August 16, 2017

cloudy

Winnipeg
23° C, Partly cloudy

Full Forecast

Prognosis: compassion

Health-care professionals work as a unit to support, advise and, ultimately, end the lives of terminally ill Manitobans who opt for assisted death

You’re in the intensive care unit to withdraw ventilatory support. The dying person is most likely unconscious.

You lean in, take the tube from their throat and quiet the machine forcing air in and out of their lungs. You wait.

Dr. Kim Wiebe was chosen to lead Manitoba’s medical assistance in dying team in part due to her extensive experience in critical care. (Phil Hossack / Winnipeg Free Press)</p>

Dr. Kim Wiebe was chosen to lead Manitoba’s medical assistance in dying team in part due to her extensive experience in critical care. (Phil Hossack / Winnipeg Free Press)

That moment is the closest anything in Dr. Kim Wiebe’s medical career has come to preparing her for what she does now: help people who want to die, die. And yet still, she says softly, there’s no real comparison.

In one room, the outcome is uncertain: you unhook the machine and the person lives or doesn’t. You don’t get to choose. In the other, she says, death is foreseeable, a deliberate act.

Immediately before Wiebe administers the first of three medications that will put a person to sleep and stop their heart, she asks — again — if they are absolutely certain they are ready to die. They say "yes," and she administers the drugs.

"The patient is very much in control," she says. For the doctor there’s rare certainty: "You know that the person’s going to die."

Their eyes close, their heart stops.

● ● ●

By the time the Supreme Court struck down Canada’s ban on physician-assisted dying on Feb. 6, 2015, Wiebe had been following the debate with only peripheral interest.

As an intensive care unit doctor in Winnipeg, she’d seen plenty of end-of-life care. She had such an affinity for the work, she’d gone back to do a second medical residency in palliative care. She followed the news and thought assisted dying "was an important option for people to have," but didn’t give it much more attention.

Assisted dying by the numbers

Click to Expand

Note that each province reports, tracks and releases data pertaining to assisted dying slightly differently.

British Columbia: 338 assisted deaths as of March 31. Eight occurred before federal legislation went into effect on June 17, 2016.

Alberta: 143 assisted deaths as of May 29. Six occurred before federal legislation went into effect on June 17, 2016.

Saskatchewan: 21 assisted deaths as of March 31.

Manitoba: 46 assisted deaths as of June 1.

Ontario: More than 400 assisted deaths as of May 1.

Quebec: Assisted-death legislation was implemented before the federal government acted, giving Quebecers access to the service beginning in December 2015. Since then, there have been at least 450 assisted deaths.

New Brunswick: 17 assisted deaths as of March 31; at that time there had been 31 official written requests, none of which had been rejected.

Nova Scotia: 31 assisted deaths as of March 31; 67 requests.

Prince Edward Island: Zero assisted deaths as of April 27. At that time, Health PEI noted, “there has been at least one, but fewer than five, requests.”

Newfoundland: Nine assisted deaths as of April 28; 13 requests. The numbers could be higher; reporting on assisted dying in the province is currently voluntary.

Yukon: Statistical information not available due to privacy concerns.

Northwest Territories: Statistical information not available due to privacy concerns.

Nunavut: Statistical information not available due to privacy concerns.

She wouldn’t until later that year, when the Winnipeg Regional Health Authority’s chief medical officer, Dr. Brock Wright, asked her to serve as the ICU representative on an advisory panel that would help shape Manitobans’ access to medical assistance in dying.

In its ruling, the Supreme Court had suspended its decision for one year to allow governments time to respond. Although the suspension was extended until June 6 last year, Manitoba — like all the other provinces and territories — needed a plan. Especially since, in the interim, people seeking relief through death could apply via the courts.

"That was the urgency," Wright says. It was January 2016 and the question was, "How do we quickly develop a capacity in Manitoba to provide medical assistance in dying if as early as February we were directed to by a court order?"

