October 13, 2016
Toronto, ON – The University of Toronto’s Faculty of Nursing today announced that only 18 per cent of children with life-threatening conditions access specialized pediatric palliative care in Canada, a 13 per cent increase since 2002. 25 per cent of those who receive this type of care only do so for less than eight days prior to death. The new study led by Dr. Kimberley Widger, assistant professor at the Lawrence S. Bloomberg Faculty of Nursing, is now published online by CMAJ Open (Canadian Medical Association Journal).
“We completed a similar study 10 years ago and wanted to see how the landscape of pediatric palliative care provision changed over time,” says Widger. “With the advent of Medical Assistance in Dying, and the possibility of extending this option to children, we felt it was important to update our information about the proportion of children receiving specialized care.”
Pediatric palliative care is an active and total approach to care for children with life-threatening conditions and their families aimed at managing symptoms and optimizing quality of life throughout the disease process. While every health professional should be able to incorporate aspects of palliative care into usual care provision, the study finds that there is growing evidence to suggest that specialized services may provide improved quality of care. Researchers examined the programs available in Canada and the children who received this specialized care, as well as estimating the proportion of children who might benefit and actually receive specialized care.
Specialized pediatric palliative care programs were included in the study based on provision of care by health professionals with expertise in both pediatrics and palliative care with designated resources to deliver specialized care to children with any type of life-threatening condition. An investigator from each program provided information about the services provided during 2012 and all children who received care through the program during that calendar year. Two methods were used to estimate the proportion of children who received care based on data available through Statistics Canada on the population of children less than 19 years of age and the total number and causes of death for children during 2012. Both methods resulted in the same proportion estimates.
While there has been program growth and improved reach of services over time, barriers remain that prevent the vast majority of children with life-threatening conditions from receiving specialized pediatric palliative care services.
The full study titled “Pediatric palliative care in Canada in 2012: A cross-sectional descriptive study” is available online at CMAJ Open (http://cmajopen.ca/content/4/4/E562.full).
For more information or to arrange an interview, please contact:
Dr. Kimberley Widger