Which Babies Shall Live?

Which Babies Shall Live?

CONTEMPORARY ISSUES IN BIOMEDICINE, ETHICS, AND SOCIETY Which Babies Shall Live?, edited by Thomas H. Murray and Arthur L. Caplan, 1985 Feeling Good and Doing Better, edited by Thomas H. Murray, Willard Gaylin, and Ruth Macklin, 1984 Ethics and Animals, edited by Harlan B. Miller and William H. Williams, 1983 Profits and Professions, edited by Wade L. Robison, Michael S. Pritchard, and Joseph Ellin, 1983 Visions of Women, edited by Linda A. Bell, 1983 Medical Genetics Casebook, by Colleen Clements, 1982 Who Decides?, edited by Nora K. Bell, 1982 The Custom-Made Child?, edited by Helen B. Holmes, Betty B. Hoskins, and Michael Gross, 1981 Birth Control and Controlling Birth, edited by Helen B. Holmes, Betty B. Hoskins, and Michael Gross, 1980 Medical Responsibility, edited by Wade L. Robison and Michael S. Pritchard, 1979 Contemporary Issues in Biomedical Ethics, edited by John W. Davis, Barry Hoffmaster, and Sarah Shorten, 1979

Which Babies Shall Live? Humanistic Dimensions of the Care of Imperiled Newborns Edited by Thomas H. Murray and Arthur L. Caplan Humana Press Clifton, New Jersey

Library of Congress Cataloging in Publication Data Main entry under title: Whieh babies shall live? (Contemporary issues in biomedicine, ethics, and society) "Product of the Hastings Center's Research Group on Ethics and the Care of Newborns project"-acknowledgments. Includes bibliographies and index. 1. Infants (Newborn)-Diseases---Treatment Moral and ethical aspects. 2. Euthanasia- Moral and ethical aspects. 3. Infanticide- Moral and ethical aspects. I. Murray, Thomas H. II. Caplan, Arthur L. III. Hastings Center. Research Group on Ethics and the Care of Newborns. IV. Series. RJ255.VV49 1985 362.1'989201 85-18058 ISBN-13: 978-1-4612-9392-7 e-isbn-13: 978-1-4612-5000-5 DOl: 10.1007/978-1-4612-5000-5 1985 The Humana Press Inc. Softcover reprint of the hardcover 1 st edition 1985 Crescent Manor PO Box 2148 Clifton, NJ 07015 All rights reserved No part of this book may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, microfilming, recording, or otherwise without written permission from the Publisher.

Preface The fate of seriously ill newborns has captured the attention of the public, of national and state legislators, and of powerful interest groups. For the most part, the debate has been cast in the narrowest possible terms: "discrimination against the handicapped"; "physician authority"; "family autonomy." We believe that something much more profound is happening: the debate over the care of sick and dying babies appears to be both a manifestation of great changes in our feelings about infants, children, and families, and a reflection of deep and abiding attitudes toward the newborn, the handicapped, and perhaps other humans who are "less than" normal, rational adults. How could we cast some light on those feelings and attitudes that seemed to determine silently the course of the public debate? We chose to enlist the humanities-the displayers and critics of our cultural forms. Rather than closing down the public discussion, we wanted to open it up, to illuminate it with the light of history, religion, philosophy, literature, jurisprudence, and humanistically oriented sociology. This book is a first effort to place the hotly contested Baby Doe debate into a broader cultural context. We expect this book to appeal to all those interested in the debate over our treatment of seriously ill newborns. Nurses, physicians, and social service professionals, along with those interested in the public policy debate-lawyers, people in government, and concerned laypersons-join philosophers and other humanists as the primary audience for Which Babies Shall Live? We do not expect that this book will "solve" the problem of ill newborns. We do believe, however, that the perspectives it brings will deepen the reader's understanding v

vi Preface of the issues, and generate a healthy respect for their complexity and their cultural roots. Following an Introduction that summarizes the key public cases in which a decision was made not to treat a newborn, the book is organized into four sections. The first section, "The Child, Medicine, and Science," sets the stage with a neonatologist's description of the history and current state of neonatology. Next an historian of youth and the family examines the long-standing tension between scientific judgments of what is "best" for children, and the resistance to those judgments. An historian and a lawyer close the section with their critical commentaries. The next section, "Religion, Suffering, and Morality," begins with a theologian's discussion of the ways our religious traditions have regarded infants. Then comes a chapter that reflects on the prevalence of suffering in neonatal intensive care, including the suffering of parents and caretakers, as well as the infants, and considers the moral significance of suffering in that context. A philosopher in the next chapter subjects the widely favored "best interest of the infant" principle to careful scrutiny, and shows how our belief that we know what the principle means or how it can be applied may be ill-founded. Finally, a lawyer who directs an "ethics consult team" in a hospital discusses privacy as a consideration in the refusal of care for newborns. A provocative literary critic and author opens the third section, "Images of the Abandoned," with a plea to respect the diversity of human forms, especially "abnormality" in its many guises. Through his study of "freaks," the author concludes that our rejection of humans who look or act differently from ourselves may rob us of the richness of variations that are a source of human strength. This section ends with a rejoinder by a philosopher. The fourth section, "Caretakers and Attitudes," reports the results of a survey taken at the symposium for which the other papers were originally composed. The survey posed many of the central questions about what principles should govern decisions about ill newborns, and who should make those decisions. For the first time, detailed information is available about the beliefs and attitudes of those involved in

