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
Only 18% of children with life-threatening conditions access
specialized pediatric palliative care in Canada, a 13% increase
since 2002, announced the University of Toronto's Faculty of Nursing.
‘Only 18% of children with life-threatening conditions access specialized pediatric palliative care in Canada, a 13% increase since 2002.’
25% 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."
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.
- The number of programs grew from eight to 13 between 2002 and 2012 and included three free-standing pediatric hospices;
- The number of children who received specialized care during each one year study period increased four-fold from 371 to 1401;
- Of the children who received care during 2012, just over one third were under one year old;
- Only 15% of the children had cancer, while 36% had a congenital illness or condition that arises just before
or after birth;
- Children who received care through one of the programs
that included a free-standing hospice tended to be older and received
specialized services for longer than those who received care from a
program without a hospice;
- Of the children who died in 2012, half received
specialized care for only the last 30 days of life and one quarter only
received specialized care for one week or less;
- In 2002, we estimated that 5% of children who
might benefit received specialized pediatric palliative care; as of 2012
this proportion rose to 18%;
- Despite a four-fold increase in the number of children who
received care between 2002 and 2012, staffing levels over this period
only increased less than three-fold, thus staffing resources are not keeping
up with demand.
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
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
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.