Published online September 1, 2008
PEDIATRICS Vol. 122 No. 3 September 2008, pp. 574-582 (doi:10.1542/peds.2007-3042)
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ARTICLE

What Accounts for Differences or Disparities in Pediatric Palliative and End-of-Life Care? A Systematic Review Focusing on Possible Multilevel Mechanisms

Julie M. Linton, MDa and Chris Feudtner, MD, PhD, MPHb,c,d,e

a Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
b Division of General Pediatrics, School of Medicine
c Center of Clinical Epidemiology and Biostatistics
d Center for Bioethics
e The Leonard Davis Institute, University of Pennsylvania, Philadelphia, Pennsylvania

OBJECTIVE. The goal was to clarify potential mechanisms underlying differences/disparities in pediatric palliative and end-of-life care.

METHODS. We systematically searched online databases to identify articles relating to differences/disparities in pediatric palliative and end-of-life care, retaining 19 studies for evaluation. We then augmented this search with a broader review of the literature on the mechanisms of differences/disparities in adult palliative and end-of-life care, general pediatrics, adult medicine, and pain.

RESULTS. The concept of reciprocal interaction can organize and illuminate interacting mechanisms across 3 levels of human organization, namely, broader contextual influences on patients and clinicians, specific patient-provider engagements, and specific patients. By using this rubric, we identified 10 distinct mechanisms proposed in the literature. Broader contextual influences include health care system structures; access to care; and poverty, socioeconomic status, social class, and family structure. Patient-clinician engagements encompass clinician bias, prejudice, and stereotypes; concordance of race; quality of information exchange; and trust. Patient-specific features include perceptions of control; religion and spirituality; and medical conditions.

CONCLUSIONS. Differences and disparities in pediatric palliative and end-of-life care can be understood as arising from various mechanisms that interact across different levels of human organization, and this interactive multilevel model should be considered in designing studies or planning interventions to understand differences and to ameliorate disparities.

Key Words: palliative care • terminal care • cultural diversity • minority groups • social class • socioeconomic factors • health services accessibility • child • multilevel model • hierarchical model

Abbreviations: PEOL—palliative and end-of-life • SES—socioeconomic status • SCHIP—State Children's Health Insurance Program

Accepted Dec 20, 2007.


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