Survival at what cost? Origins and effects of the modern controversy on treating severely handicapped newborns

Abstract

This paper examines the background of technological innovation, ethical debate, and social change, against which the 1980s debate over how to treat severely handicapped newborns in general, and Baby Jane Doe in particular, took place. A commentary follows examining the relative place of government, practitioners, hospital ethics committees, and parents in making decisions about treatment for handicapped newborns.

KIE: Reiser traces the origins of current controversies in the care of handicapped newborns to the development of life-prolonging technologies, increased participation by patients and their families in decision making, greater federal involvement in determining medical policy, and public debate over prenatal diagnosis and abortion. He outlines the history of the Department of Health and Human Services' "Baby Doe" regulations, and the legal battles over the regulations and over the care of New York's "Baby Jane Doe." While acknowledging the government's legitimate interest in the fate of such infants, Reiser criticizes its current regulatory approach as intrusive and rigid. He concludes that, while the government, hospital ethics committees, physicians, and parents of seriously ill newborns should all participate in decision making, the parents bear the ultimate responsibility for these children and are entitled to society's financial assistance should they survive.