Barriers to hospice for children as perceived by hospice organizations in North Carolina

Am J Hosp Palliat Care. 2012 May;29(3):171-6. doi: 10.1177/1049909111412580. Epub 2011 Jun 28.

Abstract

Despite improving organization of hospice for children with life-limiting illnesses, services may be underutilized. We asked representatives of all 76 existing North Carolina hospice organizations about barriers to serving children. Representatives of 61 agencies responded (80%). Hospices serving children differed from hospices not serving children on perception of barriers: 1) Lack of pediatric trained staff (8% vs 42%, p = 0.01); 2) lack of pediatrician consultation (23% vs 50%, p = 0.03); 3) lack of pediatric pharmacy (4% vs 32%, p = 0.006), and inconsistent plan of care between pediatrician and hospice (12% vs 47%, p = 0.01). Lack of pediatric referrals (78%) and families wanting to continue curative therapies while receiving hospice care (77%) were felt to be the most important barriers overall. Enhanced training of pediatric providers and a model of care which blends disease-specific treatment with hospice may improve access to hospice services for children.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Attitude of Health Personnel*
  • Child
  • Child Health Services / organization & administration*
  • Child, Preschool
  • Data Collection
  • Family / psychology*
  • Hospice Care / statistics & numerical data*
  • Hospices
  • Humans
  • North Carolina
  • Pediatrics*
  • Practice Patterns, Physicians'*
  • Referral and Consultation / statistics & numerical data*
  • Workforce