Which Babies Shall Live?: Humanistic Dimensions of the Care of Imperiled Newborns

225 Pages·1986·8.4 MB·English

by  Thomas H. Murray, Arthur L. Caplan (auth.), Arthur L. Caplan (eds.)

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 New-
borns. 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 1s t 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 per-
mission from the Publisher.
Preface
The fate of seriously ill newborns has captured the atten-
tion 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 handi-
capped, and perhaps other humans who are "less than" nor-
mal, 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 dis-
players 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 sociol-
ogy. 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 complex-
ity and their cultural roots.
Following an Introduction that summarizes the key pub-
lic 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 exam-
ines 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 caretak-
ers, as well as the infants, and considers the moral signifi-
cance of suffering in that context. A philosopher in the next
chapter subjects the widely favored "best interest of the in-
fant" 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 con-
cludes 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 contribu-
tions of the Humanities, and it refrains from offering "solu-
tions" where none are available. It is also written to be un-
derstandable 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 pro-
blems like the care of imperiled infants, and that the per-
spectives 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 Hast-
ings Center's Research Group on Ethics and the Care of New-
borns project, with the support of the March of Dimes, Up-
john 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 Benja-
min 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 Bris-
tow, 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 v
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
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