Barriers To Care Persist But Access To MAiD Keeps Expanding: Ramona Coelho For Inside Policy
Our government has allowed the incredible power of certain lobby groups to control the public discourse and policies around MAiD and its expansion, prioritizing access to MAiD over the safety of Canadians, writes RAMONA COELHO.
My family medicine practice serves predominantly low-income and marginalized patients, including refugees, those who have been in our prison system or are facing charges, and many with disabilities and mental health issues. My patients experience high barriers to care and support and face social isolation and all kinds of discrimination. Observing the impacts of this has left me deeply concerned about our government’s priorities.
When the federal government introduced MAiD (a medical procedure that causes death) to those not at imminent risk of dying, I was appalled to learn that my patients, who are frequently blocked from care as a result of hurdles created by our government and systems, could potentially be offered an expedient death provided by the government.
In 2016, assisted suicide and euthanasia were first legalized in Canada and the term medical assistance in dying (MAiD) was created. Originally MAiD was presented as an exceptional lethal procedure for ending the lives of consenting adults who were experiencing intolerable suffering and were near death. The legislation required that patients meet certain criteria, including having a “grievous and irremediable” medical condition, such as organ failure or cancer, and a “reasonably foreseeable natural death.”
But the Canadian discourse around MAiD rapidly shifted to facilitating access and there has been a broadening of the number and criteria of those who qualify for MAiD. In 2021, Bill C-7 came into effect and removed some of the safeguards within the original pathway, now called Track 1, and created a new, second track, Track 2, for adults with physical disabilities[1] who are not dying. Furthermore, there is a planned expansion, though the timing is currently being debated in Parliament, for patients whose only medical condition is mental illness. Parliamentary recommendations in 2023 included future expansion to children and to incapable adults who signed advance directives for euthanasia.
Currently, those in Track 1 with a “reasonably foreseeable natural death” can potentially have their life ended the same day as the initial request if all the criteria are met and practitioners are available.
For those in Track 2, those not dying, death by lethal injection is set at a minimum of 90 days after the completion of the first MAiD assessment. To qualify for this track, a patient must also have a “grievous and irremediable” condition and experience intolerable psychological or physical suffering. Suffering is treated as purely subjective with no requirement for further validation. There is also no legal requirement for standard treatment options to be accessible or tried, only that a patient be informed that they exist. This means that a patient who says they are suffering intolerably could access MAiD having declined treatments that would remediate their condition. This could be because the treatment is inaccessible, or unaffordable, or if the patient declines therapy.
The Canadian Association of MAiD Assessors and Providers (CAMAP) has received 3.3 million dollars in funding from Health Canada to educate clinicians assessing and providing for those who have requested the service. So although the existing Track 1 and Track 2 pathways have different safeguards, in aiming to allow those near death to have access to MAiD quickly and with no barriers, CAMAP has created a guidance document that suggests clinicians can be flexible as to whether someone fits Track 1’s reasonably foreseeable natural death, since the law does not require that the person be terminally ill or likely to die within 6 or 12 months. It also states that a person may meet the reasonably foreseeable criterion if they’ve demonstrated a clear and serious intent to take steps to “make their natural death happen soon, or to cause their death to be predictable.” This could come about from a refusal to take antibiotics for an infection, stopping oxygen therapy, or refusing to eat and drink.
This means that people with disabilities can state their intention to or make themselves sick enough to qualify as having a reasonably foreseeable natural death, as is currently happening with adults who are not dying and yet are having their lives ended within days of their first MAiD assessment. In one case, a man had a mild stroke and received MAiD shortly after, even though he wasn’t terminally ill. The reason? He was approved for track 1 as he was temporarily eating less. This was due to following a cautious meal plan ordered by the treating team which was intended to prevent choking and aspiration risks.
Currently, some places in Canada have MAiD rates that are the highest in the world. By the end of 2022, there had been almost 45,000 MAiD deaths across Canada since legalization—more than 13,000 of which took place in 2022 with 463 of those individuals accessing MAiD through Track 2. Estimates based on provincial reporting approximate 16,000 deaths in 2023. Health Canada and MAiD expansionists have tried to reassure the public that the overwhelming number of MAiD deaths have been mostly Track 1 deaths (implying they were dying anyway) but we do not know how many of those persons were “fast-tracked” and may have had many decades of life left to live and the potential to recover with time and care.
The CAMAP guidance document that seems to circumvent Track 2 safeguards is just the beginning of many serious problems with MAiD legislation and practice in Canada.
Patient safeguards for MAiD are lacking
Other jurisdictions in the world where MAiD practices are legalized, such as New Zealand and Victoria, Australia, frown on or prohibit raising death as a treatment option. This is due to the power imbalance that exists between physician and patient, coupled with the patients’ assumption that the provider will only suggest the best options for their health. Raising MAiD unsolicited could cause undue pressure to choose death. Yet Health Canada’s 2023 Model Practice Standard for Medical Assistance in Dying recommends that MAiD should be raised to all who might qualify if the practitioner suspects it aligns with a patient’s values and preferences.
