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Deciding to die

Winnipeggers facing devastating, terminal diagnoses opt to end their lives with medical assistance. A Red River College journalism student chronicles their last days

Hey there, time traveller!
This article was published 29/3/2019 (435 days ago), so information in it may no longer be current.

Caitlyn Gowriluk is a graduating journalism student at Red River College. Over the past year, she’s been investigating the impact medically assisted death has had in Manitoba since the law came on the books in 2016. These stories take readers to hospital bedsides, doctors’ offices, family living rooms and kitchen tables to explore how the end-of-life option has affected people across the province.


Chapter 1

Appointment with death

Wednesday, April 25, 2018 Late in this afternoon on the fifth floor at the Seven Oaks General Hospital, a small group of doctors, nurses and a few family members gather around Adele Murphy’s hospital bed. When the moment arrives — when Murphy says she is ready to go, when there is really nothing left to say but goodbye — Dr. Kristin Heinrichs begins to administer the medications that will end Murphy’s life.

Heinrichs, one of nine physicians in Manitoba who specialize in medical assistance in dying, pushes the injections in through an IV: first a sedative, then an anesthetic, then a muscle relaxant. Most people die within about 10 minutes of the first injection, and many die before all the medications are administered.

"The way they explained it to me, the body just slowly shuts down," Murphy said a day earlier from her hospital bed. "And you just kind of go to sleep."

Adele Murphy spends time with her oldest daughter, Shannon Gavin, on April 24, 2018‚ a day before receiving a medically assisted death.

CAITLYN GOWRILUK / WINNIPEG FREE PRESS

Adele Murphy spends time with her oldest daughter, Shannon Gavin, on April 24, 2018‚ a day before receiving a medically assisted death.

A few weeks earlier, Murphy was diagnosed with terminal lung cancer. By that point, the disease had already spread through most of her body. Doctors estimated radiation treatments could give her three to six more months to live, but that would mean she would spend that time in and out of hospital rooms.

"That’s not life," Murphy said. "I don’t want to live as a machine."

So, as an increasing number of people across Manitoba are doing, Murphy opted instead for a medically assisted death, where she could choose the day she would die, with the help of a team of medical professionals.

Murphy’s family — daughters Shannon and Karen, and Karen’s husband Todd — stand close to her, flanked by a nurse and a social worker from the provincial MAID team that oversees every assisted death in Manitoba. A few ward nurses from the hospital are also nearby, invited by Murphy to sit in on her last moments.

As the medications flow into her bloodstream, Murphy lies in bed, soft eyes looking up at her daughters and then closing for the last time. Within a few minutes, she lets out one final breath and, moments later, the 78-year-old’s heart stops beating.


In February 2015, the Supreme Court of Canada unanimously found the criminal laws prohibiting assisted dying limited Canadians’ rights to life, liberty and security of the person in a way that could not be justified under the Charter of Rights and Freedoms. The court’s decision concluded a person’s response to a "grievous and irremediable" condition is critical to their dignity and autonomy, and its ruling was delayed by one year to give Parliament enough time to draft a new law to replace the one that had been deemed unconstitutional.

In June 2016, the House of Commons passed Bill C-14, making medical assistance in dying a possibility for terminally ill Canadians.

The Supreme Court of Canada is being asked to hear an appeal seeking a faster trial on the constitutionality of Canada’s law on medical assistance in dying.</p>

SEAN KILPATRICK / THE CANADIAN PRESS

The Supreme Court of Canada is being asked to hear an appeal seeking a faster trial on the constitutionality of Canada’s law on medical assistance in dying.

In Manitoba, the courts had already allowed some patients to receive MAID before the new law was passed. In March 2016, the Manitoba Court of Queen’s Bench granted an exemption, permitting a medical team to assist in ending the life of a patient who wanted to die. Two months later, the court granted an exemption to a Winnipeg woman living with multiple sclerosis, allowing her to access MAID before Bill C-14 was signed into law.

Since then, more than 400 Manitobans have opted for a medically assisted death.

Thursday, April 5, 2018 Murphy’s phone rings, again and again, the sound echoing through her quiet house. No one answers.

