Time for a palliative care makeover

James M. Berklan
James M. Berklan

Celebrity party animals have done it. Nursing homes have done it. Now, it's time for palliative care providers to do it.

The “it” is undertake a rebranding campaign.

Find a misbehaving movie star in need of some good publicity and image specialists are brought in to regain the upper hand.

Or take nursing homes, which even without bad behavior found themselves desiring a different vibe. Voila! Now we have virtually zero skilled care facilities with “nursing home” in their name. In fact, the phrase nursing home has been all but abandoned by caregivers, never appearing on new facilities and changed on countless existing ones.

That's where palliative care comes into play, according to Canadian researchers. Their study of cancer patients produced a handful of stark, and sometimes startling, discoveries.

No. 1: Most study subjects said they found the idea of palliative care scary or stigmatizing, or both.

No. 2: As a result of No. 1, many patients who can be helped delay entry into palliative care programs.

No. 3: The media help perpetuate negative stereotypes of palliative care.

No. 4: And this is a big one: Also perpetuating a negative connotation of palliative care are doctors and nurses.

"Importantly, the source of this stigma was mainly in the medical system because doctors and nurses had given the impression that palliative care was only end-of-life care,” noted lead researcher Camilla Zimmermann, M.D., Ph.D., the head of the palliative care program at Toronto-based University Health Network.

Getting media and these important clinicians (and, I'd add, long-term care workers) to properly characterize palliative care would go a long way toward making people feel better.

Zimmermann is more pointed. She says that until those making referrals and performing palliative care — doctors and nurses, that is — get their act together with a common, appropriate definition, it would be “unreasonable" to expect patients and families to embrace the concept of palliative care.

So let's do a little review. Mcknights.com's glossary defines palliative care, in part, as: “Medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than providing a cure. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness. Sometimes incorrectly used as a synonym for hospice care, which itself may employ palliative care steps in a person's final stages.”

The World Health Organization emphasizes that palliative care “will enhance quality of life, and may also positively influence the course of illness ... "

When it comes to hospice care, many nurses and doctors seem to be confusing patients. Hospice is administered under a different business model and is meant to acknowledge that the end of life is near, often very near.

The inappropriate intermingling of these concepts frightens many patients, notes Zimmermann. She is also the director of the palliative care program at the Princess Margaret Cancer Centre and talks about her research here. Study results were published April 18 in the Canadian Medical Association Journal.

A rebranding campaign for the phrase “palliative care” is needed, Zimmermann and colleagues agree.

Just as skilled nursing operators sought and found refuge from an unattractive “nursing home” categorization, so should palliative care providers seek a friendlier label.

And remember, it was just last fall that a very image-conscious group of senior care providers who run continuing care retirement communities tackled the task of renaming their services. Granted, this is merely to provoke sales and enhance marketing efforts, primarily among relatively healthy seniors. But it shows that the proud legions who provide palliative care have nothing to apologize for if and when they embark on their own campaign to rebrand.

(Here's an idea: How about re-assembling the high-powered marketing teams that collaborated to come up with the CCRC alternative to bring some relief to palliative care specialists and those under their care?)

The stakes are quite real. Those who stay away from palliative care due to stigmatization are causing themselves and the loved ones around them unnecessary and often quite significant harm.

In Zimmermann's study, a group of cancer patients who received early palliative care in an outpatient clinic setting in addition to “standard” cancer care showed improved quality of life compared to a group that received just standard care.

In follow-up interviews, both groups (at least initially) 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.”

But members of the intervention group came around and had their eyes opened. Those who received palliative care began to see it as relevant — a supportive way to improve quality of life.

They key to opening more eyes will be getting the word out, and that word should be “palliative.”

Do you have suggestions for what word or words should replace “palliative care”? Please share them in the comments below.

Follow Editor James M. Berklan @JimBerklan.

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Daily Editors' Notes

McKnight's Daily Editors' Notes features commentary on the latest in long-term care news and issues. Entries are written by Editorial Director John O'Connor, Editor James M. Berklan, Senior Editor Elizabeth Newman and Staff Writer Emily Mongan.

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