‘End-of-Life’ Care Needs a New Name

If only palliative care had a different name. If it did, more families might be willing to accept it, a new study finds.

Researchers from the Princess Margaret Cancer Centre in Toronto, Canada, recently interviewed — and analyzed conversations with — 48 patients who had advanced stage cancers, as well as 23 caregivers from an earlier randomized controlled study of 461 patients.

The findings, published in the Canadian Medical Association Journal, reflect what many who have been through cancer or the dying process with a family member already know: There is an ingrained stigma attached to the label “palliative care.”

“Initially, both groups perceived palliative care as synonymous with death, as care at the end of life in a setting where they would die, and in general as a frightening, anxiety-provoking thing they wanted to avoid,” principal investigator Dr. Camilla Zimmermann said in a statement.

Zimmerman said the stigma unfortunately prevents families from gaining earlier access to resources that might help improve a loved one’s quality of life and signals a need to rebrand palliative care.

Dr. Toby Campbell agrees many families don’t access palliative care until it may be too late.

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He disagrees, however, that the practice needs a name change and said it’s not the first time the argument has been made. Campbell is chief of UW Health’s Palliative Care program in Madison, Wisconsin, and director of its medical school’s palliative care fellowship training program.

“The problem with this, first and foremost, is that what we’re doing will still be the same. We’re not changing our practice. We’re just calling it something different. Which means that if you repeat this in another five years and ask the same people if they would be open to supportive care, they’re going to have figured out what supportive care means. It’s the main reason I disagree with this whole thread of just changing the name. We aren’t changing the practice. We aren’t changing the patient population. We aren’t changing anything other than the name. So that’s just a very short-term solution,” Campbell told LifeZette.

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He said perhaps the best thing doctors can do, instead of trying to mask the conversation in a nicer word or a different term, is to talk with patients about palliative care.

“They need to try and talk with their patients about serious illness so that everyone is on the same page.”

But that’s hardly an easy conversation for many to have, especially since a majority of health care consumers have no idea what the term palliative care means. A fair number of doctors aren’t sure how to explain it either.

“Patients and families, when you explain what palliative care is by its merits — then they are strongly supportive. Everyone. Regardless of their political belief systems,” Campbell said, citing a study done by the American Cancer Society.

“Palliative care is an extra layer of support for people facing serious illness that works in tandem with your doctor and team to address symptom concerns, and other issues related to a serious illness. And it can be provided together with curative treatment.”