This article contains discussions of suicide. If you or someone you know is having a suicide crisis, please call Talk Suicide Canada (1-833-456-4566), which offers 24/7 support. There is also the Hope for Wellness Helpline for Indigenous people across Canada (1-855-242-3310).
Iwish my grandmother had been offered a medically assisted death. I know she would have chosen it. In 2014, I spent a month watching her die in palliative care following a terminal cancer diagnosis. We listened to Czech opera, and she kept a photo of her sister by her morphine drip. When volunteers asked if she wanted to play bingo with other patients in the common area, she said, “No, I am trying to die.”
Two years later, medical assistance in dying (MAID) was legalized in Canada for those with foreseeable deaths. At the time, I assumed the legislation would simply give suffering people a way to die on their own terms. But then, in 2021, it expanded to people whose conditions aren’t terminal, and this March, it’s set to become available to those whose sole condition is mental illness. The government is considering extending eligibility even further, including to mature minors.
One way to understand these expansions is to follow the work of Dying with Dignity Canada, an organization that describes itself on its website as a human rights charity committed to helping Canadians access “end-of-life choice and care.” Its offerings include downloadable guides for those seeking to apply for an assisted death, webinars on topics such as how to educate clinicians about MAID, and Q&As with various medical and legal experts on topics that include further expanding the legislation. In various media reports, spokespeople often call assisted death a fundamental human right, and the organization presents itself in communications materials as an advocate for patients’ rights to quality end-of-life care. “It’s about truly ensuring that people have choice at end of life regardless of what that choice is,” says CEO Helen Long.
Dying with Dignity Canada isn’t just a charity; it’s also the country’s biggest pro-MAID lobby group. Theoretically, lobby groups are meant to allow for the interests of all stakeholders to be represented to the government. But when a lobby group is so well funded that it wields disproportionate power over a debate, the voices of less powerful parties can be neglected. Some critics believe public conversations around MAID are skewed in Dying with Dignity Canada’s favour. And when it lobbies to expand access to assisted dying, few have the resources to push back.
Dying with Dignity Canada is a member of the World Federation of Right to Die Societies, an association of fifty-eight organizations from thirty countries that was established in 1976. Marilynne Seguin, a registered nurse, helped co-found Dying with Dignity Canada in Toronto in 1980. It was registered as a charity two years later, with a mandate to educate Canadians about assisted dying. At the time, the organization was run entirely by volunteers.
In 1994, one year after a landmark Supreme Court case ruled against decriminalizing assisted suicide in Canada, Seguin published A Gentle Death, a book she co-authored with Cheryl K. Smith, at one time the deputy director of the Hemlock Society, an American right-to-die organization. The text lays out case studies of elderly people, mostly women, who wanted access to medical euthanasia due to their physical suffering but were unable to receive it. This framing is consistent with Dying with Dignity Canada’s messaging. It tends to depict the typical recipient of assisted dying as “a white, middle-class granny,” says Tim Stainton, professor of social work at the University of British Columbia. The implicit question, he says, is “‘Do you want granny to suffer?’”
The organization’s activities ramped up in the 2010s as legal challenges to the criminalization of medically assisted death gained momentum—due in part to Dying with Dignity Canada’s own campaigning. Donations to the organization also began to rise, more than doubling from $396,000 in 2013 to $946,000 in 2014. Between 2012 and 2014, the group opened eight more chapters around the country. In 2014, it financed a survey, conducted by Ipsos, which found that 84 percent of Canadians supported MAID for adults with terminal illnesses.
In February 2015, the Canada Revenue Agency annulled Dying with Dignity Canada’s charitable status. Citing “serious non-compliance issues,” the CRA reported that “our audit did not identify any activities advancing education in the charitable sense.” Dying with Dignity Canada focused on “selectively informing the public in support of its political purpose to expand choice in dying.” Speaking to the Globe and Mail that January, then CEO Wanda Morris said the advocacy group had been constrained by its charitable status; now the organization could finally be “overtly political.”
That same year, the Supreme Court invalidated the absolute prohibition on medical assistance in dying in the landmark Carter v. Canada decision, which ultimately paved the way for MAID legislation. Dying with Dignity Canada, at that point often referred to in media reports as an advocacy group, was an intervener in the case, arguing in favour of assisted dying.
