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Are We on the Same Page? Exploring Pediatric Patients' Involvement With Advance Care Planning
Eline Randi Hildursdotter Vatne Aasen1, Marte Løvaas Søvik1, Ketil Størdal2
1Faculty of Medicine (E.R.H.V.A., M.L.S.), University of Oslo, Oslo, Norway.
Insights
Children and young adults are often excluded from advance care planning (ACP) in pediatric palliative care (PPC). Studies show caregivers are more involved than patients, and preferences may differ, though ACP can be helpful for AYAs.
Area of Science:
- Pediatric Palliative Care
- Bioethics
- Child Advocacy
Background:
- Children have a right to be heard, including in pediatric palliative care (PPC).
- Advance care planning (ACP) is crucial for patients in PPC.
- This review explores the involvement of children, adolescents, and young adults (AYAs) in ACP within PPC.
Purpose of the Study:
- To review existing literature on the involvement of children and AYAs in advance care planning (ACP) in pediatric palliative care (PPC).
- To identify gaps in research regarding patient involvement in ACP within PPC.
Main Methods:
- A literature search was conducted in PubMed from January 1, 2002, to December 31, 2021.
- Included publications focused on ACP or related terms in any PPC context.
- 21 unique reports were finalized from 471 identified citations.
Main Results:
- Caregivers are more frequently included in ACP than children and AYAs.
- Some studies reveal incongruence between AYAs and caregivers regarding ACP and treatment preferences.
- Despite evoking emotions, ACP is perceived as beneficial by many AYAs.
Conclusions:
- Most studies on ACP in PPC do not involve children and AYAs.
- Further research is needed to explore how ACP can reduce incongruence in treatment preferences.
- Investigating the impact of pediatric ACP on patient outcomes in PPC is recommended.
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.
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