UPDATE (Dec. 18. 2020): The federal government now has until Feb. 26, 2021 to pass C-7, legislation that expands access to MAID by eliminating the requirement that death be “reasonably foreseeable.”
Inside his home office in London, Ont., Ron Posno is surrounded by reminders of his past achievements: awards and trophies for teaching, public speaking and golf. There’s a framed black-and-white photograph of Posno’s class at Quebec’s Royal Military College Saint-Jean. There’s a service award from the Rotary Club of London. But the space is a repository of sorts for his can-do philosophy, too. On his shelves, a number of travel guides and culinary books are stacked, along with those about living with Alzheimer’s and cognitive impairment. A gold-coloured plaque on his desk reads, “You can always tell the size of the man by the size of the things that upset him.”
“My brain is slowly being destroyed,” the 80-year-old retired educator says matter-of-factly. In 2016, Posno was diagnosed with mild cognitive impairment (MCI), which can be a precursor to Alzheimer’s and other forms of dementia. Though he has yet to cross that threshold, and a terminal phase may be more than a decade away, he’s already looking ahead to a series of increasingly degenerative stages in the remaining portion of his life.
Posno, a former recreational pilot who lost his left eye in a plane crash, says that he holds fears mostly for his loved ones, who would have to watch his decline. Once his illness becomes debilitating, he would like to exit peacefully through a medically assisted death. And he wants to request one now, in advance, while he’s still mentally competent and able to make decisions about his future. Posno worries that by the time his suffering becomes intolerable — a requirement to access medical assistance in dying, or MAID — he’ll no longer be capable of giving his informed consent to the procedure, which is also necessary by law. In this way, his dementia could effectively exclude him from MAID eligibility. Canadian end-of-life law “is a failure by design,” he says. “It is an unfair, discriminatory piece of legislation. It needs to be corrected.”
Posno’s wish could be realized in the not-so-distant future. The federal government was scheduled to launch a review of its original MAID legislation in June, but that timeline is now uncertain due to delays from the COVID-19 pandemic. Advance requests will be a key issue, especially in regard to people with Alzheimer’s disease and similar conditions. Dementia, after all, is devastating. And as the Canadian population gets older, more people and their loved ones will be affected. Right-to-die activists argue that the existing MAID legislation deprives most dementia patients of the end-of-life rights afforded to other Canadians.
But MAID opponents, including disability rights activists and some faith groups, reject broadening the current law, insisting that the restrictions are in place to protect vulnerable people, including those who may not be able to express a change of heart. Dementia can also change a person, and what once seemed unthinkable might, in time, become tolerable. Rather than expand access to MAID, they argue, Canada should offer more supports and better palliative care to patients in need. Both sides of the debate will watch closely to see if this upcoming year will be one of profound change for MAID in this country.
Although suicide was decriminalized in Canada in 1972, aiding and abetting the act remained a crime. In the early 1990s, Sue Rodriguez, a right-to-die activist with ALS, opened a national conversation on medical assistance in dying. “If I cannot give consent to my own death, whose body is this? Who owns my life?” she famously asked. Rodriguez lost her case, and it wasn’t until the historic ruling in Carter v. Canada in 2015 that the Supreme Court of Canada decided that a long-standing ban on physician-assisted dying was unconstitutional. The court recognized the practice for consenting adults who have a “grievous and irremediable medical condition” causing them “enduring suffering that is intolerable.”
In June 2016, Parliament responded by making changes to the Criminal Code of Canada. It passed Bill C-14, enshrining the right of Canadians to access medical assistance in dying if certain criteria are met: mostly that they are competent adults with serious, incurable illnesses or disabilities and in an advanced state of irreversible decline. But a person’s “natural death” needs to be “reasonably foreseeable,” too (though a timeline is not stated). Bill C-14 was quickly criticized by constitutional experts, including the lead lawyer in the Carter case, for being too restrictive.
Last September, a Quebec Superior Court judge struck down the “reasonably foreseeable” requirement and gave the Quebec government six months to make adjustments. The Trudeau government has also accepted the ruling, and in late February it tabled legislation to update Canada’s medical assistance in dying law. A new amendment would expand access to people who aren’t facing a “reasonably foreseeable” natural death but meet the other requirements.
In addition, the proposed legislation would ease restrictions for those at the end-of-life stage. These patients would no longer have to go through a 10-day reflection period after being approved for MAID. They would also be able to waive the requirement that they must confirm consent just before the procedure takes place. This last change was a response to the deaths of people like Audrey Parker of Halifax, who had terminal cancer and chose to die weeks sooner than she wanted to out of fear that she would lose the capacity to consent to MAID one final time.
