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

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 today 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.

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).

“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.

The Institute for Clinical Evaluative Sciences (ICES) is an independent, non-profit organization that uses population-based health information to produce knowledge on a broad range of healthcare issues. Our unbiased evidence provides measures of health system performance, a clearer understanding of the shifting healthcare needs of Ontarians, and a stimulus for discussion of practical solutions to optimize scarce resources. ICES knowledge is highly regarded in Canada and abroad, and is widely used by government, hospitals, planners, and practitioners to make decisions about care delivery and to develop policy. For the latest ICES news, follow us on Twitter: @ICESOntario

The Hospital for Sick Children (SickKids) is recognized as one of the world’s foremost paediatric health-care institutions and is Canada’s leading centre dedicated to advancing children’s health through the integration of patient care, research and education. Founded in 1875 and affiliated with the University of Toronto, SickKids is one of Canada’s most research-intensive hospitals and has generated discoveries that have helped children globally. Its mission is to provide the best in complex and specialized child and family-centred care; pioneer scientific and clinical advancements; share expertise; foster an academic environment that nurtures health-care professionals; and champion an accessible, comprehensive and sustainable child health system. SickKids is proud of its vision for Healthier Children. A Better World. For more information, please visit www.sickkids.ca. Follow us on Twitter (@SickKidsNews) and Instagram (@SickKidsToronto).

FOR FURTHER INFORMATION PLEASE CONTACT:

Deborah Creatura
Media Advisor, ICES
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(o) 416-480-4780 or (c) 647-406-5996

Caitlin Johannesson
The Hospital for Sick Children (SickKids)
[email protected]
416-813-7654 ext 201436