Wright, who was chairing the provincial medical leadership council at the time, gathered the group at the government’s request. He was given a few names of senior officials from the regional health authorities, but he reached out as well to the provincial medical colleges. He knew the involvement of the colleges of nurses, physicians and pharmacists would be crucial to creating a comprehensive program.

At that first meeting, Wright had a thought. What if the advisory panel formed a clinical team? What if they actually helped people die?

There was "anxiety around the whole idea of medical assistance in dying and what are we allowed to do and what aren’t we," he says. Creating a team, he felt, would set the standard, create provincial experts in the field.

It would prove a unique approach. No other province or territory would rely on one travelling team to offer the service.

Still, it wasn’t what Wiebe had gone to the meeting expecting.

"It’s one thing to support the right," she says, "but it’s another to actually, actively help somebody."

Everyone in that room took time to think before saying yes, Wiebe says. She thinks almost all of them came to the same conclusion: "(It) was here, it was going to happen regardless, and if it was going to happen we wanted to do it to the best level."

At the start, the team was kept fairly small: three doctors, two nurses, two social workers and two pharmacists. Wright picked Wiebe to lead it. She was kind, caring and organized, he says, with extensive critical care experience and the kind of leadership tenacity he felt would propel the team forward.

They had their first request for assisted dying at their second meeting. It was February 2016. Since then, the demand has only grown, and the team with it.

But the team has kept a fairly low profile over the last year. Wright says they didn’t know how the public would react and were worried about people’s safety.

Slowly, he says, Wiebe has become more comfortable going public with her own role as team lead. Still, it has always been Wright speaking to the media about assisted dying in Manitoba.

This is Wiebe’s first interview. It’s her first time speaking about the team, its dynamics and how challenging, yet fulfilling, it is to help someone who wants to die.

● ● ●

Every so often, Cheri Frazer teaches advanced care planning in the community classroom at Winnipeg’s McNally Robinson bookshop.

What do you want to happen if you get sick or diagnosed with a terminal illness, if you’re close to dying? She’ll help people sketch out a health directive and sometimes, after the class, they’ll approach her with a favour.

Conversations around faith

Click to Expand

At least six faith-based health-care institutions across the province have made it clear they won’t allow assisted dying on their premises. But Winnipeg Regional Health Authority chief medical officer Dr. Brock Wright says conversations about what they will allow are ongoing.

Wright says discussions are underway to determine which, if any, of the required steps patients must go through — inquiry, medical-chart review, two independent assessments, a 10-day reflection period — before their assisted death request can be approved, could in faith-based facilities.

The question, he says, is during “that assessment period that would involve our team, does the faith-based institution or that faith look at that as contributing towards medical assistance in dying?”

In other words, do the institutions see the process during which a patient is ruled admissible or inadmissible for the service as “being complicit in ending a person’s life”?

So far, Wright says, the discussions “have been very respectful.”

Still, the organization Dying with Dignity is adamant they shouldn’t even be necessary.

“I think if an institution receives public funding then it doesn’t have the right to limit a Canadian’s access to legal services,” says Cheri Frazer, “an institution doesn’t have values.”

That discussion is likely only going to get more heated in the near future considering the provincial government introduced Bill 34, the Medical Assistance in Dying (Protection for Health Professionals and Others) Act, last month.

While Health Minister Kelvin Goertzen said it would ensure medical professionals are not disciplined for their beliefs, Dying with Dignity sees such bills as a “Trojan horse to try to suppress assisted-dying access.”

In an email, a spokesman for the non-profit said many of the groups supporting “conscience rights” protected in Bill 34 and others are the same groups waging legal battles against patients’ right to referral for assisted dying.

“It’s not that we don’t think that conscience rights are legitimate, or that these groups aren’t sincere in their work to have those rights protected,” he wrote, “It’s just that we don’t believe their objectives stop there.”

