Children with cancer much more likely than adults to receive high-intensity end-of-life care despite access to palliative care

TORONTO, NOVEMBER 14, 2016 — About 40 per cent of children with cancer receive at least one form of high-intensity end-of-life care treatment according to a new study from the Institute for Clinical Evaluative Sciences (ICES) and The Hospital for Sick Children (SickKids).

“This difference in high-intensity end-of-life care between children and adults may reflect the unique challenges associated with paediatric palliative oncology. Most children are cured of their disease and paediatric providers comparatively have less experience initiating difficult discussions about end of life,” says Dr. Sumit Gupta, senior author of the study, scientist at ICES and paediatric oncologist at SickKids.

While 40.6 per cent of children with cancer receive at least one form of high-intensity end-of-life care treatment, the number is significantly lower for adults with advanced cancer, with only 22 per cent receiving at least one type of high-intensity end-of-life care. In this study, high-intensity end-of-life care was defined as more than one emergency room visit, more than one hospitalization or an ICU admission, within 30 days of death or intravenous chemotherapy within 14 days of death.

In addition, the study also found that the percentage of children experiencing ICU admission or intubation at the end-of-life is increasing over time.

This is the first North America study to examine high-intensity end-of-life care among children with cancer and was published November 14 in the Journal of Clinical Oncology.

The researchers identified all Ontario children under 15 years of age, diagnosed with a primary cancer, who subsequently died between 2000 and 2012 by or before the age of 18.

“Ontario children with cancer continue to experience high-intensity end-of-life care despite an increased focus in medicine on high quality palliative care. Previous studies have repeatedly shown that children with advanced cancer, many of whom received high-intensity medical care, experience high suffering and symptom burden at end of life,” adds Gupta, who is also Assistant Professor in the Department of Paediatrics, the Institute for Health Policy, Management and Evaluation, and the Institute of Medical Sciences at the University of Toronto.

While the outcomes of children with cancer have improved significantly over the last several decades, approximately 20 per cent will still die of their disease.

The researchers suggest that open and honest communication between clinicians and parents of children with advanced cancer to discuss prognosis and goals of care as well as access to community-based palliative care may influence the intensity of care at the end of life.

This work was supported by a Pitblado Discovery Grant from the Garron Family Cancer Centre at SickKids and ICES, which is partly funded by an annual grant from the Ontario Ministry of Health and Long-Term Care (MOHLTC).

This research is an example of how SickKids and ICES are contributing to making Ontario Healthier, Wealthier and Smarter.

“Predictors of and trends in high-intensity end-of-life care among children with cancer: A population-based study using health services data” was published today in the Journal of Clinical Oncology.

Author block: Alisha Kassam, Rinku Sutradhar, Kimberley Widger, Adam Rapoport, Jason D. Pole, Katherine Nelson, Joanne Wolfe, Craig Earle, Sumit Gupta.