Infants with anencephaly, the ADA, and the Child Abuse Amendments.

• Author: Crossley, Mary A.

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.

After providing that background, this article reviews the provisions of the Child Abuse Amendments and the ADA to assess what guidance those statutes offer for answering the questions posed above. Ultimately, this article concludes that the federal statutes distinguish between medical decisions made by the parent of an infant with anencephaly, who is accorded discretion to choose whether or not to seek life-sustaining medical treatment, and decisions made by health care providers, who face potential liability if their decisions are based on the infant's disability.

Setting the Scene: Background Regarding Medical Choices for Infants with Anencephaly

Infants with Disabilities and Selective Nontreatment

A precursor to legal debates over treatment decisions for infants with anencephaly can be found in the more general debate regarding medical decisionmaking for newborns with significant disabilities. The archetypal case of selective nontreatment, the notoriety of which stimulated extensive moral and legal discussion(8) and spurred multiple regulatory responses, involved an infant, dubbed "Baby Doe," born with Down syndrome and an esophageal obstruction. The latter condition, which precludes normal feeding, is easily correctable by surgery; the former condition, which produces varying degrees of mental retardation, is a genetic condition that cannot currently be treated. Because of the infant's Down syndrome, Baby Doe's parents decided not to provide him with surgery to correct his digestive obstruction, but instead to allow him to the of starvation.(9) Baby Doe's slow dying over a period of six days generated a public hue and cry and resulted in a national debate over the withholding of treatment from infants with disabilities.

In addition to public debate, Baby Doe's death also catalyzed a series of responses by the federal government. The first response essentially attacked selective nontreatment as a problem of disability discrimination: The Department of Health and Human Services (HHS) issued regulations alerting hospitals receiving federal funds that a failure to provide treatment in the hospital to infants with disabilities would be deemed a violation of section 504 of the Rehabilitation Act. The regulations also required hospitals to post notices to that effect in newborn nurseries and provided for access to records and expedited investigations of alleged violations. After being litigated in several lower courts,(10) however, these regulations ultimately succumbed to a challenge in the Supreme Court.

In Bowen v. American Hospital Association,(11) a plurality of the Court struck down the regulations as lacking an evidentiary basis in the administrative record. Specifically, the Court reasoned that section 504 was inapplicable to parental refusals to consent to treatment; that in the absence of parental consent an infant was not "otherwise qualified" to receive medical treatment; and that, as a result, the lack of evidence that hospitals withheld treatment authorized by an infant's parents signaled HHS's failure to demonstrate a need for the regulations.(12) While striking down the regulations, however, the Court declined to determine whether section 504 might ever apply to medical treatment decisions for infants.(13)

Thus the federal government's attempt to attack selective nontreatment as a problem of disability discrimination under section 504 failed. An alternative response to Baby Doe's story fashioned by Congress during the same time period, however, has proved more enduring. in the Child Abuse Amendments of 1984, Congress addressed selective nontreatment as a child welfare problem, to be properly handled within the regulatory realm of state child welfare law. To induce the states to address the problem, the CAA require states, as a condition of receiving federal funding under the Child Abuse Prevention and Treatment Act, to have in place policies and procedures for the reporting of and responding to incidents of medical neglect,(14) a term that the statute defines as including, with a few exceptions, the failure to provide medically indicated life-sustaining treatment to infants with disabilities.(15) Although commentators have questioned their impact and effectiveness, the Child Abuse Amendments remain in place today as the legislation most directly affecting medical decisions for newborns with disabilities.

Infants with Anencephaly and Organ Donation

After the furor of the early 1980s over the legality and morality of nontreatment decisions for infants with disabilities abated somewhat, a new debate arose, this time focused specifically on proposals that infants with anencephaly be used as live organ sources for infants and children needing organ transplantation. This controversy arose as a result of a number of factors. As an initial proposition, transplantable organs can legally be retrieved only from donors who have already died--the so-called Dead Donor Rule.(16) The general scarcity of organs for transplantation is exacerbated for children and infants needing lifesaving transplantation because they are generally unable to use adult organs and relatively few children and infants the under circumstances that would make their organs suitable for donation. Living infants with anencephaly are perceived by some people to present a fertile pool of potential organ sources to alleviate this scarcity; but while their brain stems function, they do not meet existing legal standards for death. In most cases, however, by the time an infant with anencephaly dies naturally, his or her organs have been so damaged by gradual oxygen deprivation that they are no longer suitable for transplantation.(17) This combination of factors sets the stage for proposals either that exceptions be made to the Dead Donor Rule to allow the retrieval of organs from living infants with anencephaly...