Preface vii caring for these babies, including nurses and physicians. The volume ends with a chapter that sums up the main themes of the book. Which Babies Shall Live? is unique in its approach. It is thoroughly interdisciplinary, it concentrates on the contributions of the Humanities, and it refrains from offering "solutions" where none are available. It is also written to be understandable by intelligent people who are not specialists in any of the disciplines on display. We fervently hope that readers of this book will come away with an enriched understanding of the cultural context in which the Babies Doe have been born, and some, at least, have died. We further hope that readers will see that the humanities are indispensable to a full understanding of problems like the care of imperiled infants, and that the perspectives offered by the humanities will help us to appreciate the richness and depth of other problems as well. Thomas H. Murray Arthur 1. Caplan

Acknowledgments This volume is the first book-length product of The Hastings Center's Research Group on Ethics and the Care of Newborns project, with the support of the March of Dimes, Upjohn Company, Squibb, and the Pew Memorial Trust. The Research Group's work continues, and more publications are expected, but we owe special thanks to the individuals and institutions who aided us in our early attempts to identify and clarify ethical issues in the care of imperiled newborns. The Montefiore Hospital and Medical Center and our colleagues there, John Arras, Nancy Dubler, and Alan Fleischman, deserve a special thank you: the individuals, for their advice and unstinting support; the Medical Center for its co-sponsorship of the conference on which this book is based. Also, we would like to thank the administration at the Benjamin F. Cardozo School of Law, which graciously permitted us the use of not one, but two auditoriums for the day of the program, and especially Alan Weisbard, lawyer, friend, critic, and advocate for the conference. Someone had to pay for all this, and in this instance the credit (or rather the debits) went to the New York Council for the Humanities. We thank our Program Officer, Edward Bristow, and the Director, Jay Kaplan, for their encouragement. Lastly, we must thank our coworkers at The Hastings Center, especially Mary Gualandi, Eva Mannheimer, and Eric Feldman, without whose efforts we would have ended up having our speakers meet at a corner booth at the Empire Diner with three people who wandered in off the street. ix

CONTENTS Preface Acknowledgments... ix Contributors... xv Introduction-Beyond Babies Doe... 1 Thomas H. Murray and Arthur L. CapLan The Child, Medicine, and Science Caring for Babies in Danger: The Evolution and Current State of Neonatology... 15 Alan R. Fleischman Science and Controversy in the History of Infancy in America... 23 Joseph F. Kett Response to "Science and Controversy in the History of Infancy in America"...... 39 Margaret O'Brien SteinfeLs Which Babies Shall Live?-Comment on "Science and Controversy in the History of Infancy in America"... 47 ALan J. Weisbard xi v

xii Preface Religion, Suffering, and Morality Our Religious Traditions and the Treatment of Infants............ 59 David H. Smith "Suffer the Little Children... " Suffering and Neonatal Intensive Care... 71 Thomas H. Murray Ethical Principles for the Care of Imperiled Newborns: Toward an Ethic of Ambiguity......... 83 John D. Arras The Right to Privacy as a Protection for the Right to Refuse Care for the Imperiled Newborn... 137 Nancy N. Dubler Images of the Abandoned The Tyranny of the NormaL... 151 Leslie A. Fiedler Comment on "The Tyranny of the Normal"... 161 Ruth Macklin

Preface xiii Caretakers: Images and Attitudes Consensus and Controversy in the Treatment of Catastrophically III Newborns: Report of a Survey... 169 Betty Walder Levin Conclusion... 207 Arthur L. Caplan Index... 219

Contributors JOHN D. ARRAS Department of Epidemiology and Social Medicine, Albert Einstein College of Medicine, Montefiore Hospital and Medical Center, Bronx, NY ARTHUR L. CAPLAN The Hastings Center, Hastings-on-Hudson, NY NANCY N. DUBLER Department of Social Medicine, Montefiore Hospital and Medical Center, Bronx, NY LESLIE A. FIEDLER Department of English, SUNY-Buffalo, Buffalo, NY ALAN R. FLEISCHMAN Montefiore Hospital and Medical Center, Bronx, NY JOSEPH F. KETT Department of History, University of Virginia, Charlottesville, VA BETTY WOLDER LEVIN Division of Sociomedical Sciences, Columbia School of Public Health, New York, NY RUTH MACKLIN Department of Community Health, Albert Einstein College of Medicine, Bronx, NY THOMAS H. MURRAY Institute for the Medical Humanities, The University of Texas Medical Branch, Galveston, TX DAVID H. SMITH Department of Religious Studies, Indiana University, Bloomington, IN MARGARET O'BRIEN STEINFELS National Pastoral Life Center, New York, NY ALAN J. WEISBARD Cardozo School of Law, Yeshiva University, New York, NY xv