Abstract

For many children with complex medical conditions, decisions regarding their goals of care lie in the zone of parental discretion. That is, clinicians appropriately recognize that in many cases whether to prioritize quantity of life or quality of life is a deeply personal, values-laden decision best made by those who are most deeply invested in the outcome. Once a family has committed to a goal, however, there may be new or ongoing conflict between parents and clinicians regarding the specific interventions provided or not provided in support of that goal. To what extent is it ethically permissible for a seriously ill child’s surrogate decision makers to reject individual interventions that support their desired goal of care? This question might be best described thus: is pediatric healthcare “prix fixe,” in which clinicians help parents decide the best of one or more set combinations (“menus”) of interventions, or is it “à la carte,” in which parents are free to accept or reject each individual intervention? We argue that the concept of a “prix fixe” approach should be discussed with families early in the development of the clinical relationship, as an essential facet of shared decision making.