Late last year, several Manitoba hospitals made it clear they had no intention of offering the service, including St. Boniface General Hospital and other medical care facilities under the Catholic Health Corp. of Manitoba umbrella, including St. Joseph’s residence in northwest Winnipeg, Ste. Rose General Hospital near Dauphin, and Winnipegosis and District Health Centre.

Mennonite-affiliated Concordia Hospital and Archdiocese of Winnipeg-affiliated Misericordia Health Centre also said they would not provide assisted dying. Concordia even took out an ad outlining its position.

They want to die or, at least, to write up a directive that stipulates no intervention if they begin to lose control of automatic bodily functions because of a disease like Multiple System Atrophy or if they start to forget their family and friends as dementia ravages their brain.

But — and here is where they often stumble — their family either doesn’t agree or gets so upset at the mere mention of such a directive that the conversation stalls. They ask Frazer, a co-ordinator with Winnipeg’s Dying with Dignity chapter, would she help them talk to their family?

Frazer has found one explanation that resonates most.

Imagine you’re called to the hospital, she tells them, and there’s been a horrible accident.

"The way that we express love is by saying ‘do everything you can,’ but that isn’t necessarily how the patient wants to be treated," she says. "If the patient’s quality of life has already started to erode and they really don’t want to be lingering, they don’t want that intervention, then it’s a cruelty rather than an expression of love."

Frazer has been a key element in Dying with Dignity’s Winnipeg chapter for several years. The non-profit pushed nationally to decriminalize physician-assisted dying and now works to ensure equitable access.

Frazer interacts often with Manitoba’s team, either by helping connect people or serving as a witness when they sign their name to the form stipulating, unequivocally, they know they are asking to die and they want to end their life.

"Sometimes" it takes a toll, she admits, "but then the practical kicks in and, for the most part, people are just so grateful that you’re there, that they have someone to help them."

But, no two deaths are the same.

The parameters are — a medical-chart review, a written request in front of two witnesses, two independent assessments, a legal form followed by a 10-day reflection period — but that’s where similarities end.

For Wiebe and her team to feel comfortable performing assisted dying, they have to almost become experts in another person’s unbearable pain. On average, they spend a month or so getting to know someone, although that time period lengthens if a person has an auspicious death date in mind.

A nurse will field the initial inquiry and review the person’s medical chart, making sure they meet the current federal requirements for medical assistance in dying:

  • they must be at least 18 years old;
  • they have to have an illness, disease or disability that is serious and incurable;
  • their suffering — physical or psychological — must be intolerable;
  • they must be in an advanced state of irreversible decline; and
  • their death must be reasonably foreseeable.

A doctor, a nurse and a social worker from the team will do the first assessment, Wiebe says, while a different doctor, nurse and social worker will do the second.

Social workers have proven essential, she says, not just for the support they can provide the person who wants to die but also the support they can offer to close family and friends throughout the process and after the death.

Their presence is part of what makes Manitoba’s team so unique. While other provinces have co-ordination services — "matchmaking" is how Wiebe describes it — to connect a person who wants to die with someone who will help them, the Manitoba team comes equipped. There’s no need to provide phone numbers and introductions to other willing professionals; everyone is on hand.

Dr. Brock Wright, Winnipeg Regional Health Authority’s chief medical officer, believes creating a team will lead to developing provincial experts in the field. (Ruth Bonneville / Winnipeg Free Press)</p>

Dr. Brock Wright, Winnipeg Regional Health Authority’s chief medical officer, believes creating a team will lead to developing provincial experts in the field. (Ruth Bonneville / Winnipeg Free Press)

Many of the Manitoba requests come from people already enrolled in some form of palliative care, Wiebe says, so the in-person assessments are really an opportunity to see whether there is some way they can improve a person’s care.

Neither the doctor, nurse nor social worker present for the assessment will mince words. We ask, Wiebe says, "If we could change this about your situation, would it change your mind about assisted dying?"

