How Death Care Pushed Out Health Care

Conscience is our unerring judge until we finally stifle it.

-- Honoré de Balzac, The Magic Skin

‘Next question is from Debbie,” the moderator of a discussion on medical decision-making capacity said to her fellow physicians. “How would folks interpret someone who has lost capacity with a waiver in place and is now delirious, shouting, pulling their arm away as one tries to insert the IV to provide MAID?”

Preceding this panel, a training seminar for the Canadian Association of MAID Assessors and Providers (CAMAP) had informed participants that the criminal law on medical assistance in dying (MAID) is strict. How strict? On the same day that a patient enters into an optional written agreement with only one of his or her two MAID assessors -- even if it is unsigned, without any witnesses, and with no family members having been informed -- the clinician can administer the lethal injection without asking for the final consent of the patient.

The asterisk in the law is that the agreement is in place only as long as the patient “does not demonstrate, by words, sounds or gestures, refusal,” or “resistance to its administration.” If this demonstration is “involuntary” and “made in response to contact,” the death of the patient may still proceed. But consent is a spectrum, and patients with delirium can flicker between having capacity and not; patients can also change their minds about dying at the hands of their physician or nurse.

The hypothetical question posed to the panel was, in effect, whether there is a loophole to get around the criminal law. The moderator, Ellen Wiebe, is one of Canada’s most prolific “MAID providers” and a leader in the MAID community. On request, she has hastened the deaths of at least 400 people, including some cases that other assessors believed were illegal. She offered an answer: “I’m guessing I would bring in one of their other providers, you know, palliative care or, or whatever, and get them sedated. But what would you say?”

First to speak was Jim MacLean, who claims that he has performed more than 75 “provisions” since MAID expanded to include non-dying patients. “I don’t think I have any great thoughts on this one.” Wiebe laughed. “Everyone’s different. I mean, you try to deal with the situation. Calm the room down. See what you can achieve through conversation and calmness.”

Chantal Perrot is the co-chairman of a clinician advisory council for Canada’s largest pro-MAID lobby group. She described herself to a parliamentary committee as someone who has “cared for hundreds of patients . . . as they navigated the MAID process.” Responding to Wiebe, she said, “That’s a question. If they’re sedated, then have we sedated them into being accepting of MAID? You know, that’s a whole other question.”

Then comes the ethicist’s turn to speak. Kevin Reel, a senior ethicist at Sunnybrook Hospital in Toronto and former president of the Canadian Bioethics Society, answers in part with another question: “If what we’re doing by trying to honor the waiver is reducing distress for the patient and also for maybe even the family around them, would it be acceptable to do something similarly covert to keep them from reacting in that way?”

Reel continues, “That might be a way around it, but -- ” before being interrupted by MacLean, whose new answer takes the question from the hypothetical to the actual and clarifies what he meant by “conversation and calmness”: “One waiver I did use, the patient was a little agitated. So we did give her some subcutaneous hydromorphone” -- an opiate ordinarily used for acute-pain control instead of sedation -- “before I did the MAID, did the provision. So we did, we did use it in that situation and it was very helpful.”

“Good,” the moderator says, before moving on to the next question. No one in the panel or audience objects.

The training seminar, recorded in October 2021, marks a milestone in Canada: a documented case of physicians describing the sedation of a patient to obtain her consent to her death.

CAMAP, the self-styled “clinical subject-matter experts on MAID in CANADA,” is in the process of releasing the nationwide training curriculum, funded by the federal government in the amount of $3.3 million, for all MAID clinicians.

The first rule of medicine is to do no harm. The second rule in countries that have legalized death care is that the first rule doesn’t matter anymore.

The introduction of death care -- in each state of Australia; in Canada, Belgium, and the Netherlands; recently in Spain and soon in France; and in ten states and counting across the United States -- was meant to provide another treatment option in end-of-life care, another tool for use by physicians and their patients. At the core of death care is the presumption that safeguards work and that consent, the most important safeguard, prevents death care from slipping into rampant homicide or suicide contagion. Instead, it is turning into the end of medicine.

In Belgium last year, after a lethal injection failed to kill a 36-year-old woman with terminal cancer, the presiding physician smothered her with a pillow. In New Zealand and Canada, suicidal patients seeking medical care for suicide prevention were prompted to consider assisted suicide instead.

In the Netherlands, a similar story of a physician sedating her patient into accepting euthanasia led to the first criminal trial of a euthanasia physician. She was acquitted. The judges said, “We believe that given the deeply demented condition of the patient the doctor did not need to verify her wish for euthanasia,” even though the patient repeatedly attempted to fight off her physician.

I have written previously about how a failed suicide attempt in Canada was completed through euthanasia, despite concerns of illegality by physicians involved with CAMAP, an organization that has held internal seminars on patients requesting euthanasia because of poverty, lack of medical care, homelessness, and credit-card debt.

Across jurisdictions that legalized death care, often what started as a choice is now the first or even the only option left. “We’re now no longer dealing with an exceptional treatment, but a treatment that is very frequent,” Michel Bureau told the Canadian Press news agency this summer. He speaks with authority as the head of the Commission sur les soins de fin de vie (commission on end-of-