When it comes to Bill C-7, which expanded the criteria for medical assistance in dying (MAID), Dr. Jonathan Reggler is unequivocally in favour.
“It comes down to autonomy and whether a person should be allowed the ability to exercise autonomy,” says Reggler, who is co-chair of the clinicians’ advisory council for Dying With Dignity Canada, a group advocating for people’s rights to MAID.
“There are people who suffer intolerably from long term conditions who do not wish their lives to continue … I and the majority of the MAID assessor and provider community, and the majority of Canadians, think [Bill C-7] is a good thing.”
David Lepofsky, a law professor at Osgoode Hall, disability rights advocate and former crown prosecutor, also has strong opinions about the bill. But he disagrees with Reggler.
“It’s the social safety net that they wrap around your neck and pull until you stop breathing,” Lepofsky says. MAID allows patients suffering from terminal medical conditions to ask a doctor to administer a lethal dose of medicine. The practice was first legalized in Canada in 2016 after a Supreme Court ruling the previous year, and since then the number of Canadians opting for it has been rising steadily.
As of 2016, the law allowed only patients who were dying of their conditions to request MAID. But Bill C-7, passed in March 2021, broadened the criteria to include what doctors refer to as “Track Two” patients: those not likely to die in the near future but afflicted with an “illness, disease or disability or … state of decline [that] causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable.”
It also contains a time-delayed exclusion for those suffering only from mental disorders, which will make them eligible next March, pending discussion by a parliamentary committee.
According to a 2021 IPSOS poll commissioned by Dying with Dignity Canada, the majority of Canadians—83%—agree with Reggler that assisted death for those with “grievous and irremediable” conditions is a good thing, and 65% support extending it to those suffering only from mental disorders. But a vocal minority, including Lepofsky and his contacts in the disability rights community, have grave concerns. Meanwhile, the changes to the law have some Canadian Anglicans asking whether and how the church should respond.
Emphasizing pastoral care over opposition
“We’re unusual among the mainline churches, many of which have taken an absolute negative stance,” says Archbishop Linda Nicholls, primate of the Anglican Church of Canada. “We’ve had Anglicans who have been very vocal in their public support for [MAID].”
Rather than opposing MAID, the most recent document the church published on the subject, 2016’s In Sure and Certain Hope, took an agnostic position, putting the emphasis on ministering to those who choose to access it. It laid out guidelines for clergy to provide pastoral care for parishioners who were going through the process of physician-assisted death. It also, Nicholls notes, asked questions about what realistic alternatives patients have available.
“Before you can really talk about this, we have to talk about the alternative. Is there access to adequate palliative care so people don’t feel the easiest route is medically assisted death? If the discernment is in the hands of the individual, do they have a choice that is fair and supported?” she asks.
The expansion of eligibility for MAID, says Lepofsky, raises a whole new set of concerns with his contacts in the disability rights community—many of whom were already deeply skeptical of MAID to begin with. They believe the debate has frequently been framed through questions about quality of life, which they consider to be at best condescending and at worst discriminatory to those with disabilities, he says. In Lepofsky’s view, MAID has run amok. And he fears that as Bill C-7 rolls out, things will get dramatically worse.
“If you were in a psychologist’s office and said ‘I’m thinking of killing myself,’ they’d take you to the hospital emergency room,” he says. “You wait hours and hours, and if you’re lucky you get a prescription for some drug which takes weeks to kick in if at all, and then get told you can go to a psychiatric care clinic but the waitlist is months. What will happen next year is that the hospital would say we have another option that we can also provide. And that is, we can kill you.” Currently, assessments for track 2 patients are required to take at least 90 days.
Health care, disability assistance, counseling and dozens of other social services can take months or years to access, says Lepofsky. He cites the case of 51-year old “Sophia,” an Ontario woman who suffered from multiple chemical sensitivities and needed to leave a home that was aggravating her symptoms. After two years of attempting to get housing assistance from the government, “Sophia” eventually gave up and requested a medically assisted death. A doctor killed her on Feb. 22.
“The only people this targets are people with disabilities who are suffering,” Lepofsky says. “We need a lot more effort on how to make life worth living with disabilities, not a lot more effort on making people die instead of living with their disabilities.”
While Reggler agrees with Lepofsky’s point about the inadequacy of palliative, mental health and disability supports, he believes Lepofky’s conclusion is backward. If society is going to decide by way of the politicians it votes into power that it’s not willing to shoulder the tax burden of providing the money and help needed to help disabled people live a decent life, he says, it has no right to then force them to go on living with a level of poverty and suffering that they consider intolerable.
“We should not require people to live with intolerable suffering because we haven’t put in place the things they need to get to where they don’t need [MAID],” he says.
Still, says Lepofsky, even if the intention is to provide a humane alternative to being trapped in an untenable situation, the result remains the same.
