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Attitudes towards involving children in decision-making surrounding lung transplantation
Emily E Barsky1, Laura M Berbert2, Suzanne E Dahlberg3
1Division of Pulmonary Medicine, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, USA.
Insights
Pediatric pulmonologists support shared decision-making (SDM) for children but often defer final authority to parents, even when children show capacity. Age and maturity have minimal impact on physician decisions regarding pediatric medical choices.
Area of Science:
- Pediatric healthcare
- Medical ethics
- Shared decision-making
Background:
- Medical care is transitioning from paternalistic models to patient-centered autonomy and shared decision-making (SDM).
- The specific role of pediatric patients in medical decision-making remains unclear.
- While children with chronic diseases may possess decision-making capacity early, standardized methods for their involvement are lacking.
Purpose of the Study:
- To investigate pediatric pulmonologists' attitudes towards involving children in lung transplantation decisions.
- To assess physician beliefs on decision-making authority, parent-child discordance, and consultation utility.
Main Methods:
- A single-center survey study was conducted.
- A hypothetical case scenario with manipulated child age and maturity was used.
- Physician attitudes regarding decision-making authority, discordance resolution, and consultation services were evaluated.
Main Results:
- Most pediatric pulmonologists believe parents hold ultimate decision-making authority.
- Physician inclination to favor a child's preference in disagreements increases with the child's age and maturity.
- Opinions are divided on the usefulness of ethics and psychiatry consultations.
Conclusions:
- Shared decision-making (SDM) for pediatric patients, including those with cystic fibrosis, is supported but not consistently practiced.
- Despite evidence of decisional capacity in young children with chronic conditions, most physicians grant authority to parents.
- Barriers such as legal issues exist, and the influence of age and maturity requires further study.
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 decision-making authority, reconciliation of parent-child discordance, and utility of ethics and psychiatry consultation services.
Results:
The majority of pediatric pulmonologists at this center believe decision-making 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.
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