Media Releases

New U of T study finds that 1 in 5 children who might benefit from pediatric palliative care do not access services

October 13, 2016

Findings come as Medical Assistance in Dying option is considered for children

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.

Key High­lights:

  • The num­ber of pro­grams grew from eight to thir­teen 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 4‑fold from 371 to 1401;
  • Of the chil­dren who received care dur­ing 2012, just over one third were under one year old;
  • Only 15 per cent of the chil­dren had can­cer, while 36 per cent 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 per cent of chil­dren who might ben­e­fit received spe­cial­ized pedi­atric pal­lia­tive care; as of 2012 this pro­por­tion rose to 18 per cent;
  • Despite a 4‑fold increase in the num­ber of chil­dren who received care between 2002 and 2012, staffing lev­els over this peri­od only increased less than 3‑fold, thus staffing resources are not keep­ing up with demand.

The Study

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 (


For more infor­ma­tion or to arrange an inter­view, please con­tact:

Dr. Kim­ber­ley Widger