After falling in the morning, Murphy lies immobile on the kitchen floor of the Westwood home where she lives by herself. Her daughters moved out years ago.

The phone rings again. It’s her youngest, Karen Murphy Ito, trying again to reach her mother. She leaves another message on the answering machine, saying she would be stopping by to check in after work if she still doesn’t hear from her. Murphy can’t help but yell back at her daughter’s voice on the machine, though she knows no one can hear her.

After about 11 hours, Murphy’s daughter arrives to find her, bruised, cold and unable to move. She calls an ambulance and they arrive at the Seven Oaks emergency room at about 8 p.m.

Adele Murphy (centre), with her daughters Shannon Gavin (left) and Karen Murphy Ito in 1987.

SUPPLIED

Adele Murphy (centre), with her daughters Shannon Gavin (left) and Karen Murphy Ito in 1987.

Monday, April 9, 2018 After three days of tests — including an X-ray that showed a mass on her lung and an MRI that suggested the disease had spread beyond — Murphy receives a diagnosis: terminal, non-operable cancer. The next day, a bone scan reveals just how far the disease had progressed.

"It lit up like a Christmas tree. There was so much cancer," says Murphy’s oldest, Shannon Gavin, who had arrived in Winnipeg from Vancouver earlier this day. "(The doctor) told us right then… she would be surprised if there would be a possibility of remission."

As Murphy weighs her treatment options, the debate surrounding medically assisted dying that she had followed so passionately in the news over the past few years suddenly becomes more intense, more personal.

Murphy asks whether she will be able to access the procedure at Seven Oaks. A few days later, a doctor puts in the call to the MAID team.

These will be the last two weeks of Murphy’s life.

SUPPLIED</p><p>Adele Murphy (left) with her daughter Karen Murphy Ito and her husband Todd (and their dog Kira) in 2011.</p>

SUPPLIED

Adele Murphy (left) with her daughter Karen Murphy Ito and her husband Todd (and their dog Kira) in 2011.

Saturday, April 14, 2018 Murphy holds out her left hand, trying to help decipher the characters on the wrinkled, faded hospital bracelet wrapped around her wrist. Cheri Frazer and Sherry Lyn Marginet, two volunteers from the end-of-life advocacy group Dying With Dignity, arrive at Seven Oaks to witness Murphy signing her application for an assisted death, and they need to confirm her identity on the bracelet before they sign the forms.

Federal law requires that patients have two independent witnesses sign their application. There are strict criteria for witness qualifications that, essentially, rule out family members, doctors and most people an applicant regularly interacts with. To help fill the gap, Dying With Dignity runs an independent witness program that trains volunteers such as Frazer and Marginet.

The meetings with witnesses are quick — usually about "30 minutes of driving for 10 minutes of signing," says Frazer, who co-founded the organization’s Winnipeg chapter. Barely 10 minutes after arriving, she and Marginet are on their way out, leaving the family to reminisce and tell stories around Murphy’s hospital bed.

Medically assisted dying is still often a controversial topic, even in families dealing with it first-hand, Marginet says. But this isn’t the case in Murphy’s family.

"It was quite nice to see that they’re planning on spending lots of time with mom, and catching up on the last things," she says. "They’re savouring their last days together."

Adele Murphy

SUPPLIED

Adele Murphy

When the federal law prohibiting medically assisted death was struck down by the Supreme Court of Canada in 2015, concerns about whether there would be safeguards to protect vulnerable people from abuse and error within budding legislation rose to the forefront of the national conversation.

On one side of the debate, the court decision read, stands the "autonomy and dignity of a competent adult who seeks death as a response to a grievous and irremediable medical condition." On the other, the "sanctity of life and the need to protect the vulnerable."

The legislators’ compromise landed somewhere in between these opposing poles, and one year later, medical assistance in dying became a legal option for Canadians who meet a strict set of criteria. Despite their purpose to protect the vulnerable, Marginet says, some of the rules make it more difficult for people, at the most vulnerable time of their lives, to access MAID.

In addition to the independent witness requirement, applicants must wait 10 days after submitting their written application before they become eligible for the procedure, which has consequences ranging from inconvenience to ineligibility if the patient loses the capacity to consent, she says.

