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 making medical decisions at a young age, yet no standardized approaches have been developed for involving children in these decisions.Methods: This is a single-center survey study investigating the attitudes of pediatric pulmonologists 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 decisionmaking authority, reconciliation of parent-child discordance, and utility of ethics and psychiatry consultation services.Results: The majority of pediatric pulmonologists at this center believe decisionmaking authority rests with the parents. The effects of age and maturity are unclear.In instances of parent-child disagreement, physicians 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 with cystic fibrosis in SDM is broadly supported but inconsistently implemented. Despite evidence that children with chronic disease may have decisional capacity 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.

An Overview of Children’s Participation in Shared Decision-making in Healthcare Settings

“…Children's participation in shared decision-making was diverse and ranged from no involvement to being the main decision-maker (1,6,, as described in table 1. Children's participation was categorised into 'major' and 'minor' decisions.…”

“…The children reported that their perceptions of decision-making as they could either facilitate or obstruct a child's participation (8,12,19,34). Children's involvement in decision-making could be improved by knowing the related facilitators and barriers from the healthcare professionals' and parents' perspectives (1). Thus, understanding healthcare professionals' and parents' views on children's participation in shared decision-making is crucial.…”

“…The decision-making process in the healthcare setting is imperative as it constitutes a key component for improving the patient's health. Aligning with healthcare advancements, healthcare delivery has shifted from paternalistic decision-making (decision is solely based on the healthcare professional's choice) to shared decision-making (patient and healthcare professional decide together) (1,2). Shared decision-making can also be described as a joint and interactive process where healthcare professionals and patients participate in all phases of the decision-making process.…”

“…Nonetheless, shared decision-making in the paediatric setting differs from that in the adult setting. In healthcare situations involving children, shared decision-making was performed based on multiple steps and included triadic communication, which comprises at least three parties: the healthcare professionals, patients, and their caretakers or guardians (1,6,7). All involved will share information with each other and then expressed their treatment preferences.…”