Suggestions for slipping a mortal coil

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WAYNE GLOWACKI / WINNIPEG FREE PRESs Psychiatrist Dr. Harvey Max Chochinov

On this long weekend, a little light reading to relax over with your morning coffee and croissant.

Today's topic: The meaning of life as told by the dying.

But first, an introduction is in order.

You might have read about Dr. Harvey Max Chochinov earlier this week. The Canadian Medical Association announced they were giving the 54-year-old Winnipeg psychiatrist its top honour this year for his pioneering research in what palliative care patients need most, and how to offer the kind of comfort pain pills never can.

A sense of dignity.

Death with dignity has become a cliché, but the kind of dignity Chochinov has researched for more than two decades runs deeper.

It was first identified 20 years ago in the Netherlands, where dying with dignity was invoked by both sides of assisted-suicide issue.

"But nobody had actually gone to dying patients and asked them what dignity was about," Chochinov recalled. "What it meant to them."

So he began asking palliative care patients in Winnipeg the dignity questions.

What Chochinov discovered was dignity for those who needed it most had more to do with emotional well-being, than physical requirements.

He found people lost their sense of dignity when they felt their life had lost meaning and purpose in its final stages.

Or, as Chochinov told me: "We looked at pain, we looked at physical symptoms, spiritual issues, psychological issues. The single most important predictor of people's dignity was, in fact, how people perceived they were seen. How people saw themselves to be appreciated or seen by others."

He recalled an example.

"I remember years ago looking after a young man with a brain tumour, who was very near the end of life. And I walked into his room one day and he was really at death's door, uncommunicative. But on his bedside table was a photograph of him when he was in perfect health."

The young man had been a bodybuilder.

"There was this striking juxtaposition of the skeletal remains of this young man and this bodybuilder in a photograph. And I remember being incredibly moved by the contrast."

It was years later, and hundreds of patient interviews later, before Chochinov made the connection to what they had learned and what he saw that day.

"This idea of how I'm perceived. How I am seen by others."

What resulted from all this research is what is now known as dignity therapy.

The practice offers palliative care patients the dignity of being listened to and having their life affirmed.

It involves a health-care provider sitting with a palliative care patient and asking a questions that allow the person to reflect on their life. The conversation is recorded and given to the family.

"What dignity therapy is meant to do is to engage people in a conversation where they have an opportunity to address things that they feel matter, that they feel are important," Chochinov explained.

They're asked to share their life story, what they remember most and what was most important to them.

The questions are open-ended.

What are your most important accomplishments, and what do you feel most proud of? Are there particular things that you feel still need to be said to your loved ones, or things that you would want to take the time to say once again? What are your hopes and dreams for your loved ones? What have you learned about life that you would want to pass along to others? Are there words or perhaps even instructions you would like to offer your family to help prepare them for the future?

In the process, the palliative care patient also has the chances to apologize or express regret.

And, I would imagine, laugh, cry and just be themselves again.

There's something else that commonly happens.

In those moments, Chochinov said, the person who is dying feels he or she is continuing to be a caregiver and strong provider themself.

That, in itself, brings dignity. And continues to give meaning to life.

Near the end of our conversation, I told him what the late baseball player Jackie Robinson said about the meaning of life. "A life is not important except in the impact it has on other lives."

Then I asked Harvey Chochinov one of his own questions.

What has been the most important thing in his life?

It's family, of course.

He was grateful for the award the CMA is bestowing on him. But he put it in perspective. That's not what the people who care about him will remember most about him, he said.

"What's more important is the people we love and the people who love us back. The loving relations we have with people: That's what matters."

Words to live and to die by.

From one who's done the research.

gordon.sinclair@freepress.mb.ca

Settling accounts

THESE are some of the questions designed to frame a conversation between health-care providers and a palliative care patient in hopes of encouraging the person to talk about their life and what matters most to them.

Tell me a little about your life history, particularly the parts you either remember most or think are the most important. When did you feel most alive?

Are there specific things you would want your family to know about you, and are there particular things you would want them to remember?

What are the most important roles you have played in life (family roles, vocational roles, community-service roles, etc.)? Why were they so important to you, and what do you think you accomplished in those roles?

Are there particular things that you feel still need to be said to your loved ones, or things you would want to take the time to say once again?

-- Dignityincare.ca and the Journal of the American Medical Association

Republished from the Winnipeg Free Press print edition August 4, 2012 B1