Are We on the Same Page? Exploring Pediatric Patients' Involvement With Advance Care Planning

Abstract

Background: According to the UN Convention on the Rights of the Child, children have a right to be heard. This also applies to patients in pediatric palliative care (PPC). The aim of this literature review was to explore what is known about the involvement of children (<14 years of age), adolescents and young adults (AYAs) in advance care planning (ACP) in PPC.

Methods: A search was conducted in PubMed including publications from January 1, 2002 until December 31, 2021. The identified citations had to report on ACP or related terms in any PPC context.

Results: A total of n = 471 unique reports were identified. Final inclusion criteria were met by n = 21 reports, including children and AYAs with diagnoses related to oncology, neurology, HIV/AIDS and cystic fibrosis. Nine reports were from randomized controlled studies, investigating ACP methodology. The main findings were: 1) caregivers are included more often than children and adolescents in ACP, 2) some studies indicate an incongruence between AYAs and their caregivers regarding ACP and treatment preferences, 3) although the process evokes a wide range of emotions, ACP is perceived as helpful by many AYAs CONCLUSION: The majority of studies about ACP in PPC do not include children and AYAs. Whether incongruence reported in some studies between AYAs and their caregivers regarding treatment preferences could be reduced by ACP should be further explored, including the involvement of children and adolescents in ACP, and the impact of pediatric ACP on patient outcomes in PPC.

Keywords: Palliative care; advance care planning; communication; end-of-life care; pediatric.