When Death Is the Best Choice, Is It a Choice at All?

When Death Is the Best Choice, Is It a Choice at All?

When Death Is the Best Choice, Is It a Choice at All?

Disabled Canadians need support, but without proper government funding, voluntary death through MAID may be their only option.

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As long as someone places Michal Kaliszan’s hands on a keyboard and a mouse, he has enough strength and dexterity to use a computer. Once his hands are there, the 40-year-old software developer at Blackberry can start his workday. But for anything else—”personal care, activities, and daily living”—he needs someone’s help.

“I need people to be my arms and legs, to help me with physical tasks,” he says. Kaliszan has spinal muscular atrophy, which has caused his muscles to weaken over time. With the help of physical support, he lives alone in the house he grew up in, in Cambridge, Ontario, west of Toronto.

In October of last year, Kaliszan’s mother died, upending his life, as she was his primary caregiver. When we first spoke, on March 1, Kaliszan was dreading the end of that month, when he would lose the help of a relative who had stepped in after his mom’s death. His uncle had been living with him to provide care, but he was set to return to his home in Poland on March 30. Kaliszan faced a predicament: How could he live his life as he always had without a family member by his side?

Assistance programs provided by the provincial government of Ontario had given Kaliszan 41 hours of personal support each week, or nearly six hours a day—almost the maximum level of care the government will provide to someone in his situation. But Kaliszan needs overnight care as well. When his mother went into palliative care and could no longer help him, he started a GoFundMe to try and raise almost $800 a day to fund the nearly around-the-clock care he needs. He raised almost $70,000—a significant sum, but still not enough to last even three months.

Personal fundraising is one of Kaliszan’s options, but he has several others. He could push for more funding from the government, which he’s unlikely to get, as it would place him outside of what the program promises people in his situation. Alternatively, he could move into an institution where a portion of the fees are covered by the provincial government. Or he could take the route that he fears is his best choice: He could access Medical Assistance in Dying (MAID) and ask a doctor to help him end his own life.

Medically assisted suicide has only recently become an option for Kaliszan. In March 2021, as Canadians were riding out a surge of Covid-19, Canada’s Parliament passed the most significant change to the country’s health care policy in a generation—what is colloquially known as “expanded MAID.” MAID became legal in Canada in 2016, after its Supreme Court ruled that criminalizing assisted suicide was a violation of Canadians’ charter rights. But it explicitly excluded three groups of people: individuals whose deaths were not what the policy calls “reasonably foreseeable”; those who were primarily suffering from mental illness; and children. Through expanded MAID, any adult, so long as they have “a grievous and irremediable medical condition” that affects their quality of life, can ask a doctor to help them die by suicide. Their medical issues don’t need to be terminal, and they don’t need to be close to the end of their life to choose MAID. Kaliszan’s muscular dystrophy would likely make him a candidate for MAID, and he’s prepared to request the first step toward being approved.

Though disability activists have long been critical of how MAID was implemented and have warned that there weren’t enough safeguards to protect vulnerable people from accessing it prematurely, the expansion of MAID set off a nuclear bomb in the disability justice community. Trudo Lemmens, a professor of health law and policy at the University of Toronto, says that expanded MAID is rooted in “profound ableism,” guaranteeing people more access to suicide than to the care they need to live. It has profound implications for marginalized people, who often experience a higher rate of poverty and disability, Lemmens says. In his eyes, Canada offers the most permissive access to MAID in the world. Whereas euthanasia is seen as a last resort in Belgium and Holland, he says, Canadians can apply and be approved for MAID before trying other treatment options. He sees this as “deeply troubling.”

The number of individuals seeking MAID in Canada has risen steadily each year since it was legalized in 2016. In 2021, 10,064 people sought MAID to end their lives. Of these, 43 percent required disability support, but only about 4.2 percent of those reported that they lacked access to the resources they needed. For about 2 percent of these people, death was not “reasonably foreseeable,” which Canada’s Department of Justice defines as “a real possibility of the patient’s death within a period of time that is not too remote.” While the increase in the number of people accessing MAID was likely related to the increasing awareness of it as an option, there’s no doubt that the stories of people in long-term-care institutions dying from dehydration, languishing in soiled bedsheets and diapers, and lacking control over who they were allowed to see were powerful disincentives for individuals to move into such institutions.

“MAID fits in as an option of last resort,” Kaliszan says. “It’s not something that I’m happy with, but I did request to do at least the first MAID assessment. Once my current level of support runs out—[if] my situation doesn’t look like 
it’s going to change for the better—I don’t know how long I’ll be able to last sitting in soiled diapers day in and day out. I previewed that kind of lifestyle while my mother was in hospital.”

