Pediatric advance care planning from the perspective of health care professionals: A qualitative interview study

Abstract

Background: Pediatric advance care planning differs from the adult setting in several aspects, including patients’ diagnoses, minor age, and questionable capacity to consent. So far, research has largely neglected the professionals’ perspective. Aim: We aimed to investigate the attitudes and needs of health care professionals with regard to pediatric advance care planning. Design: This is a qualitative interview study with experts in pediatric end-of-life care. A qualitative content analysis was performed. Setting/participants: We conducted 17 semi-structured interviews with health care professionals caring for severely ill children/adolescents, from different professions, care settings, and institutions. Results: Perceived problems with pediatric advance care planning relate to professionals’ discomfort and uncertainty regarding end-of-life decisions and advance directives. Conflicts may arise between physicians and non-medical care providers because both avoid taking responsibility for treatment limitations according to a minor’s advance directive. Nevertheless, pediatric advance care planning is perceived as helpful by providing an action plan for everyone and ensuring that patient/parent wishes are respected. Important requirements for pediatric advance care planning were identified as follows: repeated discussions and shared decision-making with the family, a qualified facilitator who ensures continuity throughout the whole process, multi-professional conferences, as well as professional education on advance care planning. Conclusion: Despite a perceived need for pediatric advance care planning, several barriers to its implementation were identified. The results remain to be verified in a larger cohort of health care professionals. Future research should focus on developing and testing strategies for overcoming the existing barriers.