"This is something that has to be available to people no matter what, and hopefully with a little less restriction in the future," she says. "But we will work within what we have right now."

The waiting period complicates Murphy’s last days with her daughters.

"It’s a little odd to be waiting around to die, and I think my mother seemed to have more difficulty in the last few days in sleeping," says Murphy Ito.

"As much as she was at peace with it and understood and was glad that this was an option available to her, I think it plagued her mind a little bit."

Wednesday, April 18, 2018 Two days after Murphy’s first consultation with a group from the provincial MAID team, Heinrichs, along with a nurse and a social worker from the team, arrive at Seven Oaks to conduct Murphy’s last eligibility assessment.

Adele Murphy

SUPPLIED

Adele Murphy

The law requires that applicants meet with two separate physician-led teams for interviews to see if they meet the necessary criteria — including that they are at least 18 years old, mentally competent and able to give informed consent, and that they are not making the request as a result of outside pressure or influence — to access an assisted death.

But the interviews are not strictly clinical. They also help doctors get to know the people they’re working with — a crucial component of the process, says Heinrichs, who started working with the team in October 2016.

"You’re going to be present with them at a very significant moment of their life," she says. "You feel kind of connected to them…. We often hug patients and their families after one meeting."

In Murphy’s case, that means hearing about everything from the beginning to the very end of a storied and, by Gavin’s account, often tough life.

They hear how Murphy grew up on a farm in Saskatchewan, moved to Calgary and then Ottawa, before finally settling in Winnipeg and working at Canada Post for 23 years before retiring. They hear how she developed a passion for everything from cooking and gardening to reading the news and writing to her representatives about issues she felt were important. They hear how, when her marriage broke up, she raised two young daughters, instilling in them the values that got her through her lowest points.

"She was fiercely independent," says Gavin, a slight tremble in her voice. "When my dad left, she really taught us about independence and looking after ourselves."

After both of Murphy’s interviews with members of the MAID team are complete, each group agrees she meets the necessary criteria to qualify. The appointment for the final step in her application is scheduled for the following Wednesday.

Tuesday, April 24, 2018 As Murphy’s last day draws closer, the nerves that had been stewing in her family for the last few weeks begin to bubble up to the surface.

Even before MAID became legal, Murphy had been vocal about her support for the procedure; it was a topic on which her daughters formed opinions years ago, Gavin says. But now that their own mother’s appointment is only hours away, they face a sense of uncertainty.

Adele as a young woman.

SUPPLIED

Adele as a young woman.

It was the right decision — their mother is dying, and without medical assistance, her death could become an awful, drawn-out process — but that doesn’t make the burden of knowing exactly when she will die any easier to carry.

"You just don’t know how you’re going to feel," says Gavin, before turning to speak to her mother from the edge of her hospital bed. "You said you’re not scared, though?"

Murphy pauses, considering the question, then slowly shakes her head.

"No," she says. "I’m at peace."

Wednesday, April 25, 2018 Everything Murphy’s daughters do this day is done with their mother in mind.

They arrive at the hospital in the morning with a smorgasbord of her favourite foods – perogies, cabbage rolls, ribs, caesar salad, seafood from Red Lobster — and a lifetime of her favourite memories. It’s an emotional day, but their mother has never been one to dwell on the negative.

"My mom’s someone that liked people to have a good time," says Gavin. "She wouldn’t want people crying too much."


When she’s gone, Murphy’s daughters stay true to her wishes. They know their mother wanted people to speak more openly about assisted dying, so they talk about her death. They know she didn’t want people to mourn, so they don’t hold a service.

And while they are still coping with losing her so quickly, they know that because she was able to choose when she was ready for her life to end, their mother’s death was marked with the same brazen independence as her life.

 

Chapter 2

Not wanting to die, not able to live

What happens if someone who lives with a disability and a terminal illness applies for an assisted death, but does it for the wrong reason; not because they truly want to die, but because they don’t have access to support services that allow them to live a full life?

What if their doctor, through insensitivity or bias, influences them to make this decision? Disability advocate and educator Catherine Frazee says without an adequate system to track and study MAID requests, these are the kinds of things that could fall through the cracks.

