McMaster University

McMaster University

Faculty of
Health Sciences

Studies show Canadians not prepared for end of life

Published: April 16, 2012
John You
Dr. John You, an assistant professor of the Michael G. DeGroote School of Medicine and a staff physician at Hamilton Health Sciences (HHS)

National Advance Care Planning Day is Monday, April 16, 2012

Two new studies have shown that Canadians are not prepared for the end of life. A national study of elderly, ill Canadians and their caregivers (the ACCEPT study), as well as the results of a national Ipsos-Reid poll indicate that most Canadians have not talked to their family or their doctors about their preferences for care should they be unable to speak for themselves.

McMaster University researcher and Hamilton Health Sciences (HHS) physician Dr. John You led the ACCEPT study involving face-to-face interviews with seriously ill hospitalized patients at HHS and their family members about the quantity and quality of end-of-life communication they experienced before and during their hospital admission. The study examined whether patients had designated a decision maker, reflected about their attitudes towards life-sustaining treatments, discussed these issues with family members or healthcare providers, written a care plan, and evaluated their satisfaction with end-of-life communication and decision-making.

"What struck me about the findings was that most seriously ill hospitalized patients and their family members are thinking about the kinds of life-sustaining treatments they would or would not want if their condition deteriorated. But fewer had discussed this with a family member and far fewer had discussed this with a physician," said Dr. You, an assistant professor of the Michael G. DeGroote School of Medicine and a staff physician at HHS.

In 2009, HHS introduced a new Quality End-of-Life Care initiative, led by Dr. Andrea Frolic, clinical and organizational ethicist at HHS, to encourage members of the care team to initiate conversations with seriously ill patients about their end-of-life wishes. This initiative was aimed at giving physicians and staff a better understanding of the wishes of the approximately 2,000 people who die annually at HHS from chronic or progressive diseases where death is foreseeable weeks or months in advance.

"The study results are showing that physicians are not engaging frequently enough in end-of-life discussions with patients and families, and highlights many ways in which the quality of these discussions can be improved." said You.

More than 25 associations across Canada have joined together to champion April 16 as National Advance Care Planning Day — a day for Canadians to speak with family members and friends about their wishes for end-of-life care.

Advance care planning is a process of reflection and communication about personal care preferences in the event that you become incapable of consenting to or refusing treatment or other care. The most important aspects of advance care planning are choosing one or more substitute decision makers — someone who will speak on your behalf and make decisions for you when you are not able to do so yourself — and having a conversation with them about your wishes.

Research results released today from the ACCEPT study of elderly, sick patients and their caregivers indicate that more discussions are needed — both between family members and with doctors.

"One would think that the patients in our study, most with about six months to live, would be more engaged in advance care planning. But only about 20 per cent had been informed by their doctors about their prognosis, and 44 per cent weren’t actually sure what the goals were for their current treatment," said Daren Heyland, the principal investigator of the study and a professor of medicine at Queen’s University.

A number of study participants, despite their condition, had not created an advance care plan as they felt that the discussion was not 'relevant' to them, even though the majority of them had an opinion about life-sustaining treatment when asked, and a large number (46 per cent) indicated dissatisfaction with their lack of knowledge of 'comfort measures' — treatments that do not cure but keep patients comfortable at the end of life.

A March 2012 Ipsos-Reid national poll found that 86 per cent of Canadians have not heard of advance care planning, and that less than half have had a discussion with a family member or friend about healthcare treatments if they were ill and unable to communicate. Only 9 per cent had ever spoken to a healthcare provider about their wishes for care. Another study is currently underway across Canada to examine advance care planning from the perspective of health care providers.

The 'Speak Up: start the conversation about end of life' awareness campaign of the Canadian Hospice Palliative Care Association has several valuable resources to help Canadians talk about their wishes, including the website Speak Up that provides workbooks, wallet cards and links to provincial/territorial legislation and planning information. There are also tips and videos to help people begin these often difficult conversations.

"As health care technologies and lifesaving interventions continue to improve and people live longer — many with complex medical conditions — advance care planning becomes increasingly important," said Heyland. "We need to communicate our values and wishes around the use of certain procedures at the end of life, and what we believe gives our life meaning."

The ACCEPT study was funded by the Canadian Institutes of Health Research and the Hamilton Academic Health Sciences Organization (HAHSO) Innovation Fund. The Ipsos-Reid study was sponsored by CARENET and Fraser Health.

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