A researcher at the University of Alberta is helping to bridge a gap in Canadians’ knowledge about palliative care—and how to plan ahead for it.
In a 2016 IPSOS public poll, half of Canadians surveyed said they were unfamiliar with the terms “palliative care” and “advance care planning.”
“As patients and families with serious illness needing care go, if only half of them even know the terms, they don’t know how to plan or what to expect for care,” said Konrad Fassbender, assistant professor in the Division of Palliative Care Medicine in the Faculty of Medicine & Dentistry.
Along with Neil Hagen and Jessica Simon from the University of Calgary, Fassbender launched the Advance Care Planning Collaborative Research & Innovation Opportunities Program (ACP CRIO), a six-year study aimed at identifying the most effective ways to engage and educate the public on the subject. The team received two grants to help address the important gap and ultimately increase access to quality palliative care services.
What is palliative care?
About 25 per cent of all health-care resources are used by patients in the last six months of life, said Fassbender, scientific director for the Covenant Health Palliative Institute and a member of the Cancer Research Institute of Northern Alberta. Palliative care involves improving the quality of living for patients with serious illness—including those with a terminal diagnosis—and advance care planning is their written or verbal communication that ensures loved ones and health-care providers know about their care preferences.
“That’s really what this is about—letting people know what to expect and what choices they can make towards the end of life so they can have appropriate services and they can avoid suffering.”
The level of care is a matter of personal preference. One patient may desire every treatment available, regardless of the impact on their quality of life. Another may decide to forgo certain treatments so they can enjoy their final months more fully.
“That’s really what this is about—letting people know what to expect and what choices they can make towards the end of life so they can have appropriate services and they can avoid suffering,” Fassbender said.
Lack of standardization a challenge
One of the difficulties in increasing awareness of palliative care and advance care planning is that the specifics are different in every province and municipality across Canada. Advance care planning terminology also differs across the country, and because palliative care doesn’t fall under the Canada Health Act, there are likewise differences in approaches between jurisdictions.
“It’s a major barrier to understanding,” Fassbender noted. “If you have a heart attack, the treatment of heart attacks across the country is standardized: You’re seen by a cardiologist, you’re treated in a hospital, the treatment is well communicated. Palliative care is not the same.”
Getting comfortable being uncomfortable
Societal attitudes are another major barrier to awareness surrounding palliative care and advance care planning, said Fassbender.
“Death is an uncomfortable topic. People have coined the term ‘death-denying society,’ so our health-care system is designed to improve the length of life, but not enough attention is being spent on improving the quality of life.”
Cultural attitudes and personal life experiences can affect people’s comfort level in talking openly about death and dying. But a willingness to have open and honest conversations can empower patients to take their health into their own hands, Fassbender said.
“People don’t enjoy talking about it, but it really is about getting your affairs in order. That’s where advance care planning fits in. If you don’t get your affairs in order, someone else will make the decision for you.”
The palliative care “storefront”
Though there are many existing resources that explain palliative care and advance care planning, Fassbender and his team found that more engaging tools were needed to reach more Albertans.
As a one-size-fits-all approach to educating the public on palliative care hasn’t been cost-effective in the past, the group decided to create a “storefront” of sorts, a collection of resources that would be easily accessible for a wide variety of demographics. They envision patient education happening through the Alberta Palliative Care Storefront, accessible in community landmarks such as shopping centres, schools, recreation centres and libraries.
The storefront’s resource collection is based on several existing models, including Death Café, a website where people can gather virtually to discuss death and dying. Another, Conversations Matter, is a campaign developed by the National Institute of Nursing Research that seeks to increase the use of palliative care by children and teens living with serious illnesses.
“We chose these initiatives because they were being used elsewhere as an opportunity to engage the public, so we’re using these as a stepping stone to say, ‘How can we help make this topic more comfortable for you? How can we increase health literacy for the public in this area?'” Fassbender said.
Spread the word
Helping more Canadians know more about palliative care and advance care planning is important because everyone has to be their own advocate, Fassbender said.
“Medicine is complex, health-care providers are busy and often overwhelmed, and if you want good quality of care towards the end of life, you have to take some responsibility.”