While MAID is not Kaliszan’s preferred choice, neither are living full-time in an institution or obtaining the money through fundraising. In an ideal world, he’d have a fourth option: fully funded government support in the form of day and night care in his home.

Currently, to hire care workers, Kaliszan accesses Direct Funding, a program coordinated by Ontario’s Ministry of Health to help disabled people select and manage care staff directly. The ministry provides money to pay staff wages. But Direct Funding has a waiting list, a cap on its funding, and isn’t intended to fund 24-hour care. Kaliszan is competing for resources with others who need them. As of March, there were 550 people on the waiting list for Direct Funding services. Leisa DeBono, a senior program manager for Direct Funding, says that despite the waiting list, the program would do whatever it could to support someone who asked for help: “In exactly the same way that we would support people not to go into some kind of managed facility like a long-term-care facility, we would also support people who needed more services because they felt like they could not survive without it and that MAID was their only option.”

After his mother’s death, Kaliszan made a request to Direct Funding to increase his support. The request will take between 18 and 24 months to be reviewed, but he doesn’t have much hope that it will be approved. He says that this level of care is usually reserved for people who use machines like ventilators, which he does not. He fears being pushed into long-term care, a quasi-public system of institutions that mostly houses people close to the end of their lives. Long-term care “is a one-way street,” he says. “You go in [and] life as you know it is over. You work on their schedule. There’s no privacy to carry on working in a professional environment.” This fear of losing his independence, along with the home he’s lived in forever, is a big part of what pushed him to consider accessing expanded MAID.

The Covid-19 pandemic made the already fragile medical system in Canada even worse. Michael Hurley represents health care workers in Ontario who are members of the Canadian Union of Public Employees. He says that hospitals pushing people out early has strained the limited pool of home care workers. The increasing complexity of the health issues being treated at home has meant that “there’s increased competition between patients or clients or residents for attention and support,” Hurley says. “These factors play out to the detriment of the person who needs the care.”

On February 7, Canada’s Liberal government announced a new funding package for health care. But the only change that would improve the quality of life for those with disabilities or chronic illnesses is the $340 million in annual funding for Canada’s 13 provinces and territories to raise personal care workers’ wages—likely because, as Hurley says, there are more of those workers leaving than coming in.

Before the pandemic, Kaliszan received 22 hours of care per week from a public agency, in addition to his mother’s help. But when Covid hit his area, he pulled back on most of those public services to reduce the number of people coming in and out of the house. He attempted to reinstate them when his mother got sick, but he was told that only 10 hours were available. The reduction took a massive toll on his quality of life, hastening his routines and requiring him to go to bed at arbitrary times. But it was still better than ending up in a long-term-care facility. The unanimous message from advocates and health care workers about those facilities is “do everything you possibly can to avoid them; avoid them at all costs,” Kaliszan says. During the pandemic, long-term-care institutions became Covid-19’s ground zero, as more than 22,000 Canadians died after being infected in them.

In March 2024, the Canadian government plans to extend MAID to cover people with mental illnesses. This will give mentally ill Canadians a legal path to suicide if the government deems their condition “grievous and irremediable.”

Sean Krausert, the executive director of the Canadian Association for Suicide Prevention, says that his organization has become involved in the advocacy against expanded MAID. “In an environment in which the health care system is stressed and under-resourced, and when there is absolutely zero scientific evidence that mental disorders are irremediable, the first step from the government in providing relief to those who are truly suffering terribly from mental disorders [should be] to increase the treatment and medical resources available to them,” he says. Currently, less than 7 percent of Canada’s health care funding goes to mental health resources. (As of 2016, behavioral health spending in the United States accounted for approximately 6 percent of the health care budget.)

“To offer this group of people the option to take their lives when they’re at their worst, when they are advised to not make any serious life decisions in any other regard? It does not make any sense on any level,” Krausert says. “It’s only going to result in the premature deaths of people who otherwise could have had a better life—and grief for their families and friends.”

With every expansion of MAID, the most vulnerable people—particularly those who are poor, disabled, LGBTQ+, or people of color—become more likely to seek it. “I think there’s more and more awareness…that there is an issue here of discrimination,” says Lemmens. As of 2017, 6 in 10 disabled Canadian adults living without family members were low-income. Many of them are unable to afford the care workers, medical supplies, home renovations, or accessories that are necessary to keep them alive, according to Easter Seals, a nonprofit that provides services for people with disabilities. In Ontario, disability income support payments max out at $14,028 a year, an amount that leaves people about $6,000 below the poverty line. As Kaliszan’s situation demonstrates, if there’s insufficient money to fund the care that enables people to live with dignity, they may feel forced to pick suicide.

