A Summary of Pediatric Palliative Care Team Structure and Services as Reported by Centers Caring for Children with Cancer

Meaghann S Weaver, Abby R. Rosenberg, Julia Tager, Christopher S Wichman, Lori Wiener

Research output: Contribution to journalArticle

10 Scopus citations

Abstract

Background: Little is known about the composition, availability, integration, communication, perceived barriers, and work load of pediatric palliative care (PPC) providers serving children and adolescents with cancer. Objective: To summarize the structure and services of programs to better understand successes and gaps in implementing palliative care as a standard of care. Methods: Cross-sectional online survey about the palliative care domains determined by the Psychosocial Care of Children with Cancer and Their Families Workgroup. Subjects: A total of 142 surveys were completed with representation from 18 countries and 39 states. Results: Three-fourths of sites reported having a PPC program available for the pediatric cancer population at their center. Over one-fourth (28%) have been in existence less than five years. Fewer than half of sites (44%) offered 24/7 access to palliative care consultations. Neither hospital-based nor local community hospice services were available for pediatric patients at 24% of responding sites. A specific inpatient PPC unit was available at 8% of sites. Criteria for automatic palliative referrals ("trigger" diagnoses) were reported by 44% respondents. The presence of such "triggers" increased the likelihood of palliative principle introduction 3.41 times (p < 0.003). Six percent of respondents perceived pediatric oncology patients and their families "always" were introduced to palliative care concepts and 17% reported children and families "always" received communication about palliative principles. The most prevalent barriers to palliative care were at the provider level. Discussion: Children and adolescents with cancer do not yet receive concurrent palliative care as a universal standard.

Original languageEnglish (US)
Pages (from-to)452-462
Number of pages11
JournalJournal of Palliative Medicine
Volume21
Issue number4
DOIs
StatePublished - Apr 2018

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Keywords

  • Pediatric cancer
  • Pediatric oncology
  • Pediatric palliative care

ASJC Scopus subject areas

  • Nursing(all)
  • Anesthesiology and Pain Medicine

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