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Pediatric advance care planning: a systematic review
Julia D Lotz1, Ralf J Jox, Gian Domenico Borasio
1Coordination Center for Pediatric Palliative Care (KKIP), University Children's Hospital, Munich, Germany. julia.lotz@med.uni-muenchen.de
Insights
Pediatric advance care planning (pACP) is emerging, with few programs identified globally. Preliminary data suggest pACP is beneficial for families, though community and professional perspectives require further investigation.
Area of Science:
- Pediatric Palliative Care
- Bioethics
- Health Services Research
Background:
- Advance care planning (ACP) is a benchmark in managing life-limiting illnesses.
- While extensively studied in adults, ACP is increasingly applied to pediatric populations (pACP).
- This review systematically examines empirical literature on pediatric advance care planning.
Purpose of the Study:
- To assess current practices in pediatric advance care planning (pACP).
- To evaluate the effects and outcomes of pACP.
- To understand the perspectives of stakeholders involved in pACP.
Main Methods:
- Systematic review of empirical literature on pACP.
- Searched PubMed, BELIT, and PSYCinfo (January 1991–January 2012).
- Screened titles, abstracts, and full texts; assessed evidence levels and retrieved outcomes.
Main Results:
- Included 5 qualitative and 8 quantitative studies; identified 3 pACP programs, all in the US.
- Key pACP elements include family-provider discussions and advance directives.
- Preliminary findings indicate pACP is implementable, perceived as helpful, emotionally relieving, and aids communication, despite community challenges.
Conclusions:
- Few systematic pACP programs exist globally, with none in Europe.
- Further research is needed to address stakeholder needs, particularly from professionals.
- The limited global presence highlights a gap in pediatric palliative care planning.
Background And Objectives:
Advance care planning (ACP) is increasingly regarded as the gold standard in the care of patients with life-limiting illnesses. Research has focused on adults, but ACP is also being practiced in pediatrics. We conducted a systematic review on empirical literature on pediatric ACP (pACP) to assess current practices, effects, and perspectives of pACP.
Methods:
We searched PubMed, BELIT, and PSYCinfo for empirical literature on pACP, published January 1991 through January 2012. Titles, abstracts, and full texts were screened by 3 independent reviewers for studies that met the predefined criteria. The evidence level of the studies was assessed. Relevant study outcomes were retrieved according to predefined questions.
Results:
We included 5 qualitative and 8 quantitative studies. Only 3 pACP programs were identified, all from the United States. Two of them were informed by adult programs. Major pACP features are discussions between families and care providers, as well as advance directives. A chaplain and other providers may be involved if required. Programs vary in how well they are evaluated; only 1 was studied by using a randomized controlled trial. Preliminary data suggest that pACP can successfully be implemented and is perceived as helpful. It may be emotionally relieving and facilitate communication and decision-making. Major challenges are negative reactions from emergency services, schools, and the community.
Conclusions:
There are few systematic pACP programs worldwide and none in Europe. Future research should investigate the needs of all stakeholders. In particular, the perspective of professionals has so far been neglected.
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