Palliative care doesn't mean a patient is at death's door. Here's why

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.

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."

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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.