Parental role in decision making about pediatric cardiac transplantation: familial and ethical considerations.

Parents of children with complex or terminal heart conditions often face agonizing decisions about cardiac transplantation. There are differences in the level of involvement that parents prefer when making such decisions. The purpose of this study was to identify and describe parents' preferences for their roles in decisions related to cardiac transplantation. A prospective ethnographic method was used to study 24 parents of 15 children prior to their decision of accepting or rejecting the transplant option for their children. Findings revealed that the style of parent decision making ranged from a desire to make an independent, autonomous choice to a wish for an authoritarian, paternalistic choice. Nurses and physicians can best support families in this situation, showing sensitivity to the steps that parents use to make their decisions. An ethical model of decision making is proposed that includes respect for differences in beliefs and values of all persons involved in the transplantation discussion.