Special Care: Medical Decisions at the Beginning of Life

Intensive care medicine today is as close to the miraculous as most of us are likely to see in our lifetime. Nowhere is this magic more effectively practiced than in neonatal nurseries. Infants who are born prematurely at twenty-four weeks gestation and who weigh less than a pound can now be treated successfully. No other type of medicine has a more dramatic payoff, for the infants who survive can look forward to seventy or more years of life. But there is a dark underside to the exercise of these skills. A growing number of babies live only to be tethered to life-support systems, unconscious or suffering incessant pain for years and sometimes for the duration of their lives. The ethical issues raised by these children are among the most difficult in our society. Should life be maintained no matter what its quality? Or is there a point at which treatment should be stopped on humane grounds? Who is to make decisions on continuing or ending therapy for damaged children? Is the law a suitable instrument for regulating medical decisions in intensive care nurseries? Should the growing cost of intensive care influence therapy decisions? "Special Care" explores the moral and legal issues in neonatal intensive care. Fred M. Frohock spent four months in a special care nursery, observing the daily actions of doctors and nurses and interviewing staff and parents of patients. This engaging, human drama is told through the author's own journal entries interspersed with generous excerpts from taped interviews that display the practical reasoning of staff and parents as they address the moral problems raised by intensive care medicine. Several case studies of infants highlight the often contradictory directions in which medical staffs are pulled and the painful decisions that doctors and parents together are often called upon to make. The result is a book that reconstructs the ordinary life of a neonatal nursery and presents the moral views of those who are most intimately involved in therapy decisions. This book is an urgently needed entry in the current discussions of treatment for badly damaged babies. Frohock argues that our tradition of "rights "language, which rests on the premise that we know what a human being is, is inappropriate when dealing with the paradoxes of decision making in neonatal nurseries. Calling for a new moral vocabulary better adapted to the world of medicine, he introduces the notion of "harm" in place of rights, a concept drawn from medicine's Hippocratic oath that pledges to "do no harm," as a way to begin framing questions and making decisions. "Special Care" will interest anyone who wants to understand medical decisions at the margins of human life.