Not there yet: Pediatric palliative care in Canada 2002-2012

Abstract

Objectives: As a follow-up to a study conducted in 2002, our objective was to obtain an accurate description of programs that provided specialized pediatric palliative care (PPC) in 2012 and the children who received it; explore changes in the programs and care provided since 2002; and determine the current proportion of children who receive care through the programs. Methods: Collaborators from 13 PPC programs provided information about program structure and staffing, and the demographics, processes, and outcomes of care for the children who received care during 2012. Data were compared with results of a similar study from 2002. Results: Between 2002 and 2012 the number of PPC programs in Canada increased from 8 to 13 and the number of children who received care through these programs more than quadrupled from 317 to 1401. However, the number of core staff across all programs increased by only two and a half times from 13.6 Full Time Equivalents in 2002 to 33.8 in 2012. Over the 10 year period, higher proportions of children who received care in 2012 were less than 1 year of age, (36.3% vs. 24.0%, p LT 0.01), had congenital conditions or conditions originating in the perinatal period (36.0% vs. 22.1%, p LT 0.01), and died in a neonatal or pediatric intensive care setting (24.4% vs. 12.3%, p LT 0.01). The proportion of children who might benefit that actually received specialized PPC increased from 5.0 percent in 2002 to 18.6 percent in 2012. Conclusions: Program growth and changes in child demographics indicate improved reach of the programs over time. However, remaining barriers prevent the majority of children from receiving specialized PPC services in a timely manner. Exploration of changes over time provides information to clinicians, and policy and decision makers to guide further program development in Canada and internationally.