Palliative care improves quality of life, but patients link it with death

Canadians with advanced cancer and their caregivers tend to link "palliative care" with impending death, and education is needed to help people realize the quality of life benefits such early care brings, doctors say. 

Palliative care is designed to improve the quality of life for patients with a serious illness and their families. 

The definition has changed over time. Originally, in the 1960s, it was defined as end-of-life care, mainly for people with cancer.

• DR. BRIAN GOLDMAN'S BLOG | Palliative care needs a new name

The definition is now much broader. International agencies such as the World Health Organization now encourage palliative care to be applied "early in the course of illness, in conjunction with other therapies that are intended to prolong life."

Several studies show early palliative care for people with advanced cancer also improves satisfaction with treatment and mitigates depression.

To look at perceptions of early palliative care, researchers at the Princess Margaret Cancer Centre in Toronto assigned people with common types of cancer, such as lung, gastrointestinal, colon and breast, to receive early referral for palliative care or standard cancer treatment.

Oncologists estimated all 48 patients had an estimated survival of six to 24 months when the trial began. A total of 23 caregivers were also interviewed.

Initially, patients in both groups linked palliative care to imminent death. One patient in the intervention group said, "It means death to me. It does. The end."

At recruitment, those in the intervention group felt shocked and afraid that palliative care was part of the study, said Dr. Camilla Zimmermann, head of the division of palliative care program at Toronto's University Health Network. She is the lead author of the study in Monday's issue of the Canadian Medical Association Journal. 

"In the intervention group, once palliative care had been explained to them, then they were fine with it," Zimmerman said in a journal podcast.

"Once it was explained to them that oh, no, no, it doesn't mean that you're dying, it's just a team that's an extra part of your care to improve your quality of life, then they thought, 'Well, you know, why didn't anyone think of this before? This is a fantastic idea and yes I'd like to participate.'"

Of the patients in the study, 22 in the palliative care group and 20 in the control group were receiving chemotherapy.

Over four months, those in the palliative care group went to the palliative care clinic at least once a month in addition to their standard care. Those in the control group could also attend the palliative care clinic if they requested. They weren't aware of the early palliative care arm of the study.

Those in the intervention group felt grateful and said that palliative care improved their pain control and ability to cope at home, Zimmerman said.

Need to 'rebrand' early palliative care?

While early palliative care became a normal part of their experience at the hospital, many patients were still uncomfortable using the term palliative care around relatives and families who weren't familiar with the new definition. Some said they called their care providers "pain specialists" because they treated discomfort, and it was a less frightening term.

A common theme, the researchers said, was that early palliative care should be "explicitly rebranded" and that health-care professionals should explain it better. Language used in obituaries and films contributed to the perception that palliative care was linked to death, patients and caregivers said.

Dr. Balfour Mount of Montreal coined the term "palliative care" to avoid references to a hospice, and the Canadian term caught on, according to the Victoria Hospice's website. 

In the study, none of the participants offered an alternative term for palliative care. Some in the intervention group were open to the suggested term "supportive care," while those in the control group generally saw no purpose in renaming it and didn't find it relevant to their own situation, the researchers said.

A limitation of the research is that it took place in only one clinic. Participants were highly educated and almost all were of European background.

'An extra layer of support'

Dr. Anthony Caprio, a geriatrician and hospice and palliative medicine physician at Carolinas HealthCare System in North Carolina, wrote a journal commentary published with study.

While a name change may help promote a more positive view of palliative care, he wrote, the stigma will persist if palliative care is recommended only as a default treatment when curative or life-prolonging treatments are deemed ineffective or undesired.

Zimmerman would like to see early palliative care woven into a complete package of excellent care, but oncologists and family physicians would need to be educated about the approach, she said.

It shouldn't be framed as a last resort, Caprio said.

"I often describe palliative care as an extra layer of support," Caprio said. "Who wouldn't want more support, especially during a difficult illness?"

The research was funded by the Canadian Cancer Society and the Ontario Ministry of Health and Long-Term Care.