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, 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.
That’s why over 25 associations across Canada have joined together to champion April 16th 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, a multi-year national 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% had been informed by their doctors about their prognosis, and 44% weren’t actually sure what the goals were for their current treatment,” says Dr. Daren Heyland, the Principal Investigator of the study.
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%) 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% of Canadians have not heard of advance care planning, and than 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% 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 has several valuable resources to help Canadians communicate their wishes, including a website (www.advancecareplanning.ca) with 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 life saving interventions continue to improve and people live longer, many with complex medical conditions, advance care planning becomes increasingly important,” says Dr. 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.”