The extent to which clinicians are obligated to perform minimally beneficial interventions on children in the intensive care unit at the request of parents is hotly contested and a perennial source of moral distress for bedside providers. Pediatric intensivists must balance the good of the pediatric patient with respecting the authority of the parents to make medical decisions for their children. Parental authority for decision-making is grounded in the good of children and in the role of children as family members. While Mill’s Harm Principle is frequently cited in identifying the limits of parental authority, actually curtailing parental authority at the bedside of critically ill children is challenging. We turn to the Christian ethicist Paul Ramsey’s arguments about children in non-therapeutic research for assistance in navigating this difficult terrain. While Ramsey argued that children should generally not participate in non-therapeutic research, he recognized that a blanket prohibition could impact societal progress. Ramsey’s solution to society’s need to use children as means to an end in research was his admonition to “sin bravely” –recognizing that this was morally problematic terrain. Ramsey’s insights into the moral dimensions of children vis-à-vis their parents as decision makers can illuminate our contemporary clinical dilemmas in the pediatric intensive care unit. Using case examples, we suggest that there is overlap between nontherapeutic research and decisions about heroic interventions with limited benefits. This recognition allows us to explore the appropriate safeguards necessary to protect children while respecting the rights and responsibilities of all decision makers.
Christian Vercler, MD, MA, FACS, FAAP, HEC-C – Associate Professor, Director, Craniofacial Anomalies Program, Co-Chief, Clinical Ethics Service, Department of Surgery and Department of Neurosurgery, University of Michigan Medical School, Center for Bioethics and Social Sciences in Medicine