In 2016, the government introduced Bill C-14, which would legalize medically assisted death for adults with foreseeable deaths. That year, Dying with Dignity Canada lobbyists met with public officials in Ottawa four times. In at least one instance, the stated purpose was to discuss Bill C-14. Morris, who by then had left Dying with Dignity Canada to become COO and vice president of advocacy at the Canadian Association of Retired Persons, served as an expert witness for the government for C-14. But even though the bill passed, Dying with Dignity Canada’s work was not done.
In 2018, Dying with Dignity Canada received a donation of $7 million from the late Vancouver entrepreneur David Jackson, an amount that’s been described as transformational. “Being handed 7 million without having to spend any money raising it would make any group [a] top lobby group [in Canada] right away on any issue,” says Duff Conacher, co-founder of Democracy Watch, a democratic reform and corporate responsibility advocacy group.
That year, the Supreme Court had thrown out the stipulation that to receive tax-exempt status, charities could direct only 10 percent of their funds toward political purposes. As a result, Dying with Dignity Canada had its status as a charitable organization reinstated, meaning it was eligible for government funding.
Dying with Dignity Canada began organizing panels featuring legal experts and doctors discussing how MAID eligibility could be extended to people whose deaths weren’t foreseeable. It has also hosted more than eighty webinars for the public and health care professionals on various aspects of MAID; some include personal testimony from people who chose MAID and interviews with guests such as then minister of justice and attorney general David Lametti, with whom Dying with Dignity Canada reported it had “ongoing interactions.”
In Truchon v. Canada (2019), the Quebec Superior Court declared unconstitutional the requirement that MAID applicants’ deaths be reasonably foreseeable. This ruling would eventually make it possible for people who weren’t dying to receive MAID. Trudo Lemmens, professor of law and bioethics at the University of Toronto, served as an expert witness for the government in the case. He has argued that overly permissive legislation might lead to the approval of assisted death requests motivated in part by factors such as inadequate care or structural poverty. Etienne Montero, a bioethicist and expert on euthanasia in Belgium, where the process was already legal, made the same argument, warning that legalizing assisted death could lead to what he described as a slippery slope.
In 2020, Dying with Dignity Canada registered with the federal government as a lobby group while still being recognized as a charity. The group sent Health Canada a letter proposing amendments to regulations, issued in 2022, for how to monitor and document MAID deaths. Dying with Dignity Canada also provided input to the Parliamentary Special Joint Committee on Medical Assistance in Dying (AMAD), which submitted a report in 2023 that reviewed key issues related to assisted dying, including the possibility of expanding eligibility to mature minors and people with mental illness.
Lemmens says that, having worked in his field since the early 1990s, “I don’t know of any bioethics debates . . . where the government have felt so comfortable appointing or basically promoting the view of specialists associated so directly with a lobby group in favour of one side of the issues.”
“Lobby groups and advocacy groups are obviously part of the political landscape,” Lemmens says. But a healthy democracy, he continues, requires “a certain distance between interest groups and decision makers.” Dying with Dignity Canada “established strong connections in the political and medical establishment,” he says. “Their strong funding base has enabled them to have a disproportionate impact on the legal developments and the public discourse.”
“If you want to run a democratic government,” says Conacher, “you ensure there’s public funding to correct that imbalance so that all voices can be heard.” Long tells me her organization is usually the only one advocating for MAID expansions. “We all have to follow the same process, so we all have the same opportunities to speak to government or to be part of the legislative process.”
Dying with Dignity Canada’s predominant political focus in 2020 was promoting Bill C-7, which would legalize assisted death for those with non-terminal illnesses and disabilities. In its campaign, the group sent over 50,000 letters to members of Parliament and hosted seven informational webinars on the bill which were attended by a total of 3,750 people. Its public records list nineteen communications with government officials that year, with subjects such as “Bill C-7” and “Five year review of Medical Assistance in Dying Legislation . . . with respect to advance requests, mature minors, and mental illness.” (The monthly communications reports filed by lobby groups have to disclose only pre-arranged oral communications and do not capture virtual correspondence or conversations that do not fall under that category.) In its 2021 annual report, Dying with Dignity Canada noted that some of its leaders had been invited to a roundtable on MAID with Carolyn Bennett, then minister of mental health and addictions, and Marco Mendicino, then minister of public safety. Bill C-7 passed in March 2021.
