Social Policy in Ontario

How Baby Boomers will change the way Canadians die

Posted on May 4, 2022 in Child & Family Debates

Source: TheStar.com — Authors: Alex McKeen

TheStar.com – News/Canada
April 30, 2022.   By Alex McKeen, Vancouver Bureau

Leading thinkers say we can approach death better

Things appeared to be going well with Thomas Hartle’s cancer treatment as he went into surgery to remove two tumours from his digestive tract.

It was to be his third surgery after two successful ones. Hopes were high.

But this time, in 2019, the doctor found not just two tumours, but 42 — too many to remove.

It was Stage 4 colon cancer, and there would be no cure.

That’s how Hartle, an IT technician from Saskatoon, found out he was going through a process we all have to face eventually but from which we instinctively turn away for most of our lives.

Hartle, in his early 50s, was dying.

He was aware that his cancer would — tomorrow or years from now — take him away from his family, the simple pleasures of talking, laughing, eating and everything else he enjoys and values.

“You go from thinking that everything is just fine to learning that, on any given afternoon, you could just die,” he says. “And, of course, when you have that in your head, any twinge of discomfort is giving you the feeling that’s just it, that’s the end.”

Death will come to us all, whether or not we have time to contemplate it as Hartle has.

But how we plan for our end is an evolving conversation — from high-profile national discussions on medical assistance in dying to the pandemic-underscored shortcomings of long-term care homes in this country. It’s a conversation that, for demographic reasons, may be more pressing than ever before.

Statistics Canada released a report this week that showed what one official called a “date with demographic destiny”: In the next 25 years, the number of Canadians over the age of 85 will triple.

How those Canadians — members of the Baby Boomer generation born between the end of the Second World War and 1964 — die will be one of the pressing issues of the next two and a half decades.

Leading thinkers say we can approach death better in Canada — and that the Boomers who have changed the culture of adolescence, work-life, parenting and grandparenting as they have grown older will be sure to leave their mark on the way we die, too.

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A better approach to dying is something Hartle needed in order to get out of his own suffering mind.

A self-described optimist, Hartle says he found the existential dread that followed his terminal diagnosis completely foreign and overwhelming. It was as though the fact of dying — its all-encompassing and inescapable nature — was depriving him of the living he had left to do.

“The level of noise inside of my head really prevented me from thinking about anything else,” he says. “For me, it wasn’t so much the idea of dying itself. It was more so, for me, the idea that I wouldn’t be here for my family. It was really a painful thought for me.”

Hartle was desperate to quiet the noise, and found a way of doing it that worked for him.

Having used cannabis to treat pain before, he was interested in novel treatments, and discovered some research about psilocybin-assisted therapy helping with the type of intense anxiety that can afflict dying patients.

The therapy — which involves counselling sessions before and after a guided session with psilocybin, the non-addictive drug found in “magic mushrooms” — helped him confront his anxieties, he says. It hasn’t made his concerns about death go away, but Hartle says that for six months after each treatment (he’s had four), thoughts that had been unspeakable and unthinkable to him became more approachable, and not so overwhelming.

“When looking at my own issues, I was able to examine what was going on for me in a way that did not have this hot-potato pain with it,” he says. “It really gave me the ability to connect the awful things I was avoiding to a sense of: I can handle this; I’m OK with this. You get rid of the noise in your head, and you suddenly have room for other things.”

He calls his treatment “medical assistance in suffering” and put it in this way: “I tell people it’s the difference between actively living and actively dying. … While I still have the same destination, the journey from here to there does not have to suck.”

Hartle says he would like to see the type of treatment he received become more widely available. In April, he became one of just five terminally ill patients to gain access to a legal supply of the drug. Terminally ill patients can also apply to get an exemption from the Controlled Drug and Substances Act.

At the same time, he recognizes that there are other paths to a better death, that may work to alleviate the (often mental) suffering.

