thomas Lyon, Michael Shapiro, and Christopher Slobogin. One’s colleagues always help make one’s work much better than it would have been. I am especially grateful to Scott and Michael for continuing to read my work even though I am no longer a young academic. My youngest reader has been Adam Fraser, who, at fourteen, gave me very helpful comments. I am also grateful to Gladys Topkis for her expert editorial assistance. Several students furnished wonderful research assistance, includ- ing Vishta Farahani, Amy Feicht-Kay, Jennifer Hermann, Christopher Hopkins, Karala Jenkins, Cory Johnson, Bryan Kelly,David Pierce, Gregory Shamo, Heather Spragg, Carey Stone, Saji Thomas, Nadine Youssef, and Teri Zimring. I am most appreciative of their help. ix x . acknowledgments I also thank the people closest to me for being there: my parents, Bar- bara and Bert; my brothers, Warren and Kevin; my closest friends, Steve Behnke, Kenny Collins, and Esther Fine; my many other close friends; my analysts, the late Martha Harris, the late Stanley Jackson, Melvin Lansky, and Malcolm Hoffs; and finally, the person to whom this book is lovingly dedicated, Will Vinet. Will has added a dimension to my life that I never thought possible, and I owe him the deepest debt for so enriching my life. introduction It has been said that how a society treats its least well-off members says a lot about its humanity. Our treatment of the mentally ill says that Ameri- can society is inhumane. Sometimes the mentally ill are treated with ex- treme measures that the patients do not want: psychosurgery, electro- convulsive therapy (ECT), and unwanted medication with very serious risks and side effects. In addition, their liberty is taken away, sometimes for many years. Thus Kenneth Donaldson, for instance, was hospitalized for more than fifteen years, although he was dangerous to no one and able to hold down a good job; the prevailing standard allowed hospitalization for those simply in need of treatment. The pendulum then swings and the mentally ill are utterly neglected. The hospital wards are opened, and people are discharged with no care available. Many want treatment but are turned away from the hospital. Some blame the lawyers for a blind commitment to liberty rather than care. The real culprit is society for not providing less restrictive care in the community. The will to help those who want help is not there. Consider, when evaluating deinstitutionalization, that in 1983, in Oxford, England— a city of 125,000—there were forty-three group homes for deinstitution- alized patients. In New Haven, Connecticut—also a city of 125,000—in that same year there was one halfway house. Of course deinstitutionaliza- tion will fail without the needed resources in the community. In addition to swings between overintervention and neglect, there is widespread prejudice against the mentally ill. These are not unrelated phenomena, of course: we treat the mentally ill badly, one way or another, because we do not value them sufficiently as people. Stigma has been reduced for many other conditions and statuses: ho- mosexuality, cancer, AIDS. People talk openly about these situations; they join together in support groups; they write books and appear on television. 1 2 . introduction This is not to say that stigma is nonexistent for these other statuses and conditions, or that some people with mental illness are not just as open as people in these other categories. Still, there is a qualitative difference in the perception and treatment of mental illness and these other cases. “Mental illness” is among the most stigmatized of categories.1 People are ashamed of being mentally ill. They fear disclosing their condition to their friends and confidants—and certainly to their employers. Society is openly hostile to, scornful of, and frightened of the mentally ill. The media use terms and make comparisons that demean sufferers. Even in these days of political correctness in the classroom, students speak of “wackos,” “crazies,” “nutcakes,” “loonies”—even though they have been warned that some of their classmates probably have an illness themselves or have a loved one who does. People who would not dream of saying something racist or sexist in conversation with their friends say the same kinds of things. In the arena of mental illness the battle rages on, partly because the stigma is so great that people don’t come forward, partly because its suf- ferers are sometimes unable, as a result of their disabilities, to come for- ward, partly because society rationalizes that people with mental illness simply are different and deserve to be treated differently. This book explores the rational treatment of the mentally ill in contexts in which they say they do not want treatment. That is to say, it explores the “overinterventionist” pole of the swing in the way they are treated. It also tries to be mindful of the stigma that attaches to mental illness, thus asking when (if ever)—and why—sufferers should be treated differently than their non–mentally ill counterparts. Why, in this day of too little rather than too much intervention, do I study overintervention? There are a number of reasons. First, although the neglect of the mentally ill who want treatment is a huge problem, it is not a problem about which a law professor has much to say because it in- volves not theory but political will—the decision to use our resources in a humane and giving way. Second, in a world of limited resources, it makes sense not to impose treatment on those who should not be treated against their will. Dollars inappropriately spent on these people cannot be used to deliver services to people who truly want them or ought to get them. A rational policy of health care services requires that we think about these issues too. introduction .3 Third, although it is widely thought that insufficient care for those who want it dwarfs the problems of overintervention in the lives of those who do not want it, it seems to me that that has not been established by empirical studies. It is certainly true that there are many, many people who reject treatment offered them: they don’t go along with the Project Help types who come to see them on the streets; they don’t sign into hos- pitals; they insist on hearings to challenge their hospitalization; they bring further hearings after the automatic ones; they refuse treatment and force their treaters to establish their incompetency in court. In short, there are many people being treated today who do not want to be treated.