Although anencephaly(1) has long numbered among the host of congenital anomalies that may afflict newborn infants,(2) only within the past decade has the condition been associated with perplexing ethical and legal questions regarding the meaning of nonsentient life, the futility of medical care, and the propriety of live organ donation. From its relative obscurity, anencephaly has emerged to attain a certain notoriety in bioethical circles, a somewhat surprising fact given the relatively slight, and probably declining, incidence(3) of the condition.
Yet despite the relatively infrequent occurrence of actual controversies involving medical choices for infants with anencephaly, cases involving these infants may be significant far beyond their direct precedential value. For in one sense, cases involving infants with anencephaly provide the legal and medical communities with a paradigm for cases involving extremely, indeed ultimately, vulnerable patients who cannot make medical decisions for themselves. And in another sense, questions regarding choices for infants with anencephaly may reflect an embodiment of our collective moral confusion regarding the rights of, and our obligations to, those beings with whose existence we cannot truly empathize.(4)
One could hope, however, that even if our understanding of the moral implications of medical choices for infants with anencephaly were confused, our understanding of the legal implications of those choices might be clear. Unfortunately, that is not the case; the two federal laws most likely to affect medical choices for infants with anencephaly do so either indirectly or with some ambiguity. The older of the two laws, the Child Abuse Amendments of 1984 (the Amendments or CAA),(5) have received relatively little judicial or scholarly attention, and as a result its application remains something of a question mark. The other law--the Americans with Disabilities Act of 1990 (the Ada)(6)--while the subject of more extensive commentary, is yet in its interpretational infancy and remains largely enigmatic regarding its implications for medical decisionmaking.
This article's modest purpose is to attempt to clarify the impact of these statutes on medical decisions for infants with anencephaly. Without positing definitive answers, I offer a framework for recognizing the answers that the Congress and the courts have provided and for reaching reasoned conclusions on the questions that the lawmakers have not directly addressed. For this purpose, an initial exercise in classification may prove useful. Our recent historical experience with infants with anencephaly specifically, 'and disabled infants more generally, illustrates the three principal questions that emerge regarding the legality of medical decisions for infants with anencephaly. First, can parents legally decide to withhold medical treatment for an infant born with anencephaly? Second, can parents legally choose to donate for transplantation the organs of an infant with anencephaly while the infant is still alive? Third, can parents of an infant with anencephaly demand the provision of medical treatment for their infant when medical providers deem that treatment to be futile, or--to shift the focus of the question--can providers legally withhold from an infant with anencephaly medical treatment that the providers consider futile?
Before attempting to answer these questions, this article will place them in their historical context by briefly describing, first, the legal and moral controversy over selective nontreatment of infants with disabilities and, second, the ongoing debate regarding the use of living newborns with anencephaly as sources of transplantable organs. The background section then provides an account of In the Matter of Baby K,(7) the most recent case raising questions about medical choices for infants with anencephaly, and examines how that case ties into the more general debate currently raging in the medical and bioethics literature over the obligation of medical providers to provide medical treatment deemed futile. …