Palliative care doesn't mean a patient is at death's door. Here's why
Palliative care experts say the field needs a rebrand, so that patients know all their options
Palliative care has an image problem.
Despite what people think, it's not some kind of "Grim Reaper service," say two of Canada's leading experts in this field of medicine.
Ideally, it should focus on improving a patient's quality of life when they are facing a potentially "life-threatening illness," says Dr. Samantha Winemaker who, with researcher Hsien Seow, is on a mission to change the way patients and their physicians think about palliative care.
"I think people think palliative care is about dying and death, and by accepting it, you're giving up hope," Seow told Dr. Brian Goldman, host of CBC's White Coat, Black Art.
But it's not about giving up on life-extending treatment options, Seow said.
"Really, when we break it down, it's the exact opposite," said the Canada Research Chair in Palliative Care and Health System Innovation. "It's about living your fullest every day and every step along the journey."
Winemaker, a physician from McMaster University in Hamilton, Ont., who has specialized in at-home palliative care for 20 years, is working with Seow to encourage family physicians and other health-care workers how to incorporate palliative care approaches into their own practices. They're hosting a podcast, speaking to professional groups around the world, and they've written a book called Hope for the Best, Plan for the Rest: 7 Keys for Navigating a Life-Changing Diagnosis.
And they're urging Canadians to seek palliative care much earlier if facing a progressive illness to ensure they have as much information and choice as possible.
Information is power
Known as "Dr. Sammy" to her patients and their families, Winemaker says being ready to have difficult conversations varies from person to person. But after caring for thousands of people, she's found that "having less information because we think we're protecting people or that we don't want it just yet, will result in a family having a more in-the-dark illness experience," with their choices becoming "very reactive and crisis-driven."
Seow says numerous studies have found that patients and families want clinicians to be more upfront about their prognoses.
"They do want to know about what to expect in the future. They do want to plan ahead," said Seow, who is also a professor in the department of oncology at McMaster University. "However, there's also research that says people don't want to prepare for their death. So there is this balance between walking two roads, which is hoping for the best but planning for the rest."
LISTEN | Why palliative care isn't just for patients
White Coat, Black Art accompanied Winemaker, who is also an associate professor in the palliative care division of McMaster's department of family medicine, on a visit to the home of Ken Hajas, who was recently diagnosed with Stage 4 prostate cancer.
Winemaker asked him how he was adjusting to the news.
"I guess I am adjusting, but so far, I'm just comfortable, that's all. Whatever happens is going to happen, and I'm willing to accept it," Hajas said, noting, however, that he'll do all he can to prolong his life.
Winemaker says she goes into those first meetings to try to get to know the patient and their family — to find out both how much information they have about palliative care and what they might be ready to receive.
Hajas said he hasn't asked about how much time he has left.
"I'll ask that question later, maybe. But right now I feel so good that it seems redundant," he said.
But his wife, Kathy Hajas, and daughter Sue Barker want a better sense of his life expectancy — and he gave his permission for Winemaker to have those discussions with them.
"I think for Mom and I, and maybe my sisters, I think it's better for coping if you know more information and you have time to digest it," Barker said. "The worst part of this journey, just for me personally, has been the not knowing."
'We felt swamped'
When Shelley McCarthy and her family were first grappling with her Stage 4 thyroid cancer diagnosis in 2018 — four years before she died — they had an overwhelming number of health-care workers to navigate and information to digest.
McCarthy's care involved a head and neck surgeon, radiation oncologist, medical oncologist, neurologist and family physician, said Winemaker. "And she had an orthopedic team because her thyroid cancer was also in her bones."
Even though everyone in the family had the advantage of a good education, "We felt swamped," said McCarthy's husband, Terry, in a recent interview.
The experience left the family feeling the health-care system was fragmented and compartmentalized, with "lots of emphasis on physical care … but not nearly enough on communication and support," he said.
That changed when McCarthy was referred to Winemaker and registered nurse Jenn Morrit, who deliver care in patients' homes.
McCarthy's eldest daughter, Tara Kerr, said she initially felt alarmed when she learned her parents had set up an appointment with a palliative care team so soon after they'd learned her mother's diagnosis was terminal.
"I remember thinking, 'What in the world are we doing? This is too soon.' But no, it was exactly what we needed," Kerr said. "And I'm so, so grateful that we had them from the start … That open environment, that ability to talk through those difficult things and ask the questions … It really put us at ease."
Limited access
Although access to palliative care in Canada is limited, it's also improving. A 2023 report from the Canadian Institute for Health Information (CIHI) found that 58 per cent of Canadians who died in 2021–2022 received palliative care compared to 52 per cent in 2016–2017. But despite most people's desire to spend their final days at home, only 13 per cent received in-home palliative care — the kind Winemaker and her team provide — in 2021-2022.
The CIHI report cited a range of barriers to receiving palliative care, particularly in a home-based setting, including age — seniors aged 65 to 84 at time of death were the group most likely to receive palliative care while those over 85 were the least. Other factors included limited access in rural areas and country of origin, with those born outside of Canada being less likely to be referred to palliative care, as were those whose disease is anything other than cancer.
One of the other barriers, Winemaker said, is a lack of education for doctors about palliative care.
"There is absolutely no mandatory curriculum across the country in medical training and palliative care," she said. "And if it does exist, it's very spotty."
But palliative care shortages are not just a problem in Canada. A study published this week in The Lancet Global Health found that nearly 74 million people are in need of palliative care globally, an increase of 74 per cent in three decades.
Where investments have been made in palliative care, though, they've proven to bring good returns, Seow said. "There's tons and tons of randomized studies that demonstrate that palliative care leads to better patient outcomes, like less symptom burden, more satisfaction and in fact, also saves the health system money by avoiding unnecessary hospital visits."
Luckily, improving access doesn't hinge on training more palliative care specialists alone, said Winemaker.
"I think every cardiologist, virologist, nephrologist, hepatologist, neurologist, oncologist, family practice [physician], all of us have a stake in the game and all of us need to be providing a palliative approach.
"In the future, personally, I hope no one needs us because we've done such a good job integrating a palliative philosophy of care into all care providers competence that we don't have to label it palliative care. It just becomes very amazing, person-centered care delivered by everyone."
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