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For people with dementia, a fight for the right to die

The Alzheimer Society of Canada is reconsidering its position on advanced requests for assisted death, amidst a difficult debate about the rights of those with dementia
Ottawa has posted draft regulations designed to allow the federal government to produce reports that give a nation-wide overview of medical assistance in dying. Minister of Health Ginette Petitpas Taylor speaks with the media outside the House of Commons, in Ottawa on Thursday, November 30, 2017. THE CANADIAN PRESS/Adrian Wyld

Ron Posno was diagnosed with mild cognitive impairment—a precursor to dementia—in 2016, and soon after, the London, Ont., resident re-wrote his will. He already had a Do Not Resuscitate order in place, and to this he added instructions for the niece who was his substitute decision maker that at a specific point in the progress of his illness, she was to seek medical assistance in dying on his behalf.

The eight conditions that Posno identified as signalling the proper time for his death are like a photographic negative that also reveals what he considers a life worth living. When I am unable to recognize and respond to family and friends; when I frequently experience hallucinations, paranoia or acute depression; when I become routinely incontinent; when I am unable to eat, clean or dress myself without assistance: that is when I want it to be over.

But then Posno’s niece, a lawyer in Toronto, informed him that an advance request like this for medical assistance in dying (MAID) was against the law and she would have no ability to act on it once he could no longer consent.

Posno had assumed that this request was basically an extension of his DNR: a statement of his desires for medical treatment in a given set of circumstances. He found it incomprehensible that he could legally state that he did not want CPR and the instruction would be followed if he were unconscious with a DNR in place, but in the face of an illness that would eventually render him unable to provide informed consent, he couldn’t request MAID on behalf of a carefully delineated future version of himself.

“These eight conditions are like signposts on the road to decline. I am declining. My mind, literally, is being destroyed on a daily basis. There’s nothing I can do about it, there’s nothing anybody can do about it… It’s just disappearing,” the 79-year-old says. “I do not want to live like that. I don’t want to do it, I don’t want to inflict it upon the people who care for me.”

READ MORE: Jo has Alzheimer’s. He’s 38.

MAID is “likely the most compelling piece of health legislation” Canada has crafted in decades, he says, “And yet it fails, and it fails primarily because it discriminates against people with dementia.” Posno has spent the last year waging a vocal campaign of advocacy and agitation against what he sees as a galling infringement on the rights of people with dementia.

Under Canadian law, MAID is available to adults with a “grievous and irremediable medical condition” whose natural death is “reasonably foreseeable,” and medical professionals must obtain informed consent from the patient just before administering the life-ending medications. In the late stages of dementia, people no longer have the capacity to provide that consent, and there is no provision in the legislation to work around that.

Of the three special circumstances that were excluded from Canada’s assisted dying law in 2016 and set aside for further study—advance requests, mature minors, and cases where the sole underlying condition is mental illness—advance requests are, by far, the circumstance that has generated the greatest interest, demand for change and fraught contemplation.

And rising rates of dementia in an aging Canadian population, the very nature of a condition that inexorably means an eventual loss of competency, and many people’s knowledge, fear and deep antipathy toward the idea of lingering in the later stages of the disease has centred much of the debate about advance requests in the world of dementia.

To Posno, the absence of advance requests in Canada—they are available in some form in just four countries worldwide, and even then employed with vanishing rarity in cases of dementia—is an appalling omission that deprives him of the rights afforded other Canadians under the Carter decision in which the Supreme Court of Canada struck down the prohibition against assisted death.

“MAID was designed deliberately to exclude people with dementia because of this general naive and very biased notion that people with dementia are vulnerable,” he says. The refrain he hears again and again to explain the opposition to advance requests is, “We must protect the vulnerable.” Posno’s voice is tipped with acid when he responds: “I’m not vulnerable.”

The Alzheimer Society of Canada has been one of the prime targets of his advocacy campaign over the last year, due to a formal position statement in which the organization opposed advance requests. “The Alzheimer Society of Canada believes that because we cannot predict future suffering, providing advance consent for MAID should not be possible for people with dementia,” the statement said, in part. “The Alzheimer Society believes that people with dementia need to be safeguarded as they will be extremely vulnerable at the end of their life.”

That position statement was released right before assisted death was legalized in Canada and in place until February 2019, when the ASC pulled it for review. An updated version will be released mid-summer. And in fact, the re-examination within the organization of its approach to MAID and advance requests began well before Posno publicly raised his concerns.

“When I arrived at the Alzheimer Society a few years ago, it’s the first question I asked: ‘How did we come up with this and why did we end up there?'” says Pauline Tardif, who took over as CEO in the spring of 2017. “It can be perceived in a negative way as non-supportive of people who may want to self-advocate or have authority over their affairs right to the end of life. For the same reason Ron is questioning it…I had the same question.”

The ASC arrived at its original position through consultation with experts in health care, ethics and law, as well as people living with dementia. The institutional soul-searching that went into that process—and the revision currently underway—reflects both the profoundly difficult issues surrounding advance requests broadly, as well as the difficult fit between MAID and the society’s core missions.

The stigma of dementia is one of the most common problems her organization hears about, Tardif says, and people with dementia often say they feel like the progress of their illness gets artificially accelerated when people assume they can no longer drive, or talk about them instead of to them.

