(Ottawa, ON) – Everyone has a reason for talking – or not talking – about the care they’d want if they couldn’t speak for themselves. The National Advance Care Planning in Canada initiative is challenging Canadians to tell their stories on April 16, 2014 – National Advance Care Planning Day.
“Recent surveys have told us that about six in ten Canadians believe it’s important to talk to someone about their wishes for care, but only 45% have done so,” says Louise Hanvey, the Project Director for Advance Care Planning in Canada. “We want to know why.”
The Project’s Speak Up website – www.advancecareplanning.ca – features a “Personal Stories” section for individuals to share their thoughts about why they have – or haven’t – made an advance care plan. The process of advance care planning includes communicating your wishes for care (in writing or in person) and naming a Substitute Decision Maker, someone who will speak for you if you can’t speak for yourself.
Stories on the Speak Up website include thoughts and opinions from Canadians both young and old. Belinda Hannan, for example, talks about how losing a friend at the age of 20 made her realize that she needed to face her fears around death and recognize it as a natural part of life. Chandra Vig recalls the importance of having many conversations in advocating for her husband’s stepmother, calling them a ‘gift’ that gave the family the ability to provide the care she wanted.
A recent Harris/Decima poll indicates that 45% of Canadians don’t want to talk about end-of-life care because they are ‘afraid of death’. 39% report being ‘creeped out’ by these types of conversations. The Speak Up website includes a number of tools to help make these conversations easier, including videos, wallet cards, workbooks and conversation starters.
“April 16th is National Advance Care Planning day – a great opportunity to reflect on your wishes for care and to share those wishes with those around you,” says Ms. Hanvey. “Speak up and make your voice heard.”
To read personal stories about advance care planning, or to share your own, visit: http://www.advancecareplanning.ca/personal-stories.aspx
For more information or to arrange interviews with ACP experts, contact: Vanessa Schwarz, 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.
What is Advance Care Planning?
Advance care planning is a process of reflection and communication, a time for you to reflect on your values and wishes, and to let others know your future health and personal care preferences in the event that you become incapable of consenting to or refusing treatment or other care.
What we know:
- Recent results from the multi-year ACCEPT study (Advance Care Planning Evaluation in Hospitalized Elderly Patients) reveal that the correct patients’ preferences for end of life care was written in their medical records only 30% of the time.
- The ACCEPT study also found that although nearly 48% of patients had completed an advance care plan and 73% had named a Substitute Decision Maker, only 30% had told their physician about it.
- 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 discovered that the lack of Advance Care Planning resulted in 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.
- A 2010 Canadian study of hospitalized, elderly patients found that offering more support for end-of-life discussions and advance care planning will have an immense positive impact on improving end-of-life care in Canada.
- A 2013 Harris/Decimal poll reveals that out six in ten Canadians believe that it’s extremely important to talk to someone about their end of life care preferences – but 56% haven’t done anything about it. 40% indicate that they are ‘creeped out’ by the conversation, however 62% would look to their health care provider for more information.
 JAMA Intern Med. 2013 May 13;173(9):778-87. doi: 10.1001/jamainternmed.2013.180. Failure to engage hospitalized elderly patients and their families in advance care planning. Heyland DK, Barwich D, Pichora D, Dodek P, Lamontagne F, You JJ, Tayler C, Porterfield P, Sinuff T, Simon J; ACCEPT (Advance Care Planning Evaluation in Elderly Patients) Study Team; Canadian Researchers at the End of Life Network (CARENET).
 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, Pichoa 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.