Since then, there have been alarming media reports of people with disabilities applying for assisted death because they experienced poverty and had no viable options for living, a situation disability groups had been warning about for years. Studies have repeatedly shown that some MAID applicants are driven by squalid conditions in long-term-care homes, homelessness, lack of access to appropriate care, and insufficient disability welfare. During AMAD committee hearings, some disabled activists, doctors, and nurses said they had personally seen people apply for assisted death due to material privation and insufficient access to health care. It is sometimes the case that even if those applicants are approved for MAID based on their physical health, it may be their lack of financial and health care support that drives them toward this option.
But representatives associated with the MAID lobby continued to argue that access to assisted death for anyone with a chronic or terminal medical condition is an essential liberal right, and that excluding people from MAID eligibility on the basis that their deaths were not foreseeable was discriminatory. Dying with Dignity Canada’s website includes a post that lists myths and facts about MAID; the allegation that vulnerable people are eligible for MAID on the basis of insufficient social and financial supports is listed as a myth. Below it is a listed “fact”: “Suffering from a lack of social supports does not qualify a person for MAID. No one can receive MAID on the basis of inadequate housing, disability supports, or home care.” This is, strictly speaking, true, but many disabled people have testified that while their disability makes them eligible for MAID, their reason for acting on this eligibility is poverty. (In an email, a Dying with Dignity Canada spokesperson wrote that “what we maintain is that those found eligible for MAID meet all the rigorous criteria including that they have a grievous and irremediable medical condition. Our 2024 pre-budget submission urged the government to increase mental health, disability and housing supports.”)
A recent Al Jazeera Fault Lines documentary tells the story of forty-one-year-old Rosina Kamis, who taught statistics at a university. Diagnosed with fibromyalgia in her twenties, she eventually had to stop working and began relying on government support. “I can’t believe it’s so easy for me to get MAID,” she wrote in an email that appears in the documentary. In another email to a friend, she confides that “the suffering I experience is mental suffering not physical.” She explains in the email that part of the reason for her application was her exhaustion related to the health care that she needed, her poverty, and her feelings of isolation. “I think if more people cared about me I might be able to handle the suffering.” Kamis died by MAID in September 2021.
“As far as we’re concerned, there is no evidence that MAID has been delivered inappropriately,” says Long when I bring up situations of people applying because of systemic inequities, “and the conditions that you outlined are not conditions that make one eligible for MAID.” She adds that there are sufficient safeguards in the application process that screen against coercion.
Pro-MAID lobbyists often characterize palliative care, the medical specialty dedicated to improving patients’ quality of life, often in the face of chronic or terminal illness, as one such safeguard. The thinking goes that patients with chronic or terminal conditions still have the option to receive care that enhances their quality of life, thus alleviating their suffering, until they die a natural death; those who can no longer bear their agony can choose to turn to MAID. This framing has led to a perception that MAID is an offshoot of palliative care. But research the Canadian Society of Palliative Care Physicians (CSPCP) carried out in 2015 found that palliative care could not be reliably depended on as a safeguard for MAID because it was underfunded and underresourced. At the time, nearly 80 percent of Canadians in urban areas had access to palliative care; that figure fell to about 35 percent in some rural and remote areas. The CSPCP expressed concern that Canada did not have sufficient social infrastructure in place for MAID to be legalized safely. (A 2023 report from the Canadian Institute for Health Information found that while the number of people accessing palliative care has risen in recent years, “there are still signs of poor-quality palliative care, including people not getting palliative care until just before they die.”)
In 2015, Susan MacDonald, then president of the CSPCP, told Canadian Medical Association Journal that medically assisted death should not be classified under palliative care. Her concern was that ending life was in contradiction with the philosophy and practices of palliative care, the purpose of which is enhancing care for patients. This view, says Leonie Herx, a palliative care practitioner and professor of medicine at Queen’s University, is consistent not only within Canada but in international associations for hospice and palliative care. “Lobby groups like Dying with Dignity [Canada] get these very loud spokespeople who are representing a very different view to the vast majority of palliative care clinicians and [use] that in their marketing strategies,” says Herx. Dozens of Dying with Dignity Canada’s webinars include guest interviews with palliative care physicians and nurses who express the view that offering MAID is part of palliative care. One consequence of this apparent integration is that some practitioners are noticing more hesitancy among patients to seek out palliative treatment because they are worried they will be offered MAID.
