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Discover Pediatric Collections on COVID-19 and Racism and Its Effects on Pediatric Health

American Academy of Pediatrics
Review Article

Pediatric Advance Care Planning: A Systematic Review

Julia D. Lotz, Ralf J. Jox, Gian Domenico Borasio and Monika Führer
Pediatrics March 2013, 131 (3) e873-e880; DOI: https://doi.org/10.1542/peds.2012-2394
Julia D. Lotz
aCoordination Center for Pediatric Palliative Care, University Children’s Hospital, and
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Ralf J. Jox
bInstitute of Ethics, History and Theory of Medicine, Ludwig-Maximilians University Munich, Munich, Germany; and
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Gian Domenico Borasio
aCoordination Center for Pediatric Palliative Care, University Children’s Hospital, and
cCentre Hospitalier Universitaire Vaudois, Service des Soins Palliatifs, Lausanne, Switzerland
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Monika Führer
aCoordination Center for Pediatric Palliative Care, University Children’s Hospital, and
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Abstract

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.

KEY WORDS
  • advance care planning
  • palliative care
  • end of life
  • pediatric
  • pediatric advance life support [PALS]
  • Abbreviations:
    AD —
    advance directive
    ACP —
    advance care planning
    DNR —
    do not resuscitate
    EOL —
    end of life
    pACP —
    pediatric advance care planning
    RC —
    Respecting Choices
    RCT —
    randomized controlled trial
    • Accepted October 24, 2012.
    • Copyright © 2013 by the American Academy of Pediatrics

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    Pediatrics
    Vol. 131, Issue 3
    1 Mar 2013
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    Pediatric Advance Care Planning: A Systematic Review
    Julia D. Lotz, Ralf J. Jox, Gian Domenico Borasio, Monika Führer
    Pediatrics Mar 2013, 131 (3) e873-e880; DOI: 10.1542/peds.2012-2394

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    Pediatric Advance Care Planning: A Systematic Review
    Julia D. Lotz, Ralf J. Jox, Gian Domenico Borasio, Monika Führer
    Pediatrics Mar 2013, 131 (3) e873-e880; DOI: 10.1542/peds.2012-2394
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    Subjects

    • Administration/Practice Management
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    Keywords

    • advance care planning
    • palliative care
    • end of life
    • pediatric
    • pediatric advance life support [PALS]
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