Aggressiveness of Care at the End of Life of Children Dying with Cancer in Public Hospitals-A Nationwide Retrospective Cohort Study.

Abstract

Background: Little is known about the aggressiveness of cancer care at the end of life (ACCEoL) for children with cancer in countries where palliative care (PC) is scarce. Objective: The aim of this study was to determine the frequency and time trends of ACCEoL in the pediatric population in a Western European country. Setting/Subjects: We conducted a retrospective cohort study analyzing children between 0 and 17 years who died of cancer in public hospitals in Portugal, from January 2010 to December 2015. Measurements: Hospital admissions during the last month of life were identified and we analyzed the length of stay and procedures performed. The ACCEoL was measured with a composite indicator. Results: We identified 300 children, with a median age of 9 years. A total of 58.7% were male and 31.3% had central nervous system tumors. We found at least one indicator of ACCEoL in 87.8% of patients. "More than 14 days spent in the hospital" (51.0%) and "more than one hospitalization" (43.3%) were the most frequent individual indicators. Infants and children with hematological malignancies had a numerically higher percentage of ACCEoL. We found no statistically significant differences in the frequencies of the ACCEoL among the subgroups. The prevalence of ACCEoL remained stable over the period. Conclusions: In our cohort about 9 out of 10 children with cancer experienced at least one indicator of ACCEoL, a rate higher than in countries with well-developed PC services. There is a need to improve the care in the last months of life for children with cancer.