However, the proposed tweaks don’t involve certain types of complex medical cases. In June — the fourth anniversary of Bill C-14’s passage — the government is legally bound to review the law, and it’s expected that advance requests will be of particular concern, as well as the access of mature minors and those suffering primarily with a mental illness.
MAID “is not new around the world, but it’s new to us,” says Jocelyn Downie, a professor of law and medicine at Dalhousie University in Halifax. “So it’s important after a period of time, when we’ve had the implementation rolled out, to step back and say, ‘Did we get it right? Are there things we should change in light of experience?’”
Since MAID was decriminalized in 2016, over 13,000 Canadians have ended their lives with medical assistance. Many people now know someone who has died this way. And many people want to talk about it: a federal government survey about MAID attracted more than 300,000 responses in January, the largest number the Department of Justice has ever received in a public consultation. Among other questions, the survey asked whether a medically assisted death should be granted to patients with diseases like Alzheimer’s who stipulate that they would like their life to end at a later date — when they’re no longer competent enough to give consent themselves. Seventy-nine percent of respondents, a clear majority, said yes. In comments submitted with the survey, some compared advance requests to a will or a do-not-resuscitate order. To ignore clear instructions and prior consent would be unethical, they felt.
Leading up to this year’s review of MAID, the federal government asked the Council of Canadian Academies (CCA) to gather evidence on advance requests, mature minors and mental illness as a sole condition. The CCA is a non-profit organization that supports independent, science-based assessments to inform policy development in the country.
The working group on advance requests looked at three scenarios in which a person may want to make one: “when they have requested and been found eligible for MAID, but fear losing the capacity to provide consent before the procedure; when they have been diagnosed with a medical condition that is likely to cause capacity loss; or when they are healthy but wish to document their preference for MAID in the event of a sudden, irreversible loss of capacity.”
“It’s a complicated issue, for sure…as there’s the possibility of increasing uncertainty with the passage of time” between the initial request and its fulfilment, says Jennifer Gibson, chair of the CCA’s working group on advance requests.
If someone with dementia makes an advance request and then loses the capacity to confirm their wishes, the decision about when exactly to proceed with MAID could fall to their family members and doctors. The CCA report on advance requests says that applicants would state the conditions they would consider intolerable, such as failing to recognize loved ones, being completely bedridden, having difficulty breathing or feeling pain.
Gibson says she has “a lot of empathy” for an individual who has “been true to a set of core values that they really want to see honoured at the end.” The uncertainty factor ought not to be as prominent in the case of someone whose life narrative “demonstrates a consistent set of values and wishes over time,” she says.
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Trudo Lemmens, professor of health law and policy at the University of Toronto, was another CCA working group member, but he takes a more cautious view than Gibson. Regarding advance requests for MAID, he says there is a “problem of prioritizing previously expressed wishes over the current experiences of the person with cognitive decline or disabilities, who may have some pleasures.”
As in many people’s lives, “there are moments of joy, there are moments of sadness and there are moments of suffering, and with people with Alzheimer’s, it’s very often much more immediate,” he says. If advance directives are permitted, “we’re making it impossible for a person, who lives here and now, to express his or her desires, however vague they may be….We’re sending the message that precedent autonomy is more important than current autonomy…and we’re certainly sending the message that cognitive decline, in and of itself, is unbearable suffering.”
Like Lemmens, Heidi Janz has “a deep sense of unease” that MAID will become “normalized” in society. As the chair of the end-of-life ethics committee for the Council of Canadians with Disabilities (CCD), Janz is concerned that if the “reasonably foreseeable” requirement is dropped, “the stereotype of disability as a fate worse than death will become enshrined in Canadian law.”
The CCD views the proposed expansions to MAID as being motivated by a deep-seated ableism — a disability prejudice akin to sexism and racism — in Canadian society. “This general societal ableism is most frequently expressed by the view that people with disabilities necessarily experience a low quality of life,” says Janz.
She points out that the United Nations Convention on the Rights of Persons with Disabilities, which Canada ratified in 2010, guarantees that all “lives, however they are lived, have inherent dignity and are worthy of respect.” This human right “isn’t merely symbolic,” she says. That it may be seen that way “is a symptom of the fact that western society holds autonomy as its primary ethical principle, yet in reality, all human beings are interdependent.” Janz warns that such “social devaluation endangers the lives of disabled people.”
Advocates, however, argue that denying access to MAID is another form of discrimination. “People with disabilities have the same rights as everyone else,” says Dying with Dignity Canada’s then-spokesperson Cory Ruf. “Just because they have a disability or a chronic medical condition, it doesn’t mean that they shouldn’t have the same choice that other people have in the face of intolerable suffering.”
