ILLUSTRATIONS BY JUSTINE WONG
Konia Trouton is a physician based in Victoria who is one of the many Canadian clinicians providing medical assistance in dying (MAID).
Packing for work each day has required more thought than usual in the new normal of the COVID-19 era. I’m now in the habit of paring down what I need to only the bare essentials, carried in a slim, over-the-shoulder briefcase that I check every time I leave the house.
Hand sanitizer and yellow PPE gown: check. Mask, vinyl gloves, extra plastic bag: check. This is all standard procedure these days.
Then, I make sure I have three crucial pieces of paper – a form requiring a final signature, another one to list amount and timing of medications used, and a numbered certificate: check, check, check.
I dig into the larger section of my bag; inside, there are three smaller bags, one for each stage of my work process. The first has a tourniquet, a few alcohol wipes, three narrow-gauge safety IVs, tape dressing and an extension tubing that allows me to do my work from more than a metre away. The next bag, my “end” bag, holds my stethoscope, gauze, tape and a Band-Aid. Nestled between them is the most important one: my bag of eight syringes – four medications and four saline flushes.
On this early October day, I’m practically ready for work. But before I leave, I take a few moments to review and reflect.
The night before, I had called Jack Morrison, my 101-year-old patient and one of the oldest people in Canada to access MAID. (Jack’s daughter has agreed to having his story be shared.) I asked him if he was really sure that tomorrow would be the right time for me to help. I wanted to know if he had had enough time to talk to everyone; I wanted to know whether he had settled what he needed to; I wanted to know if he managed to finish the past weekend’s cryptic crossword. He was sure, he told me. He said he’d decided that the only two people he wanted at his bedside were his daughter – his family caregiver and closest companion – and his favourite health care aide at the lodge where he had spent the past two years, who had been training as a doula for this kind of work. “She’s right for the job,” he said.
The job – my job – is providing medically assisted death.
In 2010, a B.C. woman named Lee Carter helped her mother, Kay, who had degenerative spinal stenosis, end her life by travelling to Switzerland for medical assistance in dying (MAID). Ms. Carter then helped launch a court challenge against the illegality of such a procedure in Canada, arguing that it violated her mother’s Charter rights to life, liberty and security of the person, and to equality. In the resulting 2015 case of Carter v. Canada, the Supreme Court of Canada ruled that it would no longer be illegal for a clinician to assist in death.
In response, after an election and an extension – and amid fierce debates around morality and ethics – the federal government enacted Bill C-14 in June, 2016, amending the Criminal Code to reflect the court’s ruling and providing the country’s first legislative framework for MAID. Anyone requesting it had to be at least 18 years old, be eligible for government-funded health services, make a voluntary request that is not coerced, give informed consent after being provided with information about ways to alleviate suffering, and have a “grievous and irremediable medical condition.”
But Kay Carter, whose excruciating pain and onerous efforts to die in Switzerland sparked the MAID legal battle in the first place, might not have herself qualified for an assisted death under Bill C-14. She was believed to have had up to eight years from her diagnosis to death, meaning her passing wouldn’t have been “reasonably foreseeable” – one of the four criteria of having a “grievous and irremediable medical condition.” To qualify as having such a condition, someone must meet those four criteria:
(a) they have a serious and incurable illness, disease or disability;
(b) they are in an advanced state of irreversible decline in capability;
(c) that illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable; and
(d) their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining.
That framework, too, was never buttressed by a practical translation for clinicians. There was no medical course, for instance, about how to apply this law to a one-on-one patient encounter. That’s where practitioners such as myself have had to come in – to interpret the law and figure out the best practices. That clause about a “reasonably foreseeable” death has been particularly challenging to translate, because we’re not always good at predicting when someone might die from one cause or another; it is not an exact science. But that’s the position we’ve found ourselves in.
Those ethical and legislative debates raged again after Quebec’s Superior Court declared in 2019 that the federal law’s “reasonably foreseeable” criteria was invalid because it violated the Charter rights to life, liberty and security of the person for those who qualify but are not terminally ill.
After a thrice-extended deadline given by the Quebec court and much tussling between the House of Commons and the Senate, a new legislative effort to amend the Criminal Code and work in this judicial development – Bill C-7 – officially passed into law last week.
The coming changes will have benefits for some people and obstacles for others, and things still have to play out. But this much is certain: It will require additional complicated conversations and more tricky acts of subjective interpretation.
I know that talking about death is not comfortable or familiar. Most people tend to just avoid thinking about it. But perhaps by understanding how I arrived at my choice to be intimately involved in the end of life, I can help clarify why I believe this bill improves the lives – and the deaths – of Canadians who want it. Because for me, that is the key: The grace of this death is that it is for Canadians who specifically and intentionally request it. Grace, I’ve learned, is in the giving – but it is also in the asking. At the core of my practice is consent – a spirit that I believe must remain preserved in the law.
