Who will speak for you if you cannot speak for yourself?
(Ottawa, 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, 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.”
For more information: contact Vanessa Sherry, Communications Officer, Canadian Hospice Palliative Care Association, 613-241-3663 x229, [email protected].
The Canadian Hospice Palliative Care Association (CHPCA) is a national, bilingual charitable non-profit association with membership comprised of individuals and hospice palliative care programs and services from every province and territory. The CHPCA is a member of the National Advance Care Planning Task Group, comprised of representatives from a number of organizations and professions across Canada. The Task Group has collaborated to develop Advance Care Planning in Canada: A National Framework and Implementation and the Speak Up campaign.
CHPCA and the Advance Care Planning project appreciate and thank its funding partners, Canadian Partnership Against Cancer and The GlaxoSmithKline Foundation.
- Research indicates that patients who have end-of-life conversations with their doctors and family members are much more likely to be satisfied with their care, will require fewer aggressive interventions at the end of life, place less of a strain on caregivers and are more likely to take advantage of hospice resources or die at home. ,
- A 2008 study found that the absence of Advance Care Planning, in all its forms, was associated with worse patients’ ratings of quality of life in the terminal phase of the illness and worse ratings of satisfaction by the family during the terminal illness or in the months that follow death.2
- A 2010 Canadian study of hospitalized, elderly patients identified that there is a huge unmet need, that providing more support for end-of-life conversations and advance care planning will have a large positive impact on improving end-of-life care in Canada.
What is an advance care plan?
An advance care plan describes your wishes at the end of life, in the event that you cannot speak for yourself. Your plan may include information about your values, goals and preferences for procedures that you do or don’t want to have as well as other information about your care at the end of life (for example, religious rituals, being able to see a family member, dying at home or in palliative care, etc.). The most important aspects of advance care planning are naming 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. See: www.advancecareplanning.ca for details.
Who should make an advance care plan?
Every adult should make a plan. You can’t predict how or when you will die – so having a plan ensures that others know your wishes and that your voice will be heard if you cannot speak for yourself.
When is an advance care plan used?
You plan is only used if you are unable to make your own health care decisions (e.g. you are in a coma or your illness has impaired your ability to make decisions). Your representative can use it to guide your care and to express wishes on your behalf.
Can an advance care plan be changed?
Our lives – and the people around us – change over time. You will want to review your advance care plan regularly and revise it to be sure it reflects your wishes. Remember, it will only be used if you cannot speak for yourself.
 Wright, AA, et al. Associations between end-of-life discussion, health care expenditures, JAMA, 2008, 300 (14) 1665-1673
 Heyland, DK, Allan DE, Rocker G, Dodek P, Pichora D, Gafni A. Discussing prognosis with patients and their families near the end of life. Impact on satisfaction with end of life care. Open Medicine 2009, 3(20: 71-80
 Heyland DK, Cook DJ, Rocker GM, Dodek PM, Kutsogiannis DJ, Skrobik Y, Jiang X, Day AG, Cohen SR. Defining priorities for improving end-of-life care in Canada. Can Med Assoc J 2010;182(16):E747-E752.