Quality of End-of-Life Care for Children Dying of Cancer: A Retrospective EHR Review

Key Message : Children with cancer face complex end-of-life care needs, making goal-concordant, high-quality care essential. In this study, we assessed adherence to validated quality measures and found that many standards were met, though gaps remained in preferred location of death documentation, ICU deaths, and family needs assessments, highlighting opportunities to improve care.

Abstract:

Background: Cancer is the leading cause of disease-related death in children in the US, making end-of-life (EOL) care a critical part of pediatric oncology (1). However, until recently, there were no quality measures (QM) for EOL care for children with cancer, making assessing quality of care difficult (2).

Purpose: To assess the quality of EOL care for children with cancer using recently developed QMs.

Methods: We conducted a retrospective analysis of children (≤18) who died of cancer between January 2023 and January 2025 at three sites. EHR abstractions included EOL quality measures data, sociodemographics, and clinical characteristics. Ten validated QMs were examined across three categories: location of death, medical intensity, and supportive services.

Results: Of 136 eligible children, the mean death age was 9.8 years (SD 5.6); 56% were male, 51% White, 18% Hispanic or Latino, and 15% Black. Diagnoses included CNS tumors (41%), hematological malignancies (32%), and non-CNS solid tumors (26%). Patients had high-quality care for a median 77.8% (IQR: 63-90) of applicable measures. Documentation of a preferred location of death was present for 61.8%; 69.9% of those died in their preferred location. For medically intensive EOL care, 97.7% avoided ≥ 3 emergency department visits in their last month, 75.6% avoided intubation in their last 14d, and 66.1% avoided death in the ICU. For supportive services, 76.5% had pediatric palliative care or hospice involvement in the last month; among those, 91.9% had palliative involvement >14d, and 89.5% had hospice involvement >5d. Within 60 days of death, financial assessments were completed for 67.2% of families, and sibling assessments were completed for 64% of families with multiple children.

Conclusions: Although many children met QM standards, opportunities for improvement exist in documentation of preferred death location, death in the ICU, and needs assessments. Next steps include examining disparities in quality of care.

References: 1. National Cancer Institute. Cancer in Children and Adolescents. National Cancer Institute. Published August 27, 2024. https://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet

2. Johnston EE, Martinez I, Wolfe J, Asch SM. Quality measures for end‐of‐life care for children with cancer: A modified Delphi approach. Cancer. 2021;127(14):2571-2578. doi:https://doi.org/10.1002/cncr.33546