She worries that people with dementia may internalize that stigma, too, and if advance requests were available, some may opt for MAID out of a warped sense of what their future life will be like, or fear of being a burden. “The fact is that many people with dementia lead very meaningful, active lives for quite some time after diagnosis,” she says. “The fear, or the unknown, or the projection or the assumption that people don’t have quality of life or have meaningful life—however an individual diagnoses that—makes it challenging for some.”

Another of the major concerns of the ASC mirrors one heard in the palliative care community: their mission is advocating for more supports and better care, so they worry MAID could inadvertently become a sort of societal escape hatch that undermines the quest for more resources for overwhelmed caregivers. “So instead of society having the reflex of supporting that family through their dementia journey, that could be an easy out,” Tardif says.

One of the most existential concerns around advance requests is the unknowable quality of the inner life and desires of people in late-stage dementia. Tardif comes to this with very personal and recent experience: in January, her mother died after living with dementia for a number of years. “Would she have wanted to live in this way? If I had asked her 30 years ago, she would have said ‘No way.’ I know this,” Tardif says. “But would I have been able to make the decision to say, ‘Oh no, this is the time where she would have said no’? Personally, I could not have done that, because I wouldn’t have known if that was last year or next month or even right to end of life.”

More than anything, it was the newness of Canada’s MAID regime and the unknown territory into which the country was venturing that caused the ASC to adopt a policy that may have appeared “overly cautious or even protective,” Tardif acknowledges. “It was well-informed, but at the time, the law was just passing, and I would say that our instinct, if I can call it that, was to ensure that we took the right time to look through the complexities of the file,” she says.

The new position the society will adopt this summer will not advocate for or against a particular policy, but rather focus on providing information and support for people with dementia, regardless of their choices.

The Liberal government has said it has no plans to re-jig the law to include advance requests, with then-Justice Minister Jody Wilson-Raybould saying in November that the government is confident its legislation “finds the right balance in terms of being able to access medical assistance in dying, protecting the autonomy of individuals to make the appropriate decisions for themselves, as well as protecting vulnerable individuals.”

So for now, the debate is purely a theoretical one, but given the profound issues at play, it is unlikely to fade away. “It may be impossible to square, right?” Tardif says. “We may need to accept that it is a very complex onion that we need to peel back slowly.”

Jim Mann, of Surrey, B.C., comes to the issue with similar experience to Posno, but he has arrived at a very different conclusion. Mann has observed firsthand and twice over the stigma attached to dementia: His mother was in the late stages of dementia in 2007 when he was diagnosed with Alzheimer’s, at the age of 58. He’s seen how people will ask a caregiver how a person with dementia is doing while the person is standing right there.

Like Tardif, he worries that people can internalize that stigma and “panic” about their own futures, which is why he is not in favour of advance requests. “Some people—I think personally it’s probably a fair number of people—are just afraid of getting to the end of the dementia journey, the idea that you lose your independence, the idea that you might lose your communication skills, the names of your family and so on, just that idea is incomprehensible,” he says. “Because of that projection into an unhappy moment or an unhappy situation, then their current vision is one of ‘I won’t go there.'”

Mann has come to think about dementia in terms of the creativity required to live with and work around it. When he realized that loose change was tripping him up at a cash register, for example, he switched to using only bills. He applies that same sense of accommodation to thinking about quality of life and sources of happiness in the latter stages of dementia.

As his mother’s illness progressed, they would often sit in the lounge of her long-term care facility and watch the show through the south-facing windows. Planes took off and landed at a nearby airport, and while his mom called them “the bus,” Mann knew exactly what she meant and it was a shared experience they delighted in. The landscape bloomed into life in the spring and took on a burnished palette in the fall, and they soaked it all in together. “That was joy,” he says. “I like to think you can still bend over and smell a rose; you might not know what it is, but the smell is lovely. Why miss out on that? I just wouldn’t want to.”

But while Mann bases his opposition to advance requests on a clear image he has of the later stages of his own illness—and the sort of adjusted-but-real happiness he believes can be found there—Posno’s equally vivid notion of what lies ahead is precisely why he wants the power to decide on his ending.

“I can talk to you, I can sing songs. You can keep me busy all day colouring a colouring book, I can go to bed every night with a teddy bear. That’s what they do!” he says, his voice leaping an octave in outraged horror. “That’s what’s considered a normal, happy life for a person in that last terminal [stage].”

To Posno, the argument that he won’t be aware of or distressed by his condition then is irrelevant: the Ron of today can see over that horizon and abhors the idea of his future self living it. And similarly, the notion that someone in late-stage dementia might seem contented and free of obvious suffering, and that a substitute decision-maker or doctor might be reluctant to act on an advance request because of that, misses the point.

“My mind will not have changed; my mind has disappeared. They have no right to say I’m happy and I deserve to live. I am not living at that point, I am existing,” he says. “Your life is in your mind, and when your mind goes, you are not alive.”

The chasm between Mann and Posno’s visions of their future, and the ways in which the Alzheimer Society has struggled with this issue, all point to the same truth that underpins the confounding issue of advance requests: How and when you wish to die is, really, about how you want to live.