Meanwhile, some palliative care professionals feel increasingly ignored by the government. While appearing before the AMAD committee, Long split her five-minute testimony with former Canadian senator James Cowan, who retired from the Senate in 2017. But neither of the two national Canadian palliative care organizations was invited to speak.
Dying with Dignity Canada’s exceptional influence is a function of how well financed it is. Some of the lobby organization’s donors have included TD Canada Trust, Rogers, Google Ads, Mackenzie Investments, Telus, Sun Life Financial, RBC, and Pfizer. (Pfizer also makes three of the drugs recommended by the Canadian Association of MAID Assessors and Providers to facilitate MAID.) As a charitable organization, it received $222,077 in government assistance in 2020 and $204,655 in 2021, according to Charity Intelligence Canada. The Canadian Association of MAID Assessors and Providers (CAMAP), an organization founded by a member of Dying with Dignity Canada’s advisory council, received $3.3 million for the development of MAID training modules. In 2022, the Temerty Faculty of Medicine at the University of Toronto appointed a Bresver family chair in end-of-life care and medical assistance in dying, a new departmental role addressing both palliative care and MAID. The position was financed by a $1 million donation from Barbara Bresver, director-at-large of the GTA chapter of Dying with Dignity Canada.
By virtue of its financial resources, Dying with Dignity Canada has a higher degree of access to politicians than most palliative care workers or activists are able to get. It works with prominent PR firms such as Blackbird Strategies and, previously, Impact Public Affairs. From 2022/23, representatives of Dying with Dignity Canada have registered thirty-five pre-arranged oral meetings with politicians in Ottawa to discuss topics such as expanding eligibility for MAID.
In comparison, national palliative care societies are NGOs mainly funded by the membership fees clinicians pay. “If you have paid staff, people have time and that’s their focus, whereas we’re all just busy trying to take care of patients and do the best we can off the sides of our desks,” says Herx. Dying with Dignity Canada has fifteen permanent paid staff members at its headquarters, thirteen people on its board of directors, five advisory councils, and ten local chapters, each with its own chair and volunteers. For disability activists, the power differential is even more extreme. Some of the activists trying to resist MAID expansions are concerned about becoming homeless. The MAID lobby, says Stainton, has “more to run this single issue than all the disability organizations in the country have to do everything they do.”
Dying with Dignity Canada continues to campaign for further expansions; its website lists “current priorities” that include making MAID available to people whose sole condition is a mental disorder. In communications with the AMAD committee, it includes expanding MAID to “mature minors” age twelve and older among its goals. “Mature minors can already make health care decisions that may end in a death,” says Long, referring to the right some children have to refuse treatment for conditions such as cancer. Dying with Dignity Canada is advocating for offering MAID to minors “in cases where death is reasonably foreseeable,” she says.
It’s not clear where the organization would draw the line for who should have access to MAID. In 2022, MAID accounted for 4 percent of deaths in Canada, a 30 percent increase from the previous year. The total number of Canadians who died by MAID due to non-terminal conditions doubled in this time. Dying with Dignity Canada’s website says it anticipates the 2023 numbers to be even higher “as education spreads and access becomes less limited.” When I ask Long if Dying with Dignity Canada would consider advocating for mature minors to be eligible for MAID solely on the basis of mental illness in the future, she says it’s not currently on their agenda: “I mean that’s so far down the road. I don’t know.”
The organization’s communications materials tend to employ language that suggests it is advocating on behalf of the marginalized, referring to an “inclusive approach” that looks at death “through the lens of diversity, anti-racism and anti-oppression.” Recently, its blog featured a post titled “Understanding MAID and the 2SLGBTQIA+ experience,” offering “a space for 2SLGBTQIA+ people to discuss MAID in the context of insufficient social infrastructure.”
Meanwhile, Dying with Dignity Canada has responded to questions from disabled advocates with statements that are “very pro-MAID while dismissing the negative effects,” says Mitchell Tremblay, a disability advocate and host of The #Pwdcast. (He also appears in the Fault Lines documentary.) He says he talks to people every day who feel coerced into applying for MAID because it has become one of the only ways to escape poverty, homelessness, bad treatment from landlords, and the feeling that the government doesn’t care about them. “We want safeguards, proper mental health, addiction, and housing support,” says Tremblay. “So that MAID isn’t the better option for so many.”