The questions aren’t asked to force someone to live or, conversely, to encourage them to pursue a more immediate, controlled death. The team considers itself "neutral."

Members don’t advocate and they don’t critique; it’s just a service, albeit a very emotional one.

"The only way it feels right is to really identify with how they’re suffering," Wiebe says, and "because we connect with people, it’s sad when they die. You know it’s the right thing for them, but there’s still emotion there."

For that reason, and a few others, there have been numerous headlines declaring doctors across the country have asked to be removed from official lists of assisted-dying providers.

Wiebe has a possible explanation: it’s because they’re alone, doing it by themselves.

"I couldn’t imagine doing it solo," she says. "There’s concern and anxiety… I don’t think any of us could have done it without the team, without being part of a team."

• • •

One night each week, Wiebe’s team meets to talk about the people who’ve died.

There have been 46 people between June 17, 2016 — when federal legislation came into force — and June 1st, although the team currently has 22 active cases and 51 inquiries still to sort through.

In nearly a year, they’ve turned down 49 requests and seen 69 people die either before they could offer the service or because they chose to opt out.

Some people die in hospital, while other people die at home. It’s been a fairly even mix, Wiebe says.

As the number of requests grows, so too has the team’s ranks.

There are nine doctors — three are bilingual — mostly family physicians, although one works in anesthesia and Wiebe works in critical care and palliative care. While six work in Winnipeg, three are in rural areas.

The team recently added a third nurse; two of them work part time, the other is full time.

There are four social workers and two pharmacists. There is also a speech language pathologist, hired when the need presented itself, and the team is working on adding an educational co-ordinator.

They meet and they talk, an informal, much-needed debrief.

At the beginning, Wiebe says, everyone felt like they were providing an important service. But the more they helped people die, the more their sense of whether it was fine that they felt fine about the deaths became fuzzy.

Twice, Wiebe says, outside psychologists have come in to help them. It was the first one, she says, that really helped her "recognize that it’s OK to feel OK about this work." The plan now is to have a psychologist come in every few months to consult with the team.

Only one person has stepped away so far, Wiebe says, but that had more to do with family commitments.

"Everybody on the team is very conscientiously participating," she says.

• • •

Sometimes Sherry Marginet will have a focal seizure in the kitchen of her Winnipeg home. She’ll switch off the stove and slide to the floor and wait for it to pass.

Her husband and two adult sons have become accustomed to these moments. She has epilepsy and the entire right half of her body was paralyzed during brain surgery when she was 11. She wears "fancy electronics" that shocks her right leg to help her walk. She’s being treated for depression.

"Little struggles" is how Marginet characterizes her circumstances. As the other co-ordinator at Dying with Dignity in Winnipeg, she’s well aware that people struggle with more extreme, more debilitating issues. But in the same breath, she knows, "this is the best I’m going to be."

Sherry Marginet, with Dying with Dignity’s Winnipeg branch, has epilepsy. She wants options when things get worse, for herself and for others. (Ruth Bonneville / Winnipeg Free Press)</p></p>

Sherry Marginet, with Dying with Dignity’s Winnipeg branch, has epilepsy. She wants options when things get worse, for herself and for others. (Ruth Bonneville / Winnipeg Free Press)

Marginet wants options when it gets worse, for herself and for others. She has an advanced health directive and her boys know: "no heroics."

It’s interesting, she notes, to see people so opposed to assisted dying completely change their mind when a loved one falls ill, when they’re suddenly desperate to ease someone’s suffering.

But even now, a year after the federal legislation went into effect, the process is mired in uncertainty, and stories about barriers to access persist.

Federally, the Council of Canadian Academies is currently undertaking reviews of assisted dying at the request of the government. In addition to doctors asking to be removed from registries, at Dying with Dignity, Marginet hears stories from people whose doctors refused to even provide a referral.

Even the Manitoba bill that would see protection for health-care professionals who don’t want to provide the service is inadequate, Marginet says.

