Giving a voice to palliative patients

Giving a voice to palliative patients McGill University

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McGill Reporter
May 30, 2002 - Volume 34 Number 17
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Home > McGill Reporter > Volume 34: 2001-2002 > May 30, 2002 > Giving a voice to palliative patients

Giving a voice to palliative patients

Dr. Robin Cohen has had trouble with university ethics boards. She doesn't point any fingers, but some overseers of research are appalled at what she does -- which is ask the horribly weak, the people on the very edge of death who know there is no chance of survival, how they're doing.

Dr. Robin Cohen
PHOTO: Owen Egan

"They say, 'Oh, you can't ask that of someone who's dying!' But that's what they want to talk about," says Cohen, an assistant professor in the palliative care division of the Departments of Oncology and Medicine at McGill University (where the ethics committee is not squeamish about mere questions). Sometimes the opposition is a well-meaning paternalism. Sometimes it's based on the very real fear of dealing with death itself. But talk, says Cohen, should not be stifled.

"It's therapeutic in some way," she says. "We are careful not to use the word death or even cancer because some are not ready. We don't avoid asking the question, we just ask it more gently, because we don't know when we walk in where people are at."

Cohen is the principal investigator in a ground-breaking four-year study of the dying in the relatively new field of palliative care. Patients and their family caregivers (if they have one) in five Canadian cities will be asked to fill out questionnaires about how they feel.

Cohen's not just focusing on the physical symptoms. She's expanding the definition of medical care to the mind and the emotions, to the existential and spiritual health of the patient.

Not everyone approves. "People think of it as a frill, [feelings are] not something people think of as integral. But if you walk into a room and ask how they are, they answer physically. If you sit down and ask 'how are you really,' they realize you're interested in more than just the body, it makes it okay for them to talk about it."

The average age of those in palliative care is 60; those in their 20s are rare, and the number of patients goes up by the decade. Ninety-five percent have some form of cancer.

Even doctors themselves have a hard time with palliative care. To refer a patient is to admit that treatment isn't working, and that the physician has failed. So the transfer often comes quite late.

The patients, too, have grown up watching Star Trek's astonishing science and read miraculous stories of recovery in the media. The 50 percent of those who are diagnosed with cancer and die don't make it to the front page.

You can't measure survival rates. Certainly some live -- Cohen says she sees few people with AIDS these days. When they began discovering drug cocktails that worked, patients rose from their deathbeds and went home.

While that's something to be celebrated, it's rare.

The goal of palliative care is to improve the quality of life along the road to death. "I'm trying to find data to show the obvious. The people who run health care and set public policy don't want to look at the letters we get from families, they want hard data. That is the language of medicine of the people in power. We have to talk their language."

One of Cohen's colleagues is trying to quantify dignity -- "because people want to die with dignity."

The results from the questionnaire itself are changing Cohen's ideas. "What was surprising was the separation we get. Anxiety and depression and fears are very separate from a sense of meaning. Psychological factors are more closely related to physical symptoms than they are to the existential domain. I wouldn't have necessarily predicted that."

Also, feeling that your life mattered will make you happier.

Cohen's Quality of Life questionnaire (developed with McGill's Dr. Balfour Mount) has 17 questions that run the gamut, with a scale from 1 to 10 for answers. They include:

  • Over the past two days, how much of the time did you feel sad? never...always

  • Over the past two days, when I thought about my whole life, I felt that in achieving life goals I have: made no progress whatsoever...progressed to complete fulfillment

  • To me, the past two days were: a burden...a gift

  • Over the past two days, the world has been: an impersonal unfeeling place...caring and responsive to my needs.

Often the questionnaire is read out -- because the patient is illiterate, or too weak to handle the pencil. It takes about 15 minutes. Most patients land in the middle of the scale -- and those are the ones who, with a little more help, can change their quality of life for the better, Cohen believes.

"We don't prescribe how to die," Cohen says. But palliative care that helps with the spiritual and existential can only help.

Her new study, funded by a $555,659 grant from the National Cancer Institute of Canada and monies raised by the Canadian Cancer Society, looks at the last three months of life and three months into the bereavement period of the family caregiver. No one's ever done that before -- because of the queasiness of intruding on such private moments.

Cohen likes to work with the dying. "It's partly because there's no bullshit. They don't have time for it. The focus is on life and living as fully as possible, rather than on dying. I like dealing with people straightforwardly."

Very few researchers are working in palliative care -- maybe 100 worldwide, Cohen says, despite the guarantee of a clientele in the billions. The field is only about 30 years old, and it has gained momentum only in the last few years. That means Cohen, at a mere 41 and at McGill University for 10 years, is nudging the top of her profession. "It's very strange, because I'm such a young investigator."

As principal investigator, she rarely talks to the patients now, and misses it. A bad rat allergy helped push this psychologist (who specialized in rodent pain and the brain) into studying humans many years ago -- and now she finds herself farther away from the people she loves chatting with.

But thousands may end up talking to her through the questionnaires. There's interest in China and Poland, she says, and a request for a Spanish translation.

Cross-cultural testing is still in the idea stage, but Cohen hopes the ideas will hold. "My belief, but it needs to be tested, is that deep down, we're all the same. Maybe it's a romantic notion."

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