Location of death and hospice use in children with cancer varies by type of health insurance

• Published in: Pediatric blood & cancer 2022-08, Vol.69 (8), p.e29521-n/a
• Main Authors: Johnston, Emily E., Davis, Elizabeth S., Bhatia, Smita, Kenzik, Kelly
• Format: Article
• Language: English
• Subjects: Cancer; Children; Death; Death & dying; end‐of‐life care; Enrollments; Hematology; hospice; Intubation; location of death; Medicaid; medical intensity; Oncology; pediatric oncology; Pediatrics; Solid tumors
• ISSN: 1545-5009; 1545-5017
• DOI: 10.1002/pbc.29521

Background Disparities in end‐of‐life (EOL) care for children with cancer remain understudied. We addressed this gap by examining patterns of EOL care, with a focus on location of death and hospice utilization. Methods We used MarketScan – a nationally representative dataset with Medicaid and commercial claims to conduct a retrospective observational study of children with cancer who died between 2011 and 2017 at age ≤21 years. We examined rates of (a) home death, (b) hospice utilization, (c) and medically intense interventions in the last 30 days (e.g., intubation). Results Of the 1492 children in the cohort, 44% had Medicaid and 56% commercial insurance; 71% carried a solid tumor diagnosis, and 37% were between the ages of 15 and 21 years at the time of death. Forty percent died at home; children with Medicaid were less likely to die at home (relative risk [RR] = 0.82, 95% confidence interval [CI]: 0.73–0.92; reference: commercial). Forty‐five percent enrolled in hospice, for a median of 2 days. Hospice enrollment rates did not vary with insurance. However, children with Medicaid spent less time enrolled (incidence rate ratio [IRR] = 0.22, 95% CI: 0.17–0.27). Among children with Medicaid, Black children were less likely to die at home (RR = 0.69, 95% CI: 0.52–0.92) and enroll on hospice (RR = 0.71, 95% CI: 0.55–0.91) than non‐Hispanic White children. Medically intense interventions did not vary with insurance or race. Conclusion Only 40% of children with cancer die at home, and the duration of hospice enrollment is short. EOL care varies significantly with insurance. It is imperative that we determine if these patterns and disparities represent EOL preferences, provider biases, or differences in quality or availability of hospice.