Last summer, the federal government published rules for monitoring how assisted dying is working in Canada — consulting practitioners, pharmacists, research groups and advocates in the process. The new rules aim to strike a balance: collect enough information to effectively monitor the procedure, but not make the reporting process so burdensome that practitioners decide they don't want to be a part of it.

The regulations went into effect in November 2018, requiring MAID providers to report on several factors, including whether social workers were consulted as part of an application, a description of the patient’s suffering and whether the patient received other services, such as palliative care or disability support.

As a longtime educator who currently serves as a professor of distinction in the disability studies program at Ryerson University, Frazee is familiar with the history of disability rights in Canada. And, as someone who lives with a progressive neuromuscular condition, she is intimately acquainted with the realities of living with a disability.

Catherine Frazee, professor emerita in the School for Disability Studies at Ryerson University, waits to testify at an inquiry in Halifax last summer. The Nova Scotia human rights board of inquiry is dealing with persons with disabilities and their attempts to move out of institutions and into small homes.

ANDREW VAUGHAN / THE CANADIAN PRESS FILES

Catherine Frazee, professor emerita in the School for Disability Studies at Ryerson University, waits to testify at an inquiry in Halifax last summer. The Nova Scotia human rights board of inquiry is dealing with persons with disabilities and their attempts to move out of institutions and into small homes.

Frazee has lived with Type 2 spinal muscular atrophy all her life. She has limited movement in just a few of her fingers and relies on 24-hour personal assistance. She uses a feeding tube to help her swallow and a ventilator to help her breathe. Because her disability has been increasingly limiting her respiratory function — making it difficult for her to speak for long periods — interviews with her were conducted by email.

For her, the new regulations raise more questions than they answer. With monitoring meant to take no longer than 10 minutes per patient — as the new rules explicitly outline — how can the federal government collect data that is anything more than superficial? How can Canadians really get an idea of who is applying for MAID across the country and what their reasons are?

The monitoring system attempts to collect data on applicants living with disabilities, including a computer-based drop-down menu to indicate whether the patient required and received disability support services; if they did, for how long, and if not, whether they had any access to such services. The answers to these questions are contingent on the MAID provider having the necessary information.

For example, if a person living with a disability who receives two hours of support services per day qualifies for and receives MAID, their provider would include in the report that the patient received disability support services and, possibly, how long they received them. But without more detail than this, Frazee said this approach fails to consider the nuances that come with disability, including determining the adequacy of the services for the patient’s needs.

"If a home-care worker comes every morning for two hours to bathe and dress a patient and feed them breakfast, is that person forced to spend their day in bed, because there will be no assistance available until the following morning?" Frazee asked.

"Then we have a person whose life is reduced to sitting in bed wearing incontinence protection and spending their time with a TV remote, perhaps a telephone and some cold snacks arranged on a tray."

Frazee said it’s crucial to keep track of all the factors — including medical and physical, but also psycho-social factors such as loneliness, anxiety and hopelessness — that impact a person’s decision to apply for assisted death. It’s particularly important to track these factors when applicants’ lives are also touched by complex social issues related to things such as disability, poverty and trauma, she said.

Frazee said disabled people are often made to feel their lives are burdensome and tragic, which is reflected in her own encounters with discrimination related to her disability. The subtle, yet pervasive, messages created by the stigma surrounding disability that say a disabled person’s life is not worth living could factor into a decision to apply for MAID, she said.

Canada needs a more adequate MAID monitoring system, Frazee said, but Canadians also need to change the way they think about disability.

"We need to hear more stories not only about why people have chosen to die but about how and why people have chosen to live," she said. "We need to challenge the presumption that human beings need to be robust and healthy and pain-free in order to flourish."

 

Chapter 3

Different reasons,one purpose

The chilly September day Doug McCutcheon signs his name on the piece of paper that says he is ready to die, the hospital room is quiet. The 84-year-old, a cancer patient, sits up, restless from spending a week in the small bed. His wife Pauline stands on one side, his son, Doug Banin, on the other, back up against the thin blue curtain separating them from another family. In McCutcheon’s lap sits a small book of word search puzzles, with a clip marking the page he’s working his way through as he waits for the last two people he needs to meet before being approved for a medically assisted death.

