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

• Published in: Pediatrics (Evanston) 2008-09, Vol.122 (3), p.574-582
• Main Authors: Linton, Julie M, Feudtner, Chris
• Format: Article
• Language: English
• Subjects: Biological and medical sciences; Care and treatment; Child; Children; Company business management; Diseases; Ethics; Families & family life; General aspects; Health care access; Humans; Management; Medical sciences; Outcome and Process Assessment (Health Care) - methods; Palliative care; Palliative Care - methods; Palliative Care - standards; Palliative treatment; Pediatric diseases; Pediatrics; Public health. Hygiene; Public health. Hygiene-occupational medicine; Quality of Health Care; Social classes; Socioeconomic Factors; Teaching. Deontology. Ethics. Legislation; Terminal care; Terminal Care - methods; Terminal Care - standards; United States
• ISSN: 0031-4005; 1098-4275
• DOI: 10.1542/peds.2007-3042

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