Predictors of and Trends in High-Intensity End-of-Life Care Among Children With Cancer: A Population-Based Study Using Health Services Data

Abstract

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 A retrospective decedent cohort of patients with childhood cancer who died between 2000 and 2012 in Ontario, Canada, was assembled using a provincial cancer registry and linked to population-based health-care data. Based on previous studies, the primary composite measure of HI-EOL care comprised any of the following: intravenous chemotherapy < 14 days from death; more than one emergency department visit; and more than one hospitalization or intensive care unit admission < 30 days from death. Secondary measures included those same individual measures and measures of the most invasive (MI) EOL care (eg, mechanical ventilation < 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 The study included 815 patients; of these, 331 (40.6%) experienced HI-EOL care. Those with hematologic malignancies were at highest risk (odds ratio, 2.5; 95% CI, 1.8 to 3.6; P < .001). Patients with hematologic cancers and those who died after 2004 were more likely to experience the MI-EOL care (eg, intensive care unit, mechanical ventilation, odds ratios from 2.0 to 5.1). Excluding cases of TRM did not substantively change the results. Conclusion Ontario children with cancer continue to experience HI-EOL care. Patients with hematologic malignancies are at highest risk even when excluding TRM. Of concern, rates of the MI-EOL care have increased over time despite increased palliative care access. Linking health services and clinical data allows monitoring of population trends in EOL care and identifies high-risk populations for future interventions.

High‐intensity end‐of‐life care among children, adolescents, and young adults with cancer who die in the hospital: A population‐based study from the French national hospital database

“…We found no statistical evidence of a decrease in HI‐EOL or MI‐EOL care over time. This finding is in line with other countries in which no change or even an increase has been reported. Several explanations may account for the absence of a decrease, despite recent palliative policies for children in France.…”

“…The exclusion of deaths that occur at home can overestimate HI‐ and MI‐EOL in our study. HI‐EOL would potentially be closer (approximately 51%) to the Canadian findings of Kassam et al if we hypothesize that the 20% of children, adolescents, and young adults who died of cancer at home in France (according to the French national death registry, Cépi‐DC) did not experience HI‐EOL. It is likely, however, that the true HI‐EOL value lies between these 2 bounds (51%‐61%).…”

“…Our study cannot differentiate situations with “relevant” and “nonrelevant” HI‐EOL care. However, excluding cases of treatment‐related mortality did not substantively change the results of the study performed by Kassam et al Whether the situations of HI‐EOL care reflect treatment‐related mortality, preference of individuals or insufficient planning of palliative warrants further study. In particular, our findings should be completed with more qualitative analyses to better capture patient and family preferences and views, symptom burden and patient‐reported outcomes.…”

Palliative care initiation in pediatric oncology patients: A systematic review

“…With the improvements in medical therapy for pediatric oncology patients, children now survive for longer periods and require extended PC, making pediatric PC an increasingly important area of research . Recent studies have investigated related ethical issues: how and when children should be involved in decision‐making and what disparities exist in PC access . Moreover, various studies have demonstrated PC for children with cancer is initiated late in the illness trajectory, indicating a discrepancy between the normative recommendation for early integration and referral practices in pediatric oncology.…”

Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions

“…In a large retrospective study 53 of 815 children with cancer, those who died after 2004 were more likely to have been in an intensive care unit, mechanically ventilated, or to have died in the hospital than those who died between 2000 and 2004. Taken together, these experiences underscore the need to understand, standardise, and integrate evolving PPC roles and services in paediatric oncology care.…”