And there are concerns about adequate protection for the people who want to provide it.

The uncertainty and hesitation around assisted dying is part of why Frazer and Marginet see the provincial assisted dying team as uniquely beneficial here in the Prairies. Parts of southern Manitoba — sometimes referred to as the Bible Belt — are deeply conservative and religious. Now, Marginet says, imagine a rural doctor whose practice is comprised largely of people vehemently opposed to assisted dying.

"If a doctor said, ‘yeah, I’ll do it,’ they could lose a good portion of their patient base," she says. "There’s stigma in small towns."

The assisted-dying challenge

Click to Expand

In late May, the British Columbia Civil Liberties Association announced it had added a new plaintiff to its fight against federal assisted dying legislation.

The BCCLA, whose landmark 2015 case forced the government to introduce legislation, has been waging another legal battle for nearly a year now challenging the constitutionality of the federal provision that to access assisted dying a person’s death must be “reasonably foreseeable.”

That leaves many people suffering intolerably in indefinite pain, the BCCLA argues. It added Robyn Moro, a 68-year-old grandmother diagnosed in retirement with Parkinson’s disease, to its challenge.

The BCCLA argues that under current federal legislation, Moro doesn’t qualify despite her desire to die.

“I have so much pain every day, and I know my Parkinson’s will only continue to get worse. I know what my future holds and I don’t want to endure it,” she’s quoted as saying in a release, “I want to be able to die peacefully, with my family by my side.”

Dr. Jeff Blackmer, the Canadian Medical Association’s vice-president of professionalism, says he doesn’t think rural doctors are concerned as much with losing their patients. If anything, he says, it’s more than likely the doctors share similar values with most of their patients.

"What I hear are doctors who say, ‘Look, I don’t want to do it because of my moral views and I have a lot of patients in my practice who hold those same moral views and it’s important to them to be with a doctor that feels the same way as they do.’"

That, coupled with anecdotal stories about physicians backing away from providing assisted dying, is part of why Blackmer thinks the Manitoba model "seems to be working well."

Each province, he notes, is trying to find a model that works based on its own population and geography. Most provinces have some form of a co-ordination service to connect patients with providers, while some larger cities and hospitals have their own teams.

Besides providing built-in support for providers of assisted dying, Blackmer says the team model has another key advantage: "It does really help with making sure that physicians’ conscience rights can be respected and, at the same time, making sure that access isn’t an issue."

And if the numbers are any indication, more Manitobans are seeking assisted death. The team has fielded roughly 200 inquiries in the last year, about half of them in recent months.

Doctors, nurses and social workers will continue being added to the team as necessary, Wright says. "We’ve had more referrals this year than we had last year, but where that will level off, I have no idea."

The requests, when they come, are diverse in origin. Wiebe meets people in palliative care, but is careful to note that assisted dying isn’t a subset of a specialty that tries to make dying as comfortable an experience as possible, even though death is foreseeable in both cases.

She’s met people on surgical wards, in gynecology and oncology. Assisted dying is somewhat amorphous.

"To me," Wiebe says, "assisted dying belongs nowhere and everywhere."

 

jane.gerster@freepress.mb.ca 

Twitter: @Jane_Gerster

Read more by Jane Gerster .

You can comment on most stories on winnipegfreepress.com. You can also agree or disagree with other comments. All you need to do is be a Winnipeg Free Press print or e-edition subscriber to join the conversation and give your feedback.

Have Your Say

New to commenting? Check out our Frequently Asked Questions.

Have Your Say

Comments are open to Winnipeg Free Press print or e-edition subscribers only. why?

Have Your Say

Comments are open to Winnipeg Free Press Subscribers only. why?

The Winnipeg Free Press does not necessarily endorse any of the views posted. By submitting your comment, you agree to our Terms and Conditions. These terms were revised effective January 2015.

Photo Store

Scroll down to load more

Top