(Ottawa) – Nearly every Canadian believes that hospice palliative and end-of-life care are critical and should be available to anyone in need, but most do not know what services are available – or how to access them. A new Harris/Decima survey reveals that while the vast majority of Canadians support hospice palliative care, and integrating services as early as possible for people who are critically ill or aging, there remain many barriers to connecting people with those programs and services across the country.
“We know that introducing a broad range of palliative services earlier to people who are very ill, aging, or frail improves quality of life for people to live well until they die. It also provides a sense of control and reduces stress for the family,” says Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association. “But most Canadians don’t know what services are available – or that these services are available to people living at home. Given we are all living longer, often with chronic illness, this needs to change.”
The Harris/Decima survey was conducted for The Way Forward, a three year nation-wide initiative that is working with healthcare professionals and governments to integrate high quality hospice palliative care earlier into the ongoing care of Canadians with serious life-limiting illness.
“Our Government understands the very difficult challenges faced by Canadian families when they are caring for aging parents and other loved ones who need palliative care,” says the Honourable Rona Ambrose, Minister of Health. “Supporting The Way Forward initiative will help to deliver palliative care in a range of settings, by a variety of providers, while providing services in a cost-effective and sustainable way.”
The Harris/Decima survey identified five main findings:
- Support for palliative care: There is nearly unanimous support among Canadians for hospice palliative care (96%), with the vast majority believing it has a positive impact in reducing stress and the burden on the family (93%) and improving quality of life (94%).
- A team approach early on: Most Canadians (87%) believe that a palliative approach to care should be available early on in the course of a disease and most (94%) believe it should include all of their care providers – whether a family physician and nurse, a disease specialist and other health professionals.
- A desire for choice: Nearly all Canadians (93%) believe palliative care services should be available in the setting of their choice (e.g. home, long-term care, hospital, etc.) but less than half (49%) are aware they can access these services outside of a hospital, hospice or facility and currently relatively few (21%) report having any personal experience with palliative care services.
- A disconnect between belief and action: Although nearly all Canadians (96%) believe it is important to have a conversation with loved ones about their wishes for care, not many (34%) have actually had a discussion, and only 13% have completed an Advance Care Plan to communicate their wishes.
- Open to guidance for early conversations: The majority of Canadians (73%) would like to get more information from their doctors so that they can plan and begin these important conversations. And most Canadians (80%) also feel these conversations should start when they are healthy or when they are diagnosed with a life-limiting disease.
“It’s clear that we need to better integrate palliative care services in the places where people want to live and die – and we also need to encourage patients, families and health care teams to talk about goals of care so more Canadians get the care want and deserve up to the end of life,” says Nadine Henningsen, Executive Director, Canadian Homecare Association.
Tools and resources to help people learn more about palliative and end-of-life care services and to start the conversation with a loved one can be found at the Canadian Hospice Palliative Care Association website (www.chpca.net), as well as through Speak Up: Start the Conversation about End-of-life Care (www.advancecareplanning.ca). Information about work underway to integrate the palliative approach to care through The Way Forward initiative can be found at www.hpcintegration.ca.
To arrange an interview about the survey results, The Way Forward and palliative and end-of-life care services, please contact: Vanessa Schwarz, Communications Officer, Canadian Hospice Palliative Care Association, 613-241-3663 ext 229, [email protected].
The Way Forward: an integrated palliative approach to care
Launched in 2012, this three-year initiative funded by the Government of Canada seeks to change how Canada thinks about and approaches aging, chronic, serious and life limiting illness and dying; and how to extend the benefits of hospice palliative and end-of-life care, and advance care planning, to as many Canadians as possible. Tapping into palliative care knowledge and expertise across Canada, The Way Forward is focused on fostering collaboration between provincial and territorial governments, regional health authorities, agencies, clinicians and service providers, among others to improve quality of life, reduce emergency visits and hospitalizations, and make more effective use of health system resources.
 A quantitative online research survey of 2,976 Canadian adults. Completed using Harris/Decima’s proprietary online panel so is precluded from reporting a margin of error. Data were collected between July 5 and August 7 2013. Survey data were weighted using 2011 Census to reflect general population (gender, age and region).