Predictors of and trends in high-intensity end-of-life care among children with cancer: a population-based study using health services data

Purpose — Children with cancer often receive high-intensity (HI) medical care at the end-of-life (EOL). Previous studies have been limited to single centers or lacked detailed clinical data. We determined predictors of and trends in HI-EOL care by linking population-based clinical and health services databases.

Methods — retrospective decedent cohort of childhood cancer patients who died 2000-2012 in Ontario, Canada was assembled using a provincial cancer registry and linked to population-based healthcare data. Based on previous studies, the primary composite measure of HI-EOL care comprised any of: IV chemotherapy <14 days from death; >1 ED visit, >1 hospitalization, or intensive care unit (ICU) admission <30 days from death. Secondary measures included the individual measures above and measures of the most invasive (MI) EOL care [e.g. mechanical ventilation (MV) <14 days from death]. We determined predictors of outcomes with appropriate regression models. Sensitivity analysis was restricted to cases of cancer related mortality, excluding treatment related mortality (TRM) cases.

Results — 815 patients were included. 331 (40.6%) experienced HI-EOL care; those with hematologic malignancies were at highest risk [odds ratio (OR) 2.5, 95th confidence interval 1.8-3.6; p<0.001)]. Patients with hematologic cancers, and those who died after 2004 were more likely to experience the MI-EOL care (e.g. ICU, MV; ORs from 2.0-5.1). Excluding cases of TRM did not substantively change the results.

Conclusions — Ontario children with cancer continue to experience HI-EOL care. Patients with hematologic malignancies are at highest risk even when excluding TRM. Worryingly, rates of the MI-EOL care have increased over time despite increased palliative care access. Linking health services and clinical data allows monitoring of 3 population trends in EOL care and identifies high-risk populations for future interventions.