When I first entered medicine in the 1980s, I never expected to get involved in end-of-life work. I was committed to the intersection of health and human rights, and so I volunteered at the start of the HIV pandemic with the after-hours AIDS hotline in Kingston, talking people through health care crises amid rampant discrimination. After that, I did a residency in family practice, pursued a master’s in public health at Harvard University, and then worked in 17 clinics and hospitals across Canada as an abortion provider while working in public health. This included leading Population Health in Nunavut, helping to set up a new Inuit-centred health care system. And in 2003, my partner Dawn and I founded the Vancouver Island Women’s Clinic in a part of Canada where no such facilities had existed. My clinical work expanded from abortion care to managing miscarriages and ensuring contraceptive services.
In short, my clinical work has basically been about ensuring access to choices and navigating challenges much earlier in a person’s life, rather than at the very end.
But something changed in me when my father-in-law passed away in 2014.
He had been active all his life; even after retiring from the transportation sector, he regularly curled, golfed and cross-country skied into his 80s. But in 2009, he was diagnosed with Lewy body dementia, prompting memory problems, disorientation about time and place, and the increasing inability to care for himself – to walk, eat and talk.
He was the first close family member who I witnessed experiencing a progressive and irreversible decline toward death. Each time we visited, we thought it might be the last; we said what we believed to be our final farewells often. For my mother-in-law, the goodbyes were daily, as she lost more and more of him. Three years after his diagnosis, he stopped being able to recognize us, and protested when we tried to help with dressing and washing.
Even when he finally slipped into a non-rousable coma, we knew he’d survive longer than the doctors estimated because of how strong his body was – and in the end, he lasted 13 days. The physicians said it was a miracle he survived for nearly two weeks, but it didn’t feel like one. We realized that, in all that time, we never discussed with him what he wanted for his death.
As an extended family, we talked about what we would want if the situation was reversed. We all concluded that we wanted choice – and in particular, the option to seek an end to life before we lost the ability to communicate with those we love.
Shortly after my father-in-law’s death, I became intrigued by the news that the Carter case had won the day at the Supreme Court of Canada. I thought that this could lead to a way for me to help create the world we’d talked about. I found myself extremely curious about being part of this new frontier in Canadian health care.
Decades ago, Ronald Bayne was one of Canada’s only specialists in geriatric medicine. In February of 2021, a doctor helped him end his life at the age of 98. Before he died, he spoke with Globe health reporter Kelly Grant about MAID, seniors’ rights and the life he leaves behind.
Before I committed to getting involved, though, I wanted to see if the discussions around the practice would engage or repel me. So Dawn and I travelled to Amsterdam for the annual conference of the World Federation of the Right to Die Societies. I remember quite the scene at the convention centre when we arrived: A huge banner that read “EUTHANASIA 2016″ was stretched across the outdoor plaza. I was surprised at the audacity of such a bold sign, but even more surprised that the banner seemed invisible to passersby – though perhaps in that more libertine city, it only made sense that no one even paused on the pavement in front of it.
The conference itself bore the hallmarks of a strong, vibrant and international movement. I engaged in earnest conversations, looked at the specific tracks for those interested in MAID’s legal, medical and activist considerations, and perused information-laden booths from various countries and organizations. I even met a Swiss support person who offered to show me footage of a recent death he had overseen, to help situate me in what an assisted death actually looked like. This may seem shocking on its face, but under Swiss law physicians only provide and set up the medications or IV for the patient to initiate unaided, and a video of this must be kept by the health care team in the event of a police investigation.
So in an unused breakout room, I watched the video of a Swiss family gathered around their loved one as she opened the IV and went to sleep. They weren’t distracted by the support person’s presence – no one so much as looked in his direction as tears fell, unchecked. They were moved, but they weren’t inconsolable. I could feel the atmosphere through the screen: There was a beautiful kind of music in the silence.
I sat and wondered if I had it in me – to hold my breath and be part of such a moment, to let the energy and leadership of the person dying take charge. And in that moment, I knew the act was an act of honouring – to grant a person’s wish of death when living held no possibility of hope, of cure, of lessened suffering. That video helped convince me that Canadians needed this kind of space – even if it would require me stepping outside my comfort zone. Crucially, Dawn and my son Jordi offered their unconditional support.
Dawn and I then started planning our next steps. We informed the public and set up a referral system and a phone and e-mail separate from the Vancouver Island Women’s Clinic, to create a firewall from our other health care services. We faxed all the clinicians who referred to us. We established a website and learned the logistics of triaging MAID referrals. I had meetings with the local chapter of Dying with Dignity, the local health authority, hospice, and the College of Physicians and Surgeons – organizations that were informing the public or establishing standards for health professionals but needed to know quickly, from people like me, what the day-to-day mechanics of this clinical field were going to look like.