Down the hall, Cheri Frazer and Sherry Lyn Marginet step out of the elevator. They turn right, then right again, carefully following the directions they received from McCutcheon’s family until they get to room 322.

Doug McCutcheon leans back and takes a breath after completing the final step in his application for a medically assisted death.

CAITLYN GOWRILUK / WINNIPEG FREE PRESS

Doug McCutcheon leans back and takes a breath after completing the final step in his application for a medically assisted death.

"Hi," Frazer says as she walks across the threshold, looking across the room at the man in the far bed. "Are you Doug?"

Frazer and Marginet, although total strangers to McCutcheon and his kin, will play an essential role in ensuring he is able to exercise his will to die on his own terms.

In essence: they bear witness.


When medical assistance in dying became legal in Canada in 2016, a strict set of rules on access was implemented. Patients must complete two independent physician reviews to assess whether they qualify for the procedure. They must submit a written request confirming they understand and meet all eligibility criteria. And this must be signed in the presence of two independent witnesses.

These rules also extend to define who is independent enough to serve as a witness. The person cannot stand to benefit, materially or financially, from the patient’s death (anyone named in their will, for example) and they can’t be involved in the patient’s health care. For many applicants, this rules out most of the people in their lives they would feel comfortable asking to fill the role. 

Even though witnesses are not required to be present for the procedure, it can be incredibly uncomfortable to ask an acquaintance, a neighbour or a co-worker to be part of such an intimate moment, leaving many patients with few options.

Doug McCutcheon's final MAID application is signed.

CAITLYN GOWRILUK / WINNIPEG FREE PRESS

Doug McCutcheon's final MAID application is signed.

Since these rules came in with legalization three years ago, the end-of-life advocacy organization Dying With Dignity has created its independent witness program. In Manitoba, the group of trained volunteers has grown steadily, from just a few in the early days to more than 40 people willing to help. Some would-be witnesses find out about the initiative through word of mouth and decide to get involved. Other times, people reach out for training after a family member makes use of the service.

Since Manitoba’s MAID team received its first official application three years ago, the volunteer witnesses have been called to assist in nearly every other case. Of the 420 MAID applications submitted from legalization in 2016 to the end of 2018, 200 of them involved volunteer witnesses. That number grows just about every week.

Because two separate teams of doctors are required to decide if a patient is eligible for a medically assisted death, the task of the independent witness is, at least on the surface, a simple one: make sure the applicant understands what they’re asking for, that they know they can change their mind at any time — right up until the moment before they receive the life-ending combination of drugs — and that they aren’t being pressured by anyone to make the decision.

But independent witnesses such as Frazer and Marginet are separate from the provincial team that oversees assisted dying in Manitoba. And because these are volunteer positions, this job ends up falling not to medical professionals, but to average Manitobans who keep a stack of application forms in the trunk of their car, just in case they get the call. People who, in their spare time, will drive across the city (and, occasionally, outside of it) to play a small, yet crucial role in the life, and death, of a complete stranger.

On Oct. 13, Doug McCutcheon sits in his living room with friend Cheryl Helm and son Doug Banin.

CAITLYN GOWRILUK / WINNIPEG FREE PRESS

On Oct. 13, Doug McCutcheon sits in his living room with friend Cheryl Helm and son Doug Banin.


For many of the volunteers, the work is linked to their own life experiences. Marginet got involved with Dying With Dignity when the national debate surrounding assisted dying that was splashed across headlines a few years ago caught her attention. As someone who walks with a cane after developing epilepsy and becoming paralyzed on her right side as a child, the debate touched on a sentiment she had held for decades.

"I never wanted to get to the point that life was horrible and every day was just an event that you had to get through," she says. "So when this came up in the news, it was like, ‘Oh yeah, that’s something I’m interested in.’"

Since then, Marginet has served as a witness for about 20 MAID applications. And despite the nature of the work, despite the application’s central question — "Do you understand that the purpose and goal of requesting medical assistance in dying is to assist in bringing about your death?" — she said she tries not to carry the weight of each patient with her.

