A Paradigm for Making Difficult Choices in the Intensive Care Nursery

Abstract

In the 10 years since the birth of “Baby Doe,” the decisions confronted daily by neonatologists and parents of sick or premature infants have been the focus of a great deal of attention. Issues raised by these decisions have been vigorously debated and discussed in the popular media in political and governmental forums, and in the professional literatures of a variety of academic disciplines. These discourses have illuminated a number of moral and ethical principles that may govern these decisions and have contributed to the development of regulatory and procedural constraints upon this process, including requirements for establishment of infant care review committees at all hospitals that provide neonatal intensive care services. However, the philosophical concepts espoused by theoreticians, although often helpful as abstractions, are rarely invoked at the bedside as decisions are sought for individual patients. No clear consensus has emerged on how these ideas should be incorporated into clinical practice or on the role of mandated ethics committees or discretionary ethics consultants. Consequently, there are wide disparities in decision-making processes both within and among institutions. Failures of these systems to protect neonatal patients or their families remain distressingly common and have attracted considerable attention in the lay press. Although there can be no universal decision tree that can dictate the course of this complex process in all cases, a clearly articulated operative paradigm that defines essential features of an effective and equitable decision-making process is essential to identify the causes of failures and conflicts that arise when the process is dysfunctional and to prevent such problems by providing a framework for training practitioners to deal with these issues.