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.