For the last three years, Ron Posno has been defending his right to die. This isn’t how the 79-year-old expected to spend his retirement, but when he was diagnosed with mild cognitive impairment in August of 2016, his life changed — and so did the way he thought about his death.

A lifelong planner, Posno, who lives in London, Ont., did everything possible to manage the terms of his own exit. He worked with his lawyer to change his living will and assigned power of attorney to his wife, who supports his wishes. He laid out eight clear conditions, in writing, under which he no longer wishes to live, all of which have to do with losing mental capacity. But here, Posno knows he is caught in a paradox: Once any of the conditions under which he wishes to die becomes reality, he will no longer be able to consent legally to an assisted death. For this reason, Posno believes Canada’s Medical Assistance in Dying law is a “failure by design,” and he’s on a mission to change it.

The question of advance requests

The law, usually referred to as MAID, was passed by Parliament in June 2016, two months before Posno’s diagnosis. It grants incurably ill Canadians the right to choose an assisted death, but under the condition that they are mentally competent and capable of providing consent at the time of the procedure. The law does not allow for advance requests or directives, which means a person who becomes cognitively incapacitated (as a person with dementia certainly would) can’t access an assisted death.

To Posno, MAID’s rejection of advance requests discriminates against people with conditions that cause cognitive decline. According to Health Canada’s most recent report on assisted dying, 1,086 people received assisted deaths between July 1 and Dec. 31, 2017. In another study reflected in the Health Canada report, when requests were denied, the most frequently cited reason was loss of competency and that death was not reasonably foreseeable.

Dr. Samir Sinha is the director of geriatrics at Sinai Health System and the University Health Network in Toronto. Where Posno sees a clear violation of his Charter rights, Sinha sees a complex ethical issue. Recently, Sinha sat on a Council of Canadian Academies expert panel that examined three kinds of complex types of requests for MAID, including advance requests. On December 12, 2018, the panel delivered The State of Knowledge on Advance Requests for Medical Assistance in Dying report to the federal government, presenting issues with the current law, identifying risks to changing it and listing potential safeguards to mitigate these risks.

For one thing, lawmakers must consider the risk advance requests could pose to people who are incapacitated by cognitive decline, and who could become vulnerable to the self-interest of family members and other substitute decision-makers. In such cases, advance requests could be used as tools of coercion against the very people whose interests they’re meant to protect. The report states: “Removing a requirement for express consent immediately prior to the MAID procedure raises the possibility that a person might receive MAID against their wishes.”

Only four jurisdictions (the Netherlands, Belgium, Colombia and Luxembourg) allow advance requests for assisted dying, and only under certain conditions. In the Netherlands, where assisted dying has been legal since 2002, only six publicly available case reports indicate incapacitated people have received assisted deaths based on an advance directive. Each of the six patients had advanced dementia, and some of the cases stirred up controversy. In one of the cases in particular, an oversight body found that the physicians had not acted in accordance with the law. “Even in the Netherlands, [the question of advance requests] hasn’t been figured out in a way where everyone is comfortable,” Sinha says.

Defining vulnerability

Posno thinks the argument that MAID’s final consent requirement protects dementia patients is laughable. “Vulnerable people don’t need bad law,” he says. “What makes people vulnerable is avoidance, silence and ignorance.”

Dana Livingstone shares Posno’s scepticism that MAID protects vulnerable people. Livingstone’s mother, Irma, who died in 2018, was told by doctors she likely had both vascular dementia and Alzheimer’s. Irma had hoped for an assisted death, but because of the final consent and sound mind requirements, she could not access one. To Livingstone, it was Irma’s loss of the right to die according to her own wishes and values — as well as her dementia —that made her vulnerable.

In 2014, Livingstone says her mother confirmed with her doctor that she was of sound enough mind to make health care representational changes. At that time, Livingstone says Irma requested three things in writing (although the document was not officially notarized): she wanted to live with Livingstone if her home became unavailable, that Livingstone be on her health care representational papers and her right to MAID. When Irma could no longer make her own decisions, Livingstone and other members of her family found themselves in fundamental disagreement over Irma’s care plan. The family disagreed about who should have the legal right to make Irma’s decisions once her disease incapacitated her. It was difficult to find appropriate facilities and in-home help for a woman with advanced dementia on Vancouver Island. They disagreed over whether institutionalizing and medicating Irma was inappropriate or merciful, and over whether flying her to another jurisdiction for an assisted death (as Livingstone wished to do) was honouring Irma’s wishes or consenting to her murder. Livingstone says there was a disconnect in her family’s principles and Irma was caught in the middle. Livingstone says that unfortunately Irma’s three wishes were never honoured.

If MAID had honoured her mother’s stated wishes, Livingstone believes it would have eased her mother’s suffering and the family’s conflict. “The law needs to change so that you can decide with your doctor what stages of the disease become intolerable for you, and you can make an advance request,” Livingstone says. “How do we determine what suffering means for another person?”

Exiting early

On November 1, 2018, 57-year-old Haligonian Audrey Parker died of an assisted death. It was a peaceful event carried out with her full consent, but there was one significant issue: Parker had hoped to live until Christmas and New Year’s Eve. Parker, whose stage-4 breast cancer had spread into her brain, expected to be too incapacitated to provide final consent by then and because of the current state of the MAID law, had to make the decision to end her life earlier, while she was still able. Her case attracted considerable media attention, which was Parker’s intention; she wanted to shine a spotlight on the final consent requirement in Canada’s MAID law, which she called “unfair and extreme.” Parker’s death has fuelled the national conversation about the assisted dying law and end-of-life care.

