Severely Handicapped Infants with Life-Threatening Conditions: Federal Intrusions Into the Decision Not To Treat

Abstract

In recent years the federal government has attempted to intervene in certain family-medical decisions to withhold treatment from seriously handicapped newborns with life-threatening conditions. Invoking section 504 of the Rehabilitation Act of 1973, which prohibits discrimination against "otherwise qualified handicapped" individuals, the Reagan Administration promulgated regulations allowing federal government investigations of such decisions. Recently, the U.S. Supreme Court upheld lower court decisions invalidating these "Baby Doe" regulations. The federal government's fall-back position is reflected in the Child Abuse Prevention and Treatment Amendments of 1984, requiring states accepting funds under the Child Abuse Prevention and Treatment Act to establish and maintain procedures to assure that cases of medical neglect of handicapped infants are investigated by the states. Although the primary oversight of parental decision-making has been returned to the states where it has traditionally belonged, the federal government's definition of medical neglect of handicapped infants with life-threatening conditions is an ethically inadequate response to the complex needs of the handicapped child, the family, the medical profession, and society as a whole. After examining the relevance of Kantian, utilitarian, and Rawlsian ethical positions, the author contends that an effective governmental policy, capable of enforcement and acceptance by the public, must utilize the strengths of each philosophy and reflect the pragmatism of American society.