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DECIDING TO FORGO LIFE-SUSTAINING TREATMENT IN THE INTENSIVE CARE NURSERY: A SOCIOLOGIC ACCOUNT ANTHONY ROSTAIN* Introduction Advances in medical technology and the regionalization of infant intensive care units have resulted in the survival of babies who otherwise would have perished shortly after birth. Severely premature neonates and infants with significant congenital anomalies or life-threatening illnesses are now being saved with greater success. Along with the view that these developments represent impressive achievements has arisen a concern that large numbers of chronically ill and permanently handicapped individuals must now be cared for by their families and by society . The economic, social, and emotional burdens of caring for such children are becoming a central issue for public debate. Increasingly the question is asked: "What kind of life is being saved?" In cases where this life appears to be one ofendless suffering, profound mental retardation, or permanent coma, the question becomes "Why?" For physicians, nurses, and parents, these questions have prompted lengthy, agonizing discussions surrounding the decision to discontinue life-sustaining treatment. Much of the time, the issues are framed in ethical terms. Attempts are made to derive principles for decision making by applying the categories of moral philosophy or ofjurisprudence Supported by the Robert Wood Johnson Foundation Clinical Scholars Program. The author acknowledges the invaluable encouragement and support provided by Renée Fox, Charles Bosk, and Douglas Richardson, as well as the tireless and enthusiastic assistance of Amy Esther Laub. Paper presented at the Annual National Meeting of the Robert Wood Johnson Foundation Clinical Scholars Program Howey-in-the-Hills, Florida, Octoer 29, 1984. *Division of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania 19104.© 1986 by The University of Chicago. AU rights reserved. 003 1-5982/87/3001-051 1 $01 .00 Perspectives in Biology and Medicine, 30, 1 ¦ Autumn 1986 \ 1 17 to clinical situations. The central problem for the participants then becomes "Who decides and on what basis?" The answers to these thorny questions, as well as the methods of arriving at them, have sparked tremendous controversy. Since the appearance of a landmark article by Duff and Campbell [1], medical writings on this topic have commented on the numerous ethical dilemmas arising in the intensive care nursery [2—7]. Most articles focus on the way decisions should be made, emphasizing guidelines and criteria for making "correct" decisions or defending a particular moral stance toward the issue. This is understandable given the complexity and novelty ofthe situation, the troubling uncertainties that surround the toughest cases, and the relative absence of agreed-on norms to guide practitioners and parents facing these terrible choices. Yet the existing literature is deficient in several respects. Most articles present cases out of context without elaborating the details of the actual decision-making process. The social reality in which moral, existential, and emotional questions of this magnitude are repeatedly encountered is virtually ignored. Variables such as the degree of uncertainty, the timing of events, the particular viewpoints of the participants, their evolving relationships, and the changing factual evidence brought to bear on the decision are rarely investigated. Terms such as "hopeless case," "quality of life," "the best interests of the child," and "the right to refuse treatment" are alluded to but remain ambiguous insofar as they are defined by the actors in the setting. Finally, the ethical focus of most medical articles emphasizes abstract principles and presents an idealized version of existing practices. The analysis is rarely embedded in the social and cultural framework in which decisions to "pull the plug" actually take place. A recent text on this subject [8] fails to offer a sociologically coherent picture of the decision-making process. The case vignettes presented are framed in ways that highlight their ethical dimensions, leaving the reader relatively uninformed about the actual unfolding of events and the complexity of viewpoints represented in the discussions. The purpose of this study is to describe the ways in which decisions to forgo life-sustaining treatment are actually made in the intensive care nursery. It addresses the following questions: How does the discussion to discontinue life support arise? Who participates in the discussion? What gets said? How does the decision get made? Who makes the...

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