Generally, wide latitude is granted to parents when making decisions for their child on the basis of the wide acceptance of the special relationship between parent and child and the important role played by parents in the lives of children. However, when high-risk decisions are made, health care teams serve as an important societal safeguard that questions whether a parent is an appropriate decision-maker for their child. Child advocacy is an essential function of the pediatric health care team. In this ethics rounds, we examine a case of an infant with a complex medical condition requiring prolonged hospitalization that results in a clash of understanding between a mother and medical team when the mother abruptly requests removal of life-sustaining treatment. We present an ethical decision-making framework for such cases and examine the impact of barriers and unconscious bias that can exclude parents from their rightful role in directing care for their child.
Copyright © 2018 by the American Academy of Pediatrics.