The case for dignity

By Sabrina Smith

Several years before his sister Ellen died, Harvey Max Chochinov found himself at her bedside in intensive care, watching the numbers on her monitors and bracing for the next decision.

Ellen had lived her whole life with cerebral palsy, her body growing more strained with time, each breath harder won. Now she was nearing respiratory collapse.

The attending physician moved methodically through Ellen’s chart, her vital signs, the clinical calculus of what came next. Then, the physician asked him a question.

“Does she read magazines?”

The question—the only personal one the physician asked—might have seemed small and harmless. To Chochinov [MD/83, PhD/98], it was a proxy for worth, a way of deciding what kind of life Ellen lived as a disabled person and whether hers was a life worth saving.

He didn’t have time to tell stories about the family cottage at Winnipeg Beach, or the way Ellen could light up a room, or the damage she did on a dance floor with her electric wheelchair. He had seconds to make his sister visible as a whole person.

“Yes,” he said. “She reads magazines. But only when she’s in between novels.”

That moment, which he describes in his latest book In Search of Dignity: A Lifetime of Reflections, captures what Chochinov has spent his career trying to put into practice.

A Distinguished Professor of Psychiatry at UM, Chochinov is one of the world’s leading researchers in palliative care. For decades, his work has focused on dignity, and on what helps people feel like themselves when serious illness takes so much away. 

“One of the things that happens for somebody confronting illness, especially serious illness, is an assault on sense of self and personhood,” Chochinov says. “In contemporary medicine, there’s a danger of things becoming very transactional and mechanistic. That can be the source of tremendous human suffering.”

Chochinov’s research shows that dignity is shaped most by how patients feel they are regarded by the people caring for them. When patients don’t feel seen, suffering deepens.

One of the clinical tools Chochinov developed is called Dignity Therapy.

It involves a recorded conversation guided by questions about a person’s life, values and what they want remembered. The session is transcribed into a document the patient can keep and share with loved ones. His studies have also shown that including information about personhood on medical charts enhances clinicians’ sense of empathy and respect. 

(Chochinov recalls a long-time dialysis nurse who admitted that, over time, she started to see patients as “kidneys on gurneys.”)

Backed by more than a dozen systematic reviews spanning two decades, Dignity Therapy has been shown to ease distress and improve quality of life for end-of-life patients. Developed and first introduced in Manitoba, it has since become “the most studied non-pharmacologic intervention in palliative care.”

In his book In Search of Dignity, published in November, Chochinov tells the story of “Mr. J,” one of the first patients to try what would become Dignity Therapy. He was a 67-year-old man with end-stage gastrointestinal cancer, admitted to palliative care after going on a hunger strike and saying that if he could “press the button,” he would.

When Chochinov was asked to see him, the consult question was depression. But he couldn’t identify a psychiatric disorder driving what Mr. J was going through. What was pushing Mr. J toward death, Chochinov recognized, was loss of meaning and hope.

Chochinov offered a prototype of Dignity Therapy, and Mr. J was immediately interested. He told Chochinov he would defer any decision to “push the button” until the task was completed.

In the days that followed, Mr. J used the sessions to share the life he wanted remembered—his parents, living through war, immigration, marriage and the pride he took in his children and grandchildren.

When Chochinov returned with the finished document, Mr. J was too weak to take it. His wife accepted it at the bedside. “This will be a blessing to our family,” she said.

“Mr. J certainly was a blessing in my life and work,” Chochinov writes, “and helped move the field of palliative care in a direction that has embraced broader considerations of human dignity.”

How do you practise dignity-conserving care in a health system where clinicians are stretched thin, and the headlines keep reminding us of it?

Chochinov gets the time objection everywhere. 

“Time is an important commodity. There only is so much time,” he says.

For him, the answer isn’t “do more.” It’s to bring the relational back alongside the transactional. 

“If we treat human beings the way we would automobiles on an assembly line, people get hurt,” Chochinov says. 

He points to a moment from one of his talks at the Mayo Clinic. A neurosurgeon took exception, insisting he was busy and didn’t have time for anything “extra.”

