End-of-life care quality for children with cancer who receive palliative care

Background: We previously developed stakeholder-informed quality measures to assess end-of-life care quality for children with cancer. We sought to implement a subset of these quality measures in the multi-center pediatric palliative care (PPC) database. Procedures: We utilized the Shared Data and Research database to evaluate the proportion of childhood cancer decedents from 2017-2021 who, in the last 30 days of life, avoided chemotherapy, mechanical ventilation, intensive care unit admissions, and > 1 hospital admission; were enrolled in hospice services, and reported <= 2 highly distressing symptoms. We then explored patient factors associated with the attainment of quality benchmarks. Results: Across 79 decedents, 82% met >= 4 quality benchmarks. Most (76%) reported > 2 highly distressing symptoms; 17% were enrolled in hospice. In univariable analyses, patients with an annual household income <=$50,000 had lower odds of hospice enrollment and avoidance of mechanical ventilation or intensive care unit admissions near end of life (odds ratio [OR] 0.10 [95% confidence interval (C.I.) 0.01, 0.86], p = 0.04; OR 0.13 [0.02, 0.64], p = 0.01; OR 0.36 [0.13, 0.98], p = 0.04, respectively). In multivariable analyses, patients with an income <=$50,000 remained less likely to enroll in hospice, after adjusting for cancer type (OR 0.10 [0.01, 0.87]; p = 0.04). Conclusions: Childhood cancer decedents who received PPC met a large proportion of quality measures near the end of their life. Yet, many reported highly distressing symptoms. Moreover, patients with lower household incomes appeared less likely to enroll in hospice and more likely to receive intensive hospital services near the end of life. This study identifies opportunities for palliative oncology quality improvement.

Automated summary

This study examines the application of quality measures for end-of-life care in children with cancer. The findings show that while most patients met the quality benchmarks, many still experienced highly distressing symptoms. Additionally, patients with lower household incomes were less likely to enroll in hospice and more likely to receive intensive hospital services near the end of life.