Indigenous women are at an especially high risk of being pushed toward expanded MAID. In May 2022, a report released by the office of Senator Kim Pate identified 12 Indigenous incarcerated women who, Pate suggested, should immediately be released from custody. Pate told the Toronto Star that two of the women featured in that report had requested MAID “because they believe they will never get justice.” In April, the Aboriginal Peoples Television Network reported that from 2016 to March 2022, nine inmates in federal prisons chose MAID to end their lives and that “some” were Indigenous men.

If the planned expansion of MAID to those suffering from mental illness isn’t alarming enough, a parliamentary committee has recently recommended that MAID be expanded to include minors. According to these guidelines, minors will be allowed to access MAID only if their death is “reasonably foreseeable” and it has been determined that they are mature enough to make the decision for themselves. If so, they will be able to access MAID without parental consent. The parents or guardians of a minor should be consulted during the course of the assessment process, the committee holds, but the will of a minor who is found to have the requisite decision-making capacity ultimately takes priority.

The committee believes that the program of expanding MAID to children needs more research, so it has recommended a plan to “undertake consultations with minors on the topic of MAID, including minors with terminal illnesses, minors with disabilities, minors in the child welfare system, and Indigenous minors, within five years of the tabling of this report.”

When I told Michal Kaliszan’s story to Lemmens, he said that while Canadians are becoming more aware of the discrimination it reveals, the MAID lobby is powerful. Dying With Dignity Canada, the most vocal national organization supporting MAID since before it was made legal, has a patrons’ council that amounts to a who’s who of Canadian business and cultural icons, including Margaret Atwood, Richard Ivey, Moses Znaimer, and two former senators.

Dying With Dignity supports the expansion of MAID to people whose sole medical condition is mental illness, and it is pushing politicians to allow access to MAID even before that condition deteriorates or becomes severe. On June 7, the National Assembly of Quebec voted to expand MAID. The new law is intended to give people who face cognitive decline the ability to make their decision in advance of that decline.

Perhaps the most concerning decision of the parliamentary committee is the one to consult with Indigenous children and those who live in state care. Indigenous children, whether they live with their parents or in state care, have very high rates of suicide. The suicide rate for some First Nations children under 15 can be as much as 50 times the rate for non-Indigenous children. Indigenous children and children in foster care have higher rates of disability as well. These compounding factors raise the stakes considerably if the government decides to extend MAID to children.

Even though the vast majority of Canadians who have chosen MAID thus far were deemed to have had “reasonably foreseeable” deaths, government data indicates that those who accessed MAID suffered from a declining quality of life and an overall lack of social support. More than half said that they experienced or were afraid they would experience pain, but even among this group, 86 percent cited not pain but a “loss in the ability to engage in meaningful activities” as the most prominent description of their distress. Nearly one-third said that they perceived themselves to be a burden on others. If this is how the people who chose MAID described the suffering that prompted them to end their lives, why aren’t the federal and provincial governments making it easier for people to live well as long as their bodies allow?

At a press conference hosted by the disability Justice Network of Ontario on March 15, Kaliszan spoke about what it was like to lose his father to cancer in 2001. While it was devastating, he and his mother formed an important bond that enabled them to survive. “We were facing uncertain times ahead, but I never once felt any fear for the future, because I knew that together we would make it through whatever may come,” he said. “Now that I am alone, I am afraid. As my choices dwindle down to MAID or subsisting in indignity, I am truly terrified that I will choose to end my life.”

On March 31, I asked Kaliszan how he was doing. His uncle had flown out the night before, but Kaliszan had just received some good news: The public support and attention that he’d received from his GoFundMe reached agency officials, securing him a temporary solution. “It was down to the wire waiting for the key players to take [a] real interest,” he told me via e-mail. The interim plan would allow him to stay in his home, he added, but “a long-term commitment still had to be confirmed.” By mid-May, though the temporary plan remained in effect, he was still fighting for a permanent solution.

“The indignity of it all is just overwhelming,” Kaliszan said. “The question should be: Why is a disabled person considering [MAID] simply on the basis that they can’t get the support services they need?” The answer from the Canadian government at this point seems clear: It’s easier to expand MAID than to give disabled people the support they need to live long and fulfilling lives.

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