Chochinov’s response was this question: do you have time to ask patients what you should know about them as a person so you can take the best care of them possible? He calls it the Patient Dignity Question. 

It fits what he describes as the “tone of care.” Even when the clock is fixed, the experience can shift. 

“If you’ve got three minutes, you’ve got three minutes to either be fully present and attentive and not distracted,” Chochinov says, “or you have three minutes in which you can act like somebody who’d rather be elsewhere.”

A study he often cites makes that idea tangible. Clinicians spent the same amount of time at the bedside, but when they sat instead of stood, patients felt the clinician had been there longer. They also described a more positive interaction and a better understanding of their condition.

And when the question shifts from bedside practice to the bigger system—how to actually change a culture like this—Chochinov is blunt about what he’s learned. 

“It’s not good enough to simply publish papers,” he says. Research matters, but “knowledge translation takes time, skill and effort.”

Change, in his view, has to be heard from multiple vantage points: clinicians, health-care administrators and the people receiving care. That’s why he’s kept writing for public audiences alongside the academic work.

As he puts it, “Patients won’t care what you know until they know that you care.”

Physician-assisted death was part of what first pulled Chochinov toward dignity as a research question.

In the early days of his work, he read a Dutch study reporting that, according to physicians, loss of dignity was the most common reason patients sought assisted death.

“If dignity was worth dying for, dignity was worth studying,” he writes.

That thread would later run through Canada’s Medical Assistance in Dying (MAID) story. After the Supreme Court’s Carter v. Canada decision legalized physician-assisted death under certain conditions, the federal government appointed Chochinov to chair the External Panel on Options for a Legislative Response.

His views on MAID are layered. He’s written about it and has been close to the policy process, but he’s clear that his core research focus has been elsewhere. What he does return to is the clinical reality behind a request. 

“The wish to not be alive is an expression of human anguish,” he says. “The clinical response, not a legalistic response, is to sit down and lean in. What is that about?”

He also worries that choice can get distorted if care is lacking or when inequities are present. If someone is suffering and the right supports are not available, MAID can feel like the only way out. 

In his view, the job is to understand what has brought a person to that point, and that is where research at UM is going next. A PhD candidate supervised by Chochinov, Salina Pirzada, is interviewing Manitoba patients who have formally requested MAID to better understand their motivations. 

For Chochinov, death isn’t abstract. It’s the subject of his life’s work, and that proximity has shaped how he moves through the world.

People sometimes ask if studying dying makes him more prepared for his own death. He pushes back on the premise.

“The truth is, you know, I’ve never died. Not even once,” he says.

What it has changed, he thinks, is how he lives. 

“I do think it puts you in a better place for living,” he says. “I can’t tell you if that’s going to shape the way I die but it certainly does shape the way I live.”

That way of living took root in his hometown of Winnipeg, at the University of Manitoba, where he trained, stayed and built a program of research with global impact.

In his White Coat address to UM’s Class of 2028, Chochinov noted that he has lectured at institutions like Harvard, Yale, Stanford, Oxford and Cambridge, and told the students that the education they’ll receive at UM is “second to none.”

Now, he says he’s in “this third act” of his career. 

“More and more I think of my work in terms of its ability to impact not just end-of-life care, but to impact the field of medicine,” he says.

Dignity Therapy is part of that shift. It has since been adapted in other settings where personhood can feel under assault, including mental illness, cognitive decline, incarceration and work with young people.

Beneath all of Chochinov’s work is a deceptively simple proposition: people don’t stop being people when they become patients. They want to be seen, recognized and understood beyond their illness. 

On the surface, it sounds obvious.

“Oftentimes people have said, ‘Harvey, it seems like what you’re selling us is old wine in a new bottle.” 

He says the bottle matters. By giving that old intuition a structure and evidence base, he’s helped turned it into something contemporary medicine can pick up and use.

In his office, there are photos from across his storied career.

He holds one up: a much younger Chochinov climbs into the car with Ellen and their mother.

All three are grinning as they squeeze in together for the ride.