Sandy Posno first sensed something was wrong with Ron when he couldn’t find the exact word he wanted mid-sentence, replacing it with a simple one. It was an unusual lapse for her husband. “He’s always had a pretty sophisticated vocabulary,” she says.
Her instinct proved correct. Since then, his illness has continued to reveal itself, “nerve cell by nerve cell, a burglar returning to the same house each night,” as neuroscientist Zavan Khachaturian has described Alzheimer’s.
“While I may sound and look ‘normal’ in talking to you, I have lost all kinds of things, and I can’t tell you all they are, literally because I can’t recall them all,” says Ron, who once had a near photographic memory. “When it comes to reading, I have a major problem in that often by the time I get to the bottom of the page, I can’t remember what was at the top.”
He’s also lost what he calls his “homing pigeon” instinct: “I could go anywhere, know how I got there and know how to get back.” At the time of this writing, he has difficulty navigating supermarket aisles.
Sandy describes her husband, whom she met when they were both 17, as a lifelong planner — something that now extends to his fight for medical assistance in dying.
Posno has eight conditions — what he refers to as “signposts” — in his power of attorney, any one of which would trigger his request for assistance in dying. These include not being able to recognize or respond to family and caregivers; becoming persistently abusive; developing acute depression or paranoia; or requiring assistance for eating, cleaning himself and dressing.
“When you look at the conditions that a patient is going through at the end of life with Alzheimer’s, it ain’t pretty,” says Sandy, who actively supports her husband’s advocacy. “When you lose your mind and you don’t even recognize your wife, what are you? Why prolong [that]? I can say that we’ve had a good marriage and a long life together.”
When Canada passed Bill C-14 in 2016, many observers initially assumed that people with dementia would be excluded from MAID, because by the time their deaths were “reasonably foreseeable,” they would have already lost the mental capacity to give their informed consent. In recent years, however, some patients and their doctors have questioned that presumption and pushed the boundaries of the law. In October 2017, Mary Wilson, a 74-year-old Victoria resident, became one of the first Canadians with Alzheimer’s disease to die through medical assistance. Her doctors were cleared of wrongdoing after a 10-month investigation by the College of Physicians and Surgeons of British Columbia.
Another Victoria resident, Gayle Garlock, followed in Wilson’s footsteps in August 2019. Garlock was a retired university librarian and scholar when he was diagnosed at 70 with Lewy body dementia. When he was first assessed for MAID in 2018 by Dr. Stefanie Green, co-founder of the Canadian Association of MAID Assessors and Providers, she wasn’t certain that he met the criteria, and she didn’t want to risk being found to have approved him improperly, which is a criminal offence. But she talked to colleagues and legal scholars, and eventually agreed to assist Garlock after a second assessment in spring 2019. By then, according to Green, “he was very unhappy with the quality of his life.” His condition had declined, though it was clear to her that he was still competent enough to consent to MAID.
On the day of her husband’s medically assisted death, with their sons sitting at the foot of their bed, Barbara Garlock lay down beside Gayle, holding him. “I was just lying next to him, saying, ‘I love you’ — just whispering in his ear repeatedly,” she told the CBC. “There was no pain. There was no struggle. It was peaceful. It was absolutely peaceful.”
“It’s difficult to express just how grateful patients and their families are for this care,” says Green, who has helped about 175 people end their life through MAID. “They are so relieved….They are empowered when I tell them they are eligible….Many have felt like they have not had control for so long. Even if they never proceed [with MAID], knowing they can is extremely beneficial for these patients.”
Gayle Garlock hoped that his experience with MAID would open the door for others with dementia. And indeed, in response to pressure from patients and the public, the Alzheimer Society of Canada (ASC) last September changed its stance on medical assistance in dying, saying that it would no longer lobby against the legalization of advance directives. “We respect the right of all persons with dementia to advocate for their individual best interests, including advocating for access to MAID through advance requests,” the ASC said in its new position statement.
The about-face is particularly striking for the country’s largest non-profit organization for people with dementia, and comes as good news for MAID advocates like Posno. But even if advance requests eventually receive a legal blessing, long-term disease progression in dementia raises ethical and practical concerns for some MAID providers.
Only a few countries in the world permit some form of advance directives, and even then, their use is rare. Lemmens points to a recent example from the Netherlands, which was the first country to establish euthanasia as an end-of-life option. The case involved Jacques Beemsterboer, who was diagnosed with Alzheimer’s in 2013. In the early stages of the disease, Beemsterboer signed a living will, in which he indicated that he wanted assisted dying when his suffering became unbearable. He continued to sign the same statement every six months, and his family doctor kept them on file. However, as his dementia advanced, his desire to proceed with the procedure became less clear — complicated by the nature of the disease itself. One doctor concluded, “Mr. Beemsterboer does not currently want euthanasia.” A second doctor decided he wasn’t suffering unbearably because “the boundaries have moved upwards during the disease process.”
