Palliative Care Programs in Children’s Hospitals

Abstract

BACKGROUNG AND OBJECTIVES This study determined the prevalence of PPC programs in the United States and compared the environment of children’s hospitals with and without PPC programs. METHODS Analyses of the multicenter Children’s Hospital Association Annual Benchmark Report 2020 survey for prevalence of PPC programs and association with operational, missional, educational, and financial domains. RESULTS Two hundred thirty-one hospitals received Annual Benchmark Report survey requests with 148 submitted (64% response rate) inclusive of 50 states. One hundred nineteen (80%) reported having a PPC program and 29 (20%) reported not having a PPC program. Free-standing children’s hospitals (n = 42 of 148, 28%) were more likely to report the presence of PPC (P = .004). For settings with PPC programs, the median number of staffed beds was 185 (25th quartile 119, 75th quartile 303) compared with 49 median number of staffed beds for those without PPC (25th quartile 30, 75th quartile 81). Facilities with higher ratio of trauma, intensive care, or acuity level were more likely to offer PPC. Although palliative care was associated with hospice (P <.001) and respite (P = .0098), over half of facilities reported not having access to hospice for children (n = 82 of 148, 55%) and 79% reported not having access to respite care (n = 117 of 148). CONCLUSIONS PPC, hospice, and respite services remain unrealized for many children and families in the United States. Programmatic focus and advocacy efforts must emphasize creation and sustainability of quality PPC programs in smaller, lower resourced hospitals.