"I don’t take a lot of sorrow from it," she says. "This person needed this to be signed and witnessed, and I’m so glad I could do this."

Doug McCutcheon's living room wall is adorned with photos of his family, including several of his daughter Karen, who died of Hodgkin's lymphoma in 2015 at 60 years old.

CAITLYN GOWRILUK / WINNIPEG FREE PRESS

Doug McCutcheon's living room wall is adorned with photos of his family, including several of his daughter Karen, who died of Hodgkin's lymphoma in 2015 at 60 years old.

Still, there are cases she can’t shake, details that stand out, people whose faces stick in her memory longer than others. There was one home Marginet went to last winter with another volunteer witness, Bob Russell, that she still remembers so clearly: the sundogs in the sky above them, the life full of accolades now at its end, the patient’s whole family surrounding him, supportive of his choice to die but already mourning the man they were about to lose.

"That one was so much tougher," she says. "It really stuck with me for a long time, more so than any others that I have witnessed."

For Russell, a retired Winnipeg Police Service sergeant who worked in the forensic identification unit, facing death is no longer a daunting task. During his 35-year career, he often dealt with fatal accidents, homicides, suicides: deaths that happened in a flash, lives that ended in split-seconds.

Now, as a volunteer witness, the lives and deaths of the people he meets are entirely different. The often-urgent pace he once knew dictated by the slow burn of others’ terminal illness.

"Death, unfortunately, is your stock-in-trade when you’re a police officer," he says. "I’ve seen every other manner of death possible, more than I care to remember…. (But) this is kind of new ground for me."

On Oct. 18, Doug McCutcheon goes downstairs to the lobby of the seniors complex he lives in for a Thanksgiving dinner. Here, he catches up with friend Beatrice Wery.

CAITLYN GOWRILUK / WINNIPEG FREE PRESS

On Oct. 18, Doug McCutcheon goes downstairs to the lobby of the seniors complex he lives in for a Thanksgiving dinner. Here, he catches up with friend Beatrice Wery.

Others, still, come to the task from backgrounds that lend some insight to the job. Michael Stephens, a pharmacist who has worked in pain management for palliative-care patients, said his experience has, for him, dispelled a notion often held by opponents of assisted dying: that with comprehensive palliative-care, MAID isn’t necessary.

"Over my career, I’ve seen enough people in pain and discomfort and suffering," Stephens says. "And in some cases, the pain drugs do not necessarily relieve all of the pain. Some of it is not physical. Some of it’s mental. And it doesn’t matter how much you stone somebody — they’re still in discomfort."


Nearly half of the people who applied for a medically assisted death in Manitoba last year asked for, and got, help from volunteer witnesses who drove to nursing homes, hospitals and homes across Winnipeg, but also to smaller communities: Selkirk, Steinbach, Ste. Anne, Brandon, Carberry, Virden.

"It happens more often than you think," Stephens says. "And closer to home than you realize."

In a city such as Winnipeg, small yet intertwined, the coincidences seem inevitable. But it’s one thing about assisted dying the volunteers say many people don’t realize. Stephens, for example, once went to an applicant’s home a five-minute walk from his own. Frazer once saw two applicants who lived four doors down from each other, neither with any idea of their neighbour’s situation. On one occasion, the pair met with two separate applicants at opposite ends of the same hospital floor. Another time, Frazer organized witnesses for four people at the same hospital in a single day.

In his hospital bed, Doug McCutcheon keeps on two things: a watch given to him by his boss when he retired, and a ring given to him by a close friend.

CAITLYN GOWRILUK / WINNIPEG FREE PRESS

In his hospital bed, Doug McCutcheon keeps on two things: a watch given to him by his boss when he retired, and a ring given to him by a close friend.

The people applying for MAID, too, exist on a broad spectrum, Stephens said. They come from diverse ethnic backgrounds. Some are elderly, others are in their 30s. There are those who are highly educated — and some who never finished high school. The rich — and the poor.