In a similar vein, the physician who administered Canada’s first legal assisted death outside of Quebec has said that she would refuse to perform the procedure on a late-stage dementia patient who made an advance request. Dr. Ellen Wiebe of Vancouver told the Globe and Mail in October 2019 that these patients are often either paranoid or contentedly oblivious. “The idea of ever providing [MAID] for somebody who is afraid that doctors will hurt them, I couldn’t imagine doing that and I will not,” she said. “And I would never provide for somebody who was happy and didn’t want to die.”
To help avoid this type of quandary, Downie advises patients against having “triggering criteria that are difficult or impossible for clinicians to assess.” For example, an advance request for MAID that rests on not being able to recognize one’s family anymore wouldn’t be clear enough, because with dementia, that ability comes and goes, she says. Instead, directives should be objective and unambiguous. In an interview with HealthyDebate in February 2019, she points to potential specific criteria, such as when someone is in a “persistent vegetative status, as confirmed by two people for one month post-diagnosis.”
The federal MAID legislation was always meant to be a continuum, not an end point, according to Justice Minister and Attorney General David Lametti. “We always saw it as a process,” he told iPolitics in January. “In 2015, we were in a certain place as a society. We’re in a different place now.” But even in 2020, building consensus on the issue of advance requests may be difficult. Palliative care advocates, especially those representing some of Canada’s faith communities, remain deeply opposed to expanding access to MAID. The choice to end one’s life is irreversible, they argue, and MAID could replace the need to support patients and their families in their dementia journey.
During the recent federal government survey, for example, the Evangelical Fellowship of Canada encouraged its members to weigh in against advance requests and other potential extensions of the law. And in a January letter to Prime Minister Justin Trudeau, Winnipeg Archbishop Richard Gagnon, president of the Canadian Conference of Catholic Bishops, called on the government to improve palliative care instead of expanding access to MAID. “We see all levels of government…give priority to those who want to choose euthanasia and assisted suicide while providing minimal funding and support for palliative care, home care and hospices,” Gagnon writes. “Palliative care seeks to alleviate the pain, loneliness, fear, distress, and despair which can lead to the tragic failure of euthanasia/assisted suicide. It is more humane because it is anchored in the recognition that human life has an objective value over and above our free choices.”
Rev. Christopher Levan, a United Church minister in Salt Spring Island, B.C., and author of the forthcoming book Healing Death, has no “theological opposition” to people with dementia who want to end their life. “We’ve been playing God” for a long time by intervening in the natural course of things, he says. The issue, for him, is how we judge the limits of our own capacity, especially without “significant and consistent palliative care across the country.”
“I’m not opposed to eventually getting to a place where we consider advance directives, but I don’t think we’ve lived with [MAID] long enough to understand all the dynamics,” Levan says. “Nor have we worked out all of the ways that we can make this a healing process before we get onto yet one more stage….And without that, [dying] becomes something pretty cold and technical.”
He continues, “If we don’t participate in that cycle of dying fully, at least in some aspects, we short-circuit our cycle of living.”
Green acknowledges that the alternative to assisted dying is finding the things that still give life meaning. However, she says, “for some people, they’re at a place where that is no longer possible. The tipping point has happened for them where they just cannot find any joy or meaning left, and they are left in a very terrible place, where they feel that…there’s only suffering in front of them. Some of those people want to investigate the option of ending their life earlier.”
In a park across from home, Posno dons his Rotary Club of London jacket and walks along a tree-lined asphalt path. The late afternoon’s warmth has been replaced by the cold of the advancing November evening. The surrounding pines are still awash with the fading sunlight — their whitish-grey bark and green needles highlighted by the ephemeral rays.
Four years after his cognitive impairment diagnosis, Posno knows that his condition will run its inevitable downward course. At some point, he won’t be able to drive his car on his own, and he’s already losing his ability to cook homemade meals for himself and his wife. “Imagine an infant’s mind in a body that’s 80 years old or more,” he says of the reality of late-stage dementia.
For as long as he’s mentally and physically capable, though, he plans to continue advocating for advance requests for MAID. He also wants to help those affected with dementia to learn more about their condition — to “get real, get ready and get a plan.”
“We’ve got a cultural change to go through” Posno says, “to get people to talk about death and dying and the responsibility that goes with it.”
Editor’s note: This post was updated May 25, 2020 to reflect news that the timeline for the federal government’s review of its MAID legislation would be delayed due to the COVID-19 pandemic.
This story first appeared in Broadview‘s June 2020 issue with the title “Final wish.”
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