“The thing we’ve learned in the disability rights world: It’s not the intention that matters. The people who built buildings with stairs instead of ramps, we don’t have to prove that they conspiratorially said, ‘We’re going to keep people in wheelchairs out,’” he says; whether it’s meant to or not, the effect C-7 has is to expedite the deaths of people with disabilities.
Poverty as ‘intolerable suffering’
One of the authors of In Sure and Certain Hope, Canon Douglas Graydon, spent much of his career ministering to patients who were dying of AIDS, including 12 years as a chaplain at Casey House hospice. That ministry gave him experience in end-of-life care and an understanding of why some patients would end things on their terms rather than let an illness drag out their death. Graydon says he was one of the voices in the church calling for greater acceptance and compassion for MAID as a result. His conviction, he says, was buttressed by his satisfaction that the law as it stood when In Sure and Certain Hope came out contained clear guidelines for when MAID was appropriate and a set of safeguards to help doctors evaluate whether patients were making a free and voluntary decision.
“Overwhelmingly, if individuals who were in a palliative state got adequate palliative care—pain control medication and resources to keep their interaction with loved ones, family friends—the issue of ending one’s life diminishes significantly.” he says. That fact satisfies him that so long as patients’ other needs are met, only those who are really facing intolerable suffering are likely to choose MAID.
However, hearing Lepofsky’s concerns about Bill C-7, he acknowledges there may be reason to be concerned about the new legislation.
“The number of people in Toronto who are on disability income and talk endlessly about how they don’t have enough money to make it to the end of the month, and so they’re dependent on food banks … Does that impose a level of suffering on their lives, that they would prefer not to live with their disability and end their life because we as a society have determined they’re not worthy of sufficient resources to ensure a quality of life?” he says. “Part of that request is the sound of desperation that the state or the community are just either unwilling or unable to respond in the way they need to to ensure that quality of life.”
Informing patients of their options
One difficulty is in guaranteeing that patients hear about what is available to improve their quality of life, Lepofsky says. The law requires that patients have seriously considered any alternatives to MAID that might alleviate their suffering. But he says there is insufficient stipulation about who has to inform them of their options, what specific information they have to hear—and more troublingly, no requirement for a review process.
“Doctors aren’t trained in what to say, they may not know the social safety net or what rehabilitation resources are out there. They’re doctors. I’m not faulting them—this is not what they’re trained to do. But not only that, we have no safeguard on what the [patient] was actually told. And by the way, the only person who can attest to this is dead afterward!” he says.
But standardizing what alternatives MAID assessors and providers must go over with their patients isn’t as simple as it sounds, says Reggler. First, there’s the problem of what alternatives a practitioner would be required to offer.
“If you try to create an exhaustive list of all of the alternatives that a MAID practitioner has to offer before a patient is allowed to go ahead—exhaustive lists go out of date very quickly,” he says. “If it’s supposedly exhaustive and leaves something out, that creates room for a potential problem.” The second big issue is whether all the items on the list are actually available to patients across Canada, given the acknowledged overtaxing of social, mental health and palliative care.
“I can imagine [a requirement that] the patient be seen by three psychiatrists and two of the three have to agree. But I can’t get a patient in front of one psychiatrist. The waiting list is more than a year. Do we prioritize MAID [ahead of the psychiatrists’ other patients]?” Not to mention the question of whether funding is available for all the services that might possibly reduce a patient’s need for MAID.
The law requires that the patient and two independent practitioners agree the patient has given serious consideration to the alternatives available to them, says Reggler, meaning he and a colleague are typically responsible for discussing them with a patient and recording that information in their chart.
“The very last thing I want to do is end the life of someone whose life need not be ended,” said Reggler. “My biggest thrill comes when I tell a patient about a thing that could be done instead of [MAID] and the patient says ‘Wow, I didn’t know about that.’” But Lepofsky insists leaving doctors to create their own responsible practices leaves the door wide open to mistakes. “We do have a very vigorous system in place for taking away your liberty with your consent. It’s called a guilty plea. You are agreeing that a court can sentence you, including prison. Before you can have a guilty plea, you have to go to a public trial, plead guilty in open court, there must be independent legal advice. A judge cannot accept your guilty plea unless they are satisfied it’s voluntary. There’s all sorts of law about this,” he says. “For taking away your life, it shouldn’t have less safeguards.”
While he disagrees with Lepofsky on doctors’ competency in offering and evaluating alternatives with patients, Reggler does see room for additional accountability in the system. For example, he has heard some colleagues recommend a board of medical and potentially psychological, social service or legal experts to whom doctors can bring cases of MAID for final approval before a patient’s death.
Like Reggler, Graydon says there is no reason the legislation should not continue to be refined. In fact, he says, part of his goal when working on In Sure and Certain Hope was that the document would begin an ongoing conversation about the sanctity of life and how best to guard it. He says he’d like to see the Anglican Church of Canada continue to participate. “There was always meant to be an In Sure and Certain Hope 2, and 3 and so on,” he says. “This is a critical area of discussion and I’d hate to see the church abandon it.