Epidemiology and Trends in Palliative Care Encounters of Hospitalized Children in the United States

Introduction: Pediatric palliative care (PC) is an essential and multi-faceted service for children with serious and/or life-limiting illnesses. The use and scope of PC has been increasing, which can be further optimized. This study aimed to describe demographics and trends in the utilization of PC in hospitalized children in the US.


Methods: A retrospective, serial, cross-sectional analysis of the Kids’ Inpatient Database for the years 2016, 2019, and 2022 was done, excluding full-term normal neonates. PC encounters were identified using the ICD-10 code Z51.5. Variables were compared between those who had a PC encounter and all other admissions via chi-square test or Mann-Whitney U test. The Mantel-Haenszel test was used for linear trend analysis (presented per 10,000 discharges). Binary regression analysis was used to estimate the adjusted odds of variables associated with a PC encounter.


Results: Of 11,484,819 discharges, 43,284 patients had a PC encounter (37.7/10,000). The prevalence increased from 30.7 in 2016 to 48.2 in 2022 (p < 0.001). Children with PC encounters were older (3.0 yrs vs 0.0 yrs, p< 0.001), had longer length of stay (8.0 days vs 2.0 days, p< 0.001), and higher total costs ($36,594 vs $4536, p< 0.001). On regression analysis, infants (OR 1.1, CI 1.0-1.1), ages 19-20 years (OR 1.4, CI 1.3-1.5), hospitals in Midwest (OR 1.8, CI 1.7-1.8), children’s hospitals (OR 1.4, CI 1.4-1.5), and presence of any complex chronic condition (CCC) (OR 39.5, CI 38.1-40.8) were more associated with having a PC encounter. Variables associated with lower odds of PC encounters included ages 12-18 yrs (OR 0.9, CI 0.9-0.9), Black children (OR 0.9, 0.9-0.9), and elective admissions (OR 0.5, CI 0.5-0.6). The incidence of CPR (8.4% vs 0.3%; OR: 31.6 (30.5-32.8)), DNR (29.4% vs 0.1%; OR: 369.6 (359.8-379.7)), braindeath (1.9% vs 0.04%; OR: 44.8 (41.5-24.2)), and mortality (34.9% vs 0.4%; OR:124.7 (122.1-127.5)) was higher in children with a PC encounter.


Conclusions: The prevalence of PC encounters is increasing in hospitalized children, and the presence of a CCC is strongly associated with PC encounters. A 3rd of children with a PC encounter died during hospitalization. The impact of PC consultation on outcomes and family support in children with a CCC warrants further study.