As the number of applications for assisted death in Manitoba rises, so does the demand for the volunteer witnesses’ help. And while the number of volunteers has grown across the province — including some based in Brandon, Dauphin, Flin Flon, Lowe Farm, Morden, Neepawa, Pinawa, Russell and Steinbach — the growing need makes it hard for the relatively small group of volunteers to keep up.


For the longest time, Russell says he had no idea what to say to an applicant once the papers were signed. What do you tell a person with whom you just shared a fleeting, personal moment, and who, if everything goes according to their wishes, will die soon? The usual platitudes seemed insufficient. But after a while, he settled on something that felt right.

"At the end of the day, I just say, ‘It’s been a pleasure meeting you,’" he says. "Usually they thank us for doing it, and I just tell them that no thanks is required. We believe that people should have the right to do this."

 

Chapter 4

Seeking changes to law

When Dorothy Stephens’ mother died, she had already been gone for years.

Over the course of a decade, Alzheimer’s disease had slowly stripped away the things that had once defined the 90-year-old great-grandmother. She stopped recognizing her family, then stopped being able to feed herself. Every day, something else vanished inside, another part of her brain tangled and covered in plaques.

"It’s like the lights are on, but nobody’s home," Stephens says. "And then pretty soon the lights aren’t even on."

At 83 years old, Doug McCutcheon, with wife Pauline and son Doug Banin, was diagnosed with terminal cancer. Six months later, he applied for a medically assisted death.

CAITLYN GOWRILUK / WINNIPEG FREE PRESS

At 83 years old, Doug McCutcheon, with wife Pauline and son Doug Banin, was diagnosed with terminal cancer. Six months later, he applied for a medically assisted death.

Under current law, someone such as Stephens’ mother would not have qualified for medical assistance in dying. Even if an Alzheimer’s patient is approved for MAID, they can't have the procedure if they aren't able to communicate their consent on the day of their appointment.

It’s a gap in the MAID law that Stephens, who volunteers with the advocacy group Dying With Dignity, says is usually in the back of her mind. Having a parent who has Alzheimer’s does not necessarily mean a person will develop it, but research shows it increases their risk.

"It’s a horrible, horrible way to watch somebody die," Stephens says. "If it were me, I’d want to have assisted dying…. There’s nothing left, anyway."

Six months after MAID became legal in Canada in the summer of 2016, the federal Liberal government called on the non-profit Council of Canadian Academies to undertake independent reviews related to three complex types of MAID requests that are not currently permitted. The expert panel released its final reports last December. Keeping with its task, the panel did not draw conclusions or make recommendations about how the government should move forward. Instead, its reports gathered existing information and evidence that could help inform any potential legislative changes.

The panel, made up of researchers, academics and medical professionals, issued three reports in all. One focused directly on advance requests, an area that could change things for people such as Stephens’ mother before they lose the capacity to consent.

Dorothy Stephens looks through an album with photos of her mother, who died from complications of Alzheimer’s disease in 2014.

CAITLYN GOWRILUK / WINNIPEG FREE PRESS

Dorothy Stephens looks through an album with photos of her mother, who died from complications of Alzheimer’s disease in 2014.

It’s a topic that has made national headlines. In November, a Halifax woman named Audrey Parker died with medical assistance, but had the procedure months earlier than she wanted to; she was afraid of losing the capacity to consent. Now, Dying With Dignity is championing Audrey’s Amendment, a petition for the federal government to write into law a way for people to make advance requests. Former NDP MP Svend Robinson has also recently called on Justice Minister David Lametti to amend the legislation before October’s federal election, saying the current laws are unconstitutional.

On one hand, allowing advance requests could relieve anxiety for sick people who are nearing the end of their lives, but who are concerned about their capacity to make decisions, the panel said. On the other, removing the requirement for express consent immediately before receiving MAID raises the possibility that people might have their lives ended against their wishes.

In the meantime, families of patients who have been approved for MAID but who can no longer consent on the day of their appointment are left in limbo.

"Those are really hard ones," says Dr. Kristin Heinrichs, who has been part of Manitoba’s MAID team since October 2016. "I feel like we remember those ones because they’re kind of heartbreaking. The family is often really disappointed, too."

