Selective nontreatment of handicapped newborns: A critical essay

The neonatal intensive care unit is the site of some of the most dramatic technology, complex decision-making and costly activity in the current range of medical institutions. Thus, the decisions made there are particularly visible, and of concern to a society which has increasingly scrutinized and challenged medical practices. Questions of marginal utility and cost-benefit relationships are becoming increasingly prominent. These concerns are heightened by the social and political tensions over issues of the time of initiation of life, quality of life, and assurances of equity for those less well off or handicapped from birth. Robert Weir's book, Selective Nontreatment of Handicapped Newborns, successfully summarizes the current dilemmas and identifies areas of uncertainty and lack of knowledge which cloud the decision-making processes. The book reviews the positions of the major protagonists of the last several years; inevitably, their positions will undergo continuous evolution in response to new data and vigorous political and public policy activity. Weir appropriately identifies the difficulty in arriving at an accurate prognosis as an important and prominent problem in decision-making about defective newborns. The population of surviving, compromised newborns is relatively unfamiliar and their problems remain largely unstudied. Weir's discussion of the desirability of the establishment of Infant Care Review Committees in those institutions which care for defective and handicapped newborns thoughtfully concludes that such committees are, on the balance, desirable. As experience accumulates with Infant Care Review Committees, they should serve the positive purpose of generating open discussion of legitimate disagreements. These committees will provide a forum in which decision-makers can disclose uncertainty, consider alternatives, and receive counsel. To achieve this purpose, the committees must be appropriately structured, and explicitly defined as deliberative rather than judgmental in intent. Infant Care Review Committees should ideally serve the interests both of society and of medicine in reassuring the public that critical decisions about defective newborns are not made capriciously, and are not influenced by professional coercion or conspiracy. The increased visibility of the decision-making process may help to restore the eroding public confidence in the medical professions as well as to increase the level of knowledge among both professionals and lay people concerning the difficult choices faced in contemporary neonatal medicine.