The model practice standard’s approach to “conscientious objection” is equally troubling. Health care providers who object to providing MAiD, even in specific cases, are considered conscientious objectors. A physician who is concerned that MAiD is not a patient’s best option is supposed to ignore their conscience or professional opinion and simply refer the patient on so they can seek access to a MAiD death.
This is further echoed in a CAMAP video training session where experts explain that patients might be driven to MAiD by unmet psycho-social needs. The expert leading the session responds to a trainee’s concerns: “If withdrawing is about protecting your conscience, you have [an] absolute right to do so.” But he adds: “You’ll then have to refer the person on to somebody else, who may hopefully fulfill the request in the end.” This demonstrates precisely how effective referrals can funnel patients toward death despite legitimate professional concerns and obligations that should have instead led to the process being stopped or paused.
In response to this legislation, many from the disability community have advocated for safe spaces where MAiD can’t pose a risk to their lives. The Disability Filibuster, a national grassroots disability community, stated in an open letter that its members have raised fears about seeking health care where death could be offered to them and if at their lowest, they might agree.
The disability community is not being alarmist in this concern. Health care providers often rate the quality of life of those with disabilities as poor despite those patients rating their own quality of life as the same as aged-matched healthy individuals. Put differently, many physicians might consider that patients with disabilities are better off dead, consciously or unconsciously, which might lead them to suggest MAiD.
Besides the problems of mandatory referral and raising MAiD unsolicited, there is another important factor to consider. Persons with physical disabilities systemically lack much of the essential care they need to live and consequently suffer higher rates of isolation, poverty, and marginalization, all of which can make death their most accessible option. The Canadian government commissioned a University of Guelph study, published in 2021, in which the researchers noted that some persons with disabilities were encouraged to explore the MAiD option—even though they had not been contemplating doing so—because of a lack of resources that would enable them to live. Those with disabilities can be approved for MAiD based on their disability, but it is their psycho-social suffering that can drive their requests.
The United Nations Special Rapporteur on the rights of persons with disabilities, the Independent Expert on the enjoyment of all human rights by older persons, and the Special Rapporteur on extreme poverty and human rights have all warned the Canadian government that the current MAiD framework could lead to human rights violations. Their concerns are validated by the numerous fact-checked stories about MAiD abuses that are emerging in Canada. These should give us pause. For example, Sathya Dhara Kovac, 44, ended her life through the MAiD program. She lived with a degenerative disease and her condition was worsening, but she wanted to live but lacked the home care resources to do so. “Ultimately it was not a genetic disease that took me out, it was a system,” Kovac wrote in an obituary to loved ones. All Canadians have a right to humane living conditions, to be treated with respect and dignity, and to receive appropriate timely medical care. Considering the living conditions and lack of care that as a society we allow persons with disabilities to have, choices to die might be understandable for those like Sathya. But we should ask ourselves if choices, made under inhumane conditions, are made freely if driven by structural coercion.
Disturbingly, there are MAiD assessors and providers who seem to be ok with proving MAiD under such inhumane conditions. One such provider testified at a parliamentary committee on MAiD that if someone had to wait a long time for a service that would remediate their suffering, she would still consider that waiting to be irremediable suffering and grant them MAiD in the interim. Therefore, it is not surprising that patients with unaddressed psycho-social suffering are being given MAiD by assessors like her.
When it was considering Bill C-7, the federal government asked the Parliamentary Budget Officer to estimate cost savings to our health care system of the legalization of MAiD. The office did this by looking at the comparative cost savings of MAiD versus palliative care at the end of life. Through this impoverished lens of valuation, it is clear that the cost savings will be even greater when, by many years, we prematurely end the lives of people who have higher care needs, especially when we factor in social services, disability benefits, equipment, and other costs on top of the direct savings to health care budgets. But this is not how we should create budgets or measure outcomes. Our socialized health care system is meant to serve those with disabilities, not consider them a cost to the system.
The Canadian government is currently deciding on the timing for its further roll-out of MAiD, this time for mental illness and with no legislative changes to the current safeguards. This expansion is alarming given what we know is happening already to disabled Canadians under the existing MAiD regime. The Canadian Association of Chairs of Psychiatry wrote a letter in 2022—and some testified more recently in Parliament—that we are not ready for this development. They have warned that there is no evidence to guide decisions about who with mental illness would not get better. The evidence suggests that for every 5 people whose lives would be ended based on the sole medical condition of mental illness, 2 or 3 would have recovered. We expect to have much higher numbers qualifying for MAiD on the grounds of mental illness in Canada than in other jurisdictions that allow assisted death for this reason, since barriers to care and unmitigated psycho-social suffering do not have to be rectified in this country (as they do elsewhere) before being granted MAiD.
Our government has allowed the incredible power and influence of certain lobby groups and their members to control the public discourse and policies around MAiD and its expansion, prioritizing access to MAiD over the safety of Canadians. Besides the current discussion about when to legalize MAiD for mental illness, the parliamentary committee has also recommended expansion to children and MAiD by advance directives. With eligibility for MAiD continuing to broaden, we are not giving priority to serving those most in need, but instead seem intent on rapidly expanding a path to end their lives.
- Dr. Coelho is a family physician in London, Ontario. Her practice largely serves marginalized patients.