How, not where, you die matters most to terminal patients

New Queen's-led study sheds light on end-of-life care issues for patients and their families

KINGSTON, Ont. The circumstances around their dying and not the location are what matter most to terminally ill Canadians, says Queen's University Professor of Medicine Daren Heyland.

A national study on end-of-life care led by Dr. Heyland, research director in the Department of Medicine at Kingston General Hospital, shows that patients rated dying at home as less important than having confidence and trust in the doctors looking after them. The results may cast doubt on current efforts to support more patients dying at home, says Dr. Heyland. At present, seven out of every 10 Canadians die in hospital.

Results of the study are published in the current edition of the Canadian Medical Association Journal (CMAJ).

Also on the research team from Queen's are Sam Shortt (Centre for Health Services and Policy Research), Joan Tranmer (School of Nursing) and Miu Lam (Community Health and Epidemiology).

Conducted between 2001 and 2003 in hospitals in Kingston, Vancouver, Halifax, Toronto and Edmonton, the survey involved 434 seriously ill elderly patients and 160 family members. Out of 28 factors describing quality care, patients and family members rated "to have trust and confidence in the doctors looking after you" and "not to be kept alive on life supports when there is little hope for a meaningful recovery" as most important.

"To be able to die in the location of your choice, e.g. home or hospital" rated 24th of 28 from the patient's perspective and 14th of 26 from the family member's perspective.

Dr. Heyland heads a national research group on palliative and end-of-life care initiatives located at Queen's and McMaster, with affiliates at other Canadian universities and hospitals. Funded by the Canadian Institutes of Health Research (CIHR), the five-year project began in 2004 and focuses on care in hospitals, intensive care units and home settings.

This is one of five studies to be undertaken by the team. They will also examine how satisfied patients are with their care; how they make decisions about the kinds of treatments they receive at the end of life; the importance of where they die; and how aware patients are of the course of their disease and the odds of recovery.

"Our research focus is to describe, understand, evaluate, and ultimately, improve communication and decision-making at the end of life," says Dr. Heyland. "We believe the knowledge and tools generated by our research efforts will inform strategies to improve the quality of and satisfaction with end of life care."

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Composed of 13 institutes, CIHR provides leadership and support to more than 8,000 researchers and research teams in every province of Canada.

Contacts:
Nancy Dorrance, Queen's News & Media Services, 613.533.2869
Lorinda Peterson, Queen's News & Media Services, 613.533.3234

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