Attitudes Towards Involving Children in Decision-Making Surrounding Lung Transplantation

Abstract

Background: Medical care has shifted from a paternalistic model towards one centered around patient autonomy and shared decision-making (SDM), yet the role of the pediatric patient in decision-making is unclear. Studies suggest that many children with chronic disease are capable of participating in and even making medical decisions at a young age, and yet we do not standardly involve them. Methods: This is a single center survey study investigating physician attitudes towards involvement of children in decisions regarding lung transplantation, utilizing a hypothetical case scenario with systematic manipulation of age and maturity level. We evaluated physician belief regarding ultimate decision-making authority, attempts at reconciliation of parent-child discordance, and views towards utilizing ethics and psychiatry consultation services. Results: The majority of pediatric pulmonologists believe decision-making authority rests with the parents. The effects of age and maturity are unclear. In instances of parent-child disagreement, physician are more likely to try to convince parents to defer to the child if the child is both older and more mature. Physicians are divided on the utility of ethics and psychiatry consultations. Conclusion: Involvement of children in shared decision-making is broadly supported but poorly implemented. Despite evidence that children with chronic disease may have decisional capacity starting at a young age, the majority of physicians still grant decisional authority to parents. There are numerous barriers to involving children in decisions, including legal considerations. The role of age and maturity level in influencing these decisions appears small and warrants further investigation.