The CCA expert panel also examined other scenarios, such as mature minors (people as young as 16) requesting access to MAID. While the panel noted there have been no cases in Canadian courts where minors have applied, the current law requires applicants to be at least 18 years old to access the procedure.

Dorothy Stephens looks through an album with photos of her mother, who died from complications of Alzheimer's disease in 2014.

CAITLYN GOWRILUK / WINNIPEG FREE PRESS

Dorothy Stephens looks through an album with photos of her mother, who died from complications of Alzheimer's disease in 2014.

It also explored an even more complex request area: requests for MAID where mental illness is the sole underlying condition. Even within the panel, there was little consensus.

Some panel members believed expanding the laws to allow for this scenario may reduce mental-health stigma by demonstrating that people with mental illnesses can make health-care decisions for themselves, that their suffering is serious, that mental illness is not caused by character flaws or circumstances within their control and that their right to self-determination should be respected.

Others, however, said expanding the law to allow people with mental illness to access MAID may increase stigma, because it might perpetuate the belief that a life with mental illness is intolerable, not worth living and sometimes hopeless.

This debate mirrors the ones happening within families dealing with mental illness across the country. And for someone like Shawna Downey, whose sister Lisa took her own life in 2014, it hits close to home.

Application numbers rise

The number of MAID applications has increased steadily in Manitoba since the procedure became legal in Canada in June 2016:

• In 2016, 42 people submitted written applications for MAID. Of that number, 28 people died with medical assitance, two withdrew their requests and one was declined for not meeting criteria.

• In 2017 (the first full calendar year that MAID was legal in Canada), 142 people submitted applications for MAID. Of that number, 71 died with medical assistance, seven withdrew their requests and eight had their requests declined for not meeting criteria.

The number of MAID applications has increased steadily in Manitoba since the procedure became legal in Canada in June 2016:

• In 2016, 42 people submitted written applications for MAID. Of that number, 28 people died with medical assitance, two withdrew their requests and one was declined for not meeting criteria.

• In 2017 (the first full calendar year that MAID was legal in Canada), 142 people submitted applications for MAID. Of that number, 71 died with medical assistance, seven withdrew their requests and eight had their requests declined for not meeting criteria.

• In 2018, 236 people submitted applications for MAID. Of that number, 126 died with medical assistance, eight withdrew their requests and 20 were declined for not meeting criteria.

The written requests represent formal requests for MAID; others request information but choose not to apply and aren't counted in the provincial statistics, the Winnipeg Regional Health Authority said.

Approved and declined applications, combined with withdrawals, don't add up to the overall number of formal applications for various reasons, the WRHA said. They include pending cases, approved and scheduled procedures that have not been carried out and cases in which applicants died before a decision was made or approved procedure was done.

Source: Winnipeg Regional Health Authority

Who provides medical assistance in dying in Manitoba?

The provincial MAID team is currently made up of 20 people, most of whom work part-time or casual positions:

• Nine physicians

• Four nurses

• Three social workers

• Two speech-language pathologists

• Two administrative assistants

For years, Lisa struggled with eating, anxiety and borderline personality disorders, Downey said. Her sister tried everything — therapy, medication, self-help books, meditation, even re-mortgaging her condo to go to a treatment centre in Brandon — to try to get better. But nothing worked.

"I – 100 per cent – support what she did. You can’t tell a lot of people that," Downey says. "It’s not that I didn’t cry, but when you look back at how much she suffered, how could you wish somebody stay and continue like that?"

Still, Downey says she isn’t sure how she would feel if Lisa had been able to schedule her death with the help of a doctor.

"It’s a tough thing," she says. "I don’t think I would have wanted to know in advance… (but) I think I would support my sister too, if she had known ahead of time and was able to make that choice."

The decision to make any changes to existing MAID laws would have sweeping implications for families across the country.

But such legislative changes, if they happen at all, will have to wait until the completion of a five-year parliamentary review of existing laws, Justice Minister Lametti said in February.

This review is expected to happen in 2021 — five years after passage of the bill that made assisted dying legal in Canada.

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History

Updated on Saturday, March 30, 2019 at 10:15 AM CDT: fixes typo

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