Within that first year, eight colleagues and I founded the Canadian Association of MAID Assessors and Providers (CAMAP) – an organization of clinicians across the country focused on translating Bill C-14 into standardized clinical practice.
I naively suspected this work might involve doing two to three assessments and one MAID provision every few months. After all, my Dutch colleagues had told me in Amsterdam that family physicians might expect one or two requests for assessment in an entire career; in Holland, they said, the prevalence of assisted deaths is about 4 per cent of all deaths.
I was wrong. I wound up completing more than 250 assessments between July, 2016, and November, 2018, when formalized federal reporting began.
I began to learn that narratives for the assessment and the provision of MAID are as unique as the people who request it. Sometimes, people ask for MAID when they are in their final days, and even having a conversation takes all their energy. Others want to have the option of an assisted death because they realistically anticipate that their illness or disability will lead to increased suffering and further decline. People have very different visions about when, where and how the MAID is provided. The first two people I assisted back in the summer of 2016 had a very clear idea of what they wanted the event of their death to look like, from the type of death (one opted for the oral medication, the other for the IV) right down to what music would play. There are decisions around things such as location: outside in a hammock, or on the balcony, or in a hospital room, or at home in a bedroom, or in a favourite armchair.
As time went on, I got more comfortable starting the conversation that has become core to my practice: “Do you know what you want it to look like?” The discussion makes the choreography easy for me. And that is really what it is: a choreographed dance, as studied but as graceful as ballet.
It really sunk in that people who requested assistance to die knew what would make this moment graceful, or as dignified as possible. Those who qualify for MAID are ill, declining, close to death and have lost quality in life. They know this, and they tell me – and they want to complete their life as they choose. This was unexpected to me, and yet not. The opportunity to have the right to die was demanded by the public, not by physicians – just as the right to reproductive choice was fought by women. We clinicians can take supporting action because people need and want us to help.
I can still remember, in the assisted-dying video I watched in that Amsterdam conference room, the music of the moment of passing. As I went forward, I realized my job was just to follow the steps someone else had laid down on the dance floor.
Jack Morrison got right to the point when I met him for the first time.
“I’m done. Let’s get on with this,” he told me in late September. “What do you need to know?”
The centenarian had a bright mind and was acutely aware of issues of the day; he made it clear he didn’t like to make a fuss or bother people. For him, living in the local veterans’ care facility reminded him of the worst aspects of his days in the Canadian Army during the Second World War. He had served as an officer in the 2nd Artillery Regiment, mostly based in the U.K.; he met his wife, an English air raid warden, in London. Jack was decommissioned from the army after his participation in the liberation of Holland and his return to Canada, but now his life meant that once again he was on someone else’s schedule to eat, wash and socialize.
He’d fractured his hip at 99, and despite making an unexpected recovery, it left him in frequent pain. When we spoke, he rocked back and forth in his chair to ease the continuing agony in his knees and to keep his circulation going. His eyesight was failing and his fatigue was increasingly pronounced. He developed slow-growing bowel cancer, which caused even more pain and diminished his ability to swallow and digest.
But for him, his medical condition was secondary. It was the psychological change that was the most profound. He was wheelchair-bound, living in a nursing home, with a hoist above his bed and no lock on the door. The once simple task of swallowing his pureed meal had become scary, and so he had lost weight, strength and resilience. They were very kind there, he said, but kindness was no longer enough. I asked if he considered these last few years as palliative care; he was sure it was.
All along the way, Jack retained the capacity to make his own decisions. He submitted his request on his own, and by doing this, he clearly believed he met the criteria. But the formal request required him to initial and therefore attest that he met the four criteria of the crucial “grievous and irremediable” MAID condition. He needed two witnesses – two people who were not looking after him and who were not his relatives – an even taller task amid COVID-19 restrictions. He was no longer under the care of a family physician, who may have known him for many years; instead, he, like many others in nursing homes, was under the care of the clinician responsible for the people in that facility. If a resident hasn’t been there long, the file can be very slim.
His process may have looked different if the latest iteration of Canada’s assisted-dying law, Bill C-7, was already under effect at the time.
The bill’s changes will largely reduce barriers to access. MAID applicants now only need one witness for their request, rather than two – and that witness can now be someone who provides paid personal care or health care services as their primary occupation. On a topic much-deliberated by the Senate, those with mental illness as their sole underlying medical condition remain ineligible for MAID, but an independent panel of experts will be tasked with recommending how this can be made possible within the next two years.
Most significantly, Bill C-7 also creates two separate tracks for those seeking MAID and who fulfill the first three of the four “grievous and irremediable condition” criteria: one track for people whose deaths are reasonably foreseeable – as had been the case under Bill C-14, before the Quebec court ruling – and one for those whose are not.
