Abstract

The two cases presented here may at first seem very different: one patient was an adult, making autonomous decisions for herself and her fetus; the other was a child too young to meaningfully participate in the most significant decisions regarding his health. In both cases, healthcare professionals had to determine the extent to which the parents of a dying fetus or child should be permitted to make agonizing choices about how long to maintain hope and what that death will look like; and in both, health professionals’ prognostications influenced their judgments about the patients’ best interests and whether they were candidates for certain interventions. While members of both healthcare teams questioned the patients’ and families’ ability to objectively consider the risks and benefits, the families were focused on the need to be able to live with the decisions made, regardless of outcome. Clinicians expressed unwillingness to perform physical actions they felt were more likely to promote harm and suffering than benefit, and experienced attendant moral distress in the face of conflicting values. In this regard, these cases are mirror images: only in the first case did the clinician, an obstetrician, have sufficient professional authority to refuse to perform the desired intervention. In the second case, the clinicians who expressed the most distress regarding the patient’s trajectory were the nurses, who largely lacked similar autonomy. Viewed together, these cases share a core question: What does paternalism look like in the contemporary era?