Part of the conversation around the future of death may involve broadening access to novel drug treatments, and another part of the conversation will be around broadening access to the suite of therapies and treatments provided in palliative care that is available to many, but not all, cancer patients in Canada.

In fact, alleviating the suffering, and not just the physical pain, associated with death is central to the field of palliative care, the branch of health care that combines medicine, social work and different kinds of therapy to try to improve a person’s quality of life as much as possible, instead of trying to cure their illnesses.

Wayne Sumner, a professor emeritus of philosophy at the University of Toronto who has long taught courses on death and dying, says he loves Hartle’s phrase “medical assistance in suffering.”

“That’s what I understand palliative and hospice care to be trying to deliver. Part of that is medical, but a lot of it isn’t. A lot of it is delivered not by doctors but by social workers, therapists,” Sumner says. “A lot of end-of-life suffering isn’t physical.”

Sumner, who wrote a book on Medical Assistance in Dying (MAID) and has been an advocate for its legalization, says it’s a good thing the practice is becoming more normalized in Canada as an option, but that a true national conversation about how we want to die needs to be broader than the question of whether people should be able to ask for their doctor’s help to end their lives.

“Only a small minority of people are ever going to have an assisted death. … I think there’s a role for co-ordinated government effort to start a national conversation about how people want to die,” he says.

Expanding access not only to doctors and nurses but also to counsellors, social workers and grief experts, as well as special management of medications in the home environment where more people want to die is key, Sumner says.

He says he thinks social forces are well positioned to make that national conversation happen.

The Baby Boomer generation, of which Sumner considers himself a part at age 80, has expectations about how their deaths should look.

“One thing that members of my generation have taken for granted is that they’re in the driver’s seat as far as their lives are concerned,” he says. “I want to hope that they can drive a lot of this change as well.”

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What people prefer when it comes to death is already fairly well known. Most people prefer to die at home, and can be helped by one of a variety of services offered by palliative care providers, for which there are limited resources.

One 2020 survey from the National Institute on Ageing found that almost 100 per cent of people wanted to live independently and in their own homes for as long as possible. A study from the Canadian Frailty Network published in 2013 showed three quarters of people in one hospital says they would rather die at home.

What is actually happening, according to the Canadian Frailty Network study, is that 60 per cent of Canadians die in hospitals, and less than 50 per cent of people who die receive palliative care.

Marney Thompson, director of bereavement services at Victoria Hospice in British Columbia, has worked in palliative care for 30 years in a variety of counselling and grief-support roles. She says that in her time, the need palliative care most often tries to fill for dying patients is providing what they call an “authentic death.”

“Ideally, that means the way the death happens, as much as possible, is a reflection of the kind of needs, wishes, wants, personality, life experience of the person who’s dying,” she says.

“And so as a longtime palliative-care person from the counselling side, when I’m sitting with patients and families, I’m trying to kind of tease out what it is that matters most to people.”

To some people, that may mean fighting their illness as long and as hard as possible. To others, it might mean ending treatment earlier and doing some meaningful activities with the people they love while they are still able. For most, Thompson says, she sees that people who are dying have some things they wish to resolve about their lives, for which a counsellor can be helpful.

A model of what matters most to dying patients from Ira Byock, a leading American advocate for palliative care, says that four phrases tend to capture the things dying people most want to say and do before they die: “I love you;” “thank you;” “I forgive you;” and “please forgive me.”

These are steps that palliative-care providers such as Thompson are practised at providing, and could be replicated so that more people can have access.

Thompson says that when the conversation began in Canada around legalizing MAID, she wondered what would happen to such important conversations for those who chose an assisted death.

“I felt a little worried about what was going to happen to all that important stuff that people go through as they know that they’re dying, both for the patient and family members,” she says.

“You know: what happens when death is, instead of a process over weeks or months or for some people years and instead it’s Sunday at 2 p.m.?”

