Deciding Who Lives

In this probing look at the reality of everyday choices in neonatal intensive care units, Renee Anspach explores the life-and-death dilemmas that have fueled debate. Drawing on case studies, she examines the roles of parents, doctors, nurses and bioethicists in deciding whether critically ill newborns - be they premature, terminally ill or severely malformed - should be saved by medical technology, or at least kept alive a little longer. Using case studies taken during 16 months of extensive interviewing and observation in two neonatal intensive care units, Anspach examines decision-making about damaged newborns. Drawing on the comments of doctors, nurses and parents as they discuss the fates of these infants, she investigates how physicians and nurses predict the outcome of particular cases and why they often disagree, how parents are involved in life-and-death decisions, and how conflicts between parents and professionals are handled. Persistent tensions surface between doctors, who depend on "clinical data" and "objective facts", and nurses, who make more subtle and nuanced evaluations of infants.
In many cases, parents are not directly asked for their consent to a plan of action; rather, their agreement to decisions already made by health professionals is solicited. Socio-economic factors, such as educational background and ethnicity, are important in determining the amount of power parents will have in this process. Anspach also considers the social issues raised by neonatal intensive care, particularly the paradox posed by investing huge sums of money in technology to correct defects while at the same time giving low priority to resources for preventive care. She calls for the development of ethical principles that move beyond deciding the individual case and focus on a more equitable and just distribution of society's resources.