The clinician’s first task is now to ascertain which track the person is likely to fall under, which determines how extensive the assessment will be, and whether advance consent is permitted. If death is reasonably foreseeable, there is no longer a 10-day waiting period between requesting MAID and obtaining that service. Also, if the clinician and applicant have concerns that they could lose capacity before the set date for the assisted death, Bill C-7 allows applicants on this track to waive the written consent that is normally required on that day, as long as there is no demonstrated refusal of that assistance.
This is important to me: I’ve seen some patients worry about this result so much that they have either withheld pain medications for fear they might become too drowsy to consent, or even be denied the death they’d wanted. And indeed, this change happened in large part because of the activism of Audrey Parker, a Halifax woman who was eligible for MAID but, worried that her cancer would spread further into her brain and strip her of her capacity to give final consent, chose to receive it in November, 2018 – rather than after Christmas that year, as she had wanted.
If the person’s death is deemed not reasonably foreseeable, C-7 requires a written opinion by a clinician with expertise in the condition causing the person’s suffering, which may be challenging for patients who do not or no longer have a family physician familiar with their conditions and files. This assessment must now include at least 90 days of efforts to identify and lay out alternative “reasonable and available means to relieve the person’s suffering.” This is good news for many who have not had the chance to explore many options, but it may seem like a long, arduous delay for others committed to MAID. But it does make MAID accessible to them.
For Jack, the one-witness change would have made things easier, as most of the people he was able to see during the pandemic were either looking after him, or closely related to him, and therefore not suitably unbiased witnesses under Bill C-14. Jack was also determined to have a “reasonably foreseeable” death, and so I would not have been able to provide MAID if he had lost capacity on the planned date. Under C-7, that would be different.
My colleagues in CAMAP and beyond have already had to discern how to apply the new law when it came out in 2016, and these new factors may only necessitate even more complicated subjective interpretations in offering MAID. Not all my clinician colleagues across Canada would find a frail person to be eligible for MAID under C-14; few would find a person with significant progressive disabilities eligible. But those are the scenarios we will have to address in the coming months. Will there be selective engagement in MAID among the clinicians in Canada? Will there be those who assist only patients whose death is reasonably foreseeable? Because of these unclear new factors, patients may need to take an even greater role in managing health care interventions near the end of their lives.
That, however, should already be the norm. When I was in residency 30 years ago, we worked hard to establish an elderly patient’s “code status” – getting pre-admission clarity around whether people wanted CPR and/or defibrillation if they had a sudden heart attack. Now, advance planning is more nuanced. Many people have a health care decision-maker, often different from the power of attorney or executor. Others have articulated what specific interventions they’d want if they become ill, such as an IV or antibiotics, in addition to the level of care for acute conditions such as stroke or heart attack. In 2016, Canadians were allowed to be even more particular about how they want to die – naturally, or with assistance – and they have even more options today. Things are becoming more complex, but a simple truth is that decisions around death cannot be delegated. Consent and planning should be in the hands of individuals themselves.
As a clinician who provides assistance to die, I don’t have many of these discussions. I don’t have a family practice, after all. I am simply providing, in my act of care, the grace to die. I come in to make an assessment at the end – once the other clinicians have tried their best, once the palliative-care services are already in place, once social services have been optimized. That’s where I meet people where they are, on the day I’m with them, in the final weeks of their life.
In most situations under C-14, people have gotten the outcome they wanted. We clinicians will adapt to C-7, too. I know that my colleagues and I will keep the main goal in mind: trying our best to be kind, prepared and thorough.
Perhaps that’s not enough for you, from an ethical standpoint. Perhaps you’re still asking: Why did Jack have to die? Did he die of old age? Did he die with dignity? Was it right that he died this way? I can’t answer that for you. But for me, I go back to the first thing that he himself told me: “I’m done. Let’s get on with this.”
His daughter told me that he watched the clock that day until the minute I arrived, and then immediately offered me his wrist, pointing out a good vein. While I offered a pen instead, his gesture was clear: He was ready to die, and defined the date and time for this because dwindling any further was not an acceptable option for him. Agency was still very important to him. He wanted this.
For Jack, leading the dance of life had not been possible before this moment because for several months, he needed others to dress, feed and bathe him. But on this day, he had choice. He chose to settle on his bed, on fresh sheets and after a morning wash by his favourite care aid. He chose to accept a final spiritual blessing from his daughter, a United Church minister. And then, once his consent was given, he chose to allow me to finish out his last decision: starting the IV, and administering the medications that would relax him until he slipped into a coma.
On that October day, the three of us in the room with him watched as his breathing stopped and his heartbeat became undetectable. And when he became pale and still, suffering no longer, we in the room felt we had heard his choices and honoured him, in many sacred ways.
Keep your Opinions sharp and informed. Get the Opinion newsletter. Sign up today.