Ultimately, Thompson says, she doesn’t think those meaningful parts of dying are skipped over in the assisted deaths she’s seen. They might be accelerated, or even intentionally scheduled and ritualized, such as when a dying person knows it’s their last time having a certain meal or going to a certain park, and can mark that occasion.

There were 7,383 medically assisted deaths in Canada in 2020, representing 2.4 per cent of all deaths.

One thing Thompson does worry about is whether the limited availability of palliative care in Canada — especially at home where people mostly prefer to die — could cause people to choose an assisted death for lack of other options.

That’s something that concerns Dr. Stefanie Green, president of the Canadian Association of MAID Assessors and Providers, too.

One of the important steps she has to take when assessing whether a patient qualifies for a medically assisted death is asking whether the patient has been able to find and access other ways to manage their suffering. She says she believes more palliative care is needed, especially to address conditions other than cancer.

“There is a rigorous process in place, and part of my job is to explore what they say they want,” Green says. “What is it that’s actually causing their suffering? Because maybe there’s resources that I can offer them to reduce their suffering and change that.”

Some of the factors contributing to suffering include fear of death, of losing control, and of being seen by loved-ones in a declining state, as well as other factors, such as financial burdens and grief from the loss of a loved-one. These are areas, Green says, that are “intimate” and can be hard to talk about, but are essential to do because problem-solving for them can dramatically change a person’s outlook at the end of their life.

Most often, Green says, patients who come to her looking for an assisted death say something similar.

“At some point (they) will say to me: It’s not that I want to die; it’s that I know my life is ending,” she says. “And then it’s almost immediately followed by: And I would like to have some control over the end.”

For those who do choose an assisted death, she says she thinks her role as the doctor helping the patient is an important one — a kind of bookend to the doctor care you hopefully receive when you are born into this world. Green believes the attitude of wanting control over how we die will be even more common among Baby Boomers as they approach their own deaths.

“When they became parents, they changed how we parent children. They changed what adolescence looks like in North America. They changed how we protest and how we run our democracy. They changed how to parent, they changed how we do or don’t stay married,” she says, “They’ve changed every stage of life they’ve touched. That’s just the truth. And there’s no doubt in my mind, that they will continue it through the next stage of their lives, which is the chapter which is the end of their life, and they will absolutely change how we die.”

Green believes that death planning — not just writing wills but talking with family members about where we want to die, and the kinds of treatment we want and don’t want to receive, will and should become more common in the coming years, driven by aging Baby Boomers.

It’s something that Sumner, the philosopher, says he has come to think about a lot more now that he’s 80 years old.

“All the way through, I was dealing with these issues as a philosopher. That’s what I did for a living. I turned 80 last year and suddenly the issues didn’t seem so theoretical anymore,” he says. “It’s not as though it has changed my views, but I’m now much more alive to how deeply personal it is. It’s not a classroom issue for me anymore or even a book issue for me anymore.”

Sumner says he’s in good health, and doesn’t think his death is on any immediate horizon, but that he wants, for himself and his family and his family doctor, to be able to talk about his goals and desires around death: to have a plan, as Green put it.

It’s what Hartle, in the years since his terminal diagnosis, has gotten a lot of comfort from: confronting his future, so he can live in the present.

“I’ve had a lot of opportunities to speak with people like myself who are palliative and, boy — it’s a lot of people. Almost everybody that I’ve talked to has a fear of what’s next, that there’s no way of knowing what’s next,” he says.

“In between now and then, I have the potential to enjoy so much more of the life I have left.”

https://www.thestar.com/news/canada/2022/04/30/how-baby-boomers-will-change-the-way-canadians-die.html?source=newsletter&utm_content=a10&utm_source=ts_nl&utm_medium=email&utm_email=0C810E7AE4E7C3CEB3816076F6F9881B&utm_campaign=reco_121517

Tags: disabilities, Health, mental Health, standard of living

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