Weeks after Parker’s death, when the Council of Canadian Academies reports were released, Dying with Dignity Canada issued a strong statement to the federal government. The human rights charity, which defends end-of-life rights, is a staunch advocate for MAID reform. “Even before these studies were conducted, the government was aware that Canada’s assisted dying rules discriminated against suffering people on the basis of their medical condition,” said Dying With Dignity Canada CEO Shanaaz Gokool in an official statement.

Posno is equally appalled that Parker was compelled to die early to retain her right to choose. Preserving life, even against the wishes of the patient, should not be the goal of medicine. “What is life? Is it as long as your heart is beating?” Posno says. “The centre of my life is my brain. When that’s gone, my life is gone.” He believes assisted dying should be part of palliative care, and any Canadian should have the right to declare what they do and don’t want regarding medical interventions. “Caring can be interpreted in terms of support in dying,” Posno says.

Morals and medicine

The Canadian Society of Palliative Care Physicians doesn’t share Posno’s opinion; it officially opposed Bill C-14 before it became law. In October 2017, the society conducted a member survey on MAID, which found that 57 per cent of respondents would support allowing advance requests for assisted dying, but not unless strict safeguards to reduce harm are put in place. These safeguards include national criteria for certifying substitute decision-makers, robust best practices for determining competence in patients and legal protections for medical personnel. These measures are intended to protect patients, but just as significantly, they protect medical professionals from situations that can be confusing and morally fraught.

Sinha says there have been cases in the Netherlands where advance requests aren’t carried out because there is just too much uncertainty about the patient’s wishes. “It’s hard to interpret in certain circumstances whether [an assisted death] is what that individual still really would have wanted at that point in time,” he says. This persistent uncertainty motivated 350 Dutch physicians to sign a petition in February 2017 denouncing assisted death for people with advanced dementia. Their reason? “Moral reluctance.”

People with advanced dementia can seem content and responsive, placing their decision-makers and care team in a position of unbearable responsibility: Am I honouring this person’s wishes, or am I forcing their hand? As a physician, what should I do if a patient seems to be resisting the procedure? “Should we push through and force the act to occur because this is what the patient said they wanted 10 or 15 years ago?” Sinha says. Sinha adds that what we expect to make us suffer isn’t necessarily what will make us suffer. In some cases, mental decline can change a person’s perception of their situation.

Legal system vs. health care system

It’s impossible to talk about Canada’s MAID law without a conversation about Canada’s health care system, which is currently unprepared to handle rising numbers of dementia cases. Today, half a million Canadians are living with dementia; by 2031, that number is expected to increase by 66 per cent. Costs are rising, both for the health care system and overburdened care partners. Canada still has no official national dementia strategy, although legislation is in place to create one this year.

Posno, who has spoken widely on living with dementia, says the disease is rarely the subject of open, frank discussion. Instead, it’s treated like a “social disease,” to the point where he’s heard of people refusing to share their dementia diagnosis with their spouses. While dementia remains so poorly understood, quality care will be difficult to access.

Livingstone worked in dementia care for 12 years before her mother’s diagnosis. “It’s not a good death,” she says. Thousands of patients with dementia are cared for in hospitals, which are ill-equipped to meet their needs. Most family members and friends struggle to care for someone with advanced dementia, and most families don’t have the means to access high-quality private care. Livingstone describes the rising numbers of dementia cases as “a coming epidemic.” Compared to overhauling Canada’s health care system, amending MAID seems comparatively easy, which may be why advocates for legal reform are so determined. “If we can’t have quality care, then I would pick the right to die,” Livingstone says.

The Canadian Society for Palliative Care Physicians hopes to avoid the situation Livingstone describes. In a 2016 brief to the Standing Committee on Justice and Human Rights, the society recommended amendments to draft Bill C-14, specifically, a clear and substantial commitment to palliative and end-of-life care. The brief states, “We want to ensure that patients do not choose hastened death [used here to mean ‘assisted death’] due to lack of access to high-quality palliative care services.”

This is Sinha’s worst-case scenario — that some people will look to MAID as a solution because they can’t access good health care and palliative care. “That would be a travesty,” he says. In his opinion, improving our health care system could calm the heated conversations around Canada’s assisted dying law. “If people felt there could be a high level of care provided and had a better understanding of what dementia is and isn’t, then I think there would be less distress about MAID as an option,” he says.

Life and death

At its heart, a conversation about assisted dying is a conversation about living well. Sinha says a growing body of statistics from jurisdictions where MAID is legal show that many people who request an assisted death don’t actually choose to go through with it, but they may gain a therapeutic benefit from knowing they have the option. A dementia diagnosis can be terrifying. “Knowing you have control over your future can alleviate a lot of distress,” Sinha says.

Posno, who lives with a version of this distress each day, is hopeful that MAID will change; he just doesn’t think it will change in time for him. The Council of Canadian Academies report bears this out: It calls not for speedy legal reform, but for further research on end-of-life practices in Canada and worldwide.

As research slowly progresses, Posno continues to write letters to policy-makers, to give talks about dementia and to advocate for his rights. “The law has provided me with my choice,” Posno says. “No one has the right to limit my choices.” [ ]