Background Advance Care Planning (ACP) enables individuals together with their relatives and health care professionals to discover, discuss and document their values, preferences and goals for care.
Objective To evaluate the involvement of pediatricians taking care of children with life-limiting conditions in ACP.
Methods All pediatricians from six Dutch pediatric hospitals completed a survey about experiences with ACP in their most recent case of a deceased child.
Results Of the 207 participating pediatricians (response 36%), 168 completed the questionnaire (81%), of which 86% described a case. Of these children, 53% died before the age of 5 years. ACP conversations always took place with parents, mostly about diagnosis, life expectancy, goals of care, fears and worries and code status. In 23%, ACP conversations occurred with children (age: range 2.2–17.3 years, median 11.5 years), discussing mostly joy of life, hope, diagnosis and fears and worries. 94% of pediatricians were satisfied with their conversations skills. The occurrence rate of ACP conversations was indicated as insufficient by 49%. Pediatricians stated in 60% that ACP conversations have to result in a documented code status. 37% said ACP conversations intend mainly to provide information to families. Reported barriers to ACP conversations were mostly parent-related, while facilitators concerned continuity of care and a multidisciplinary approach.
Conclusion Pediatricians reported to have ACP conversations mainly with parents with a focus on medical issues. Insight in the perspective of the child is limited. Education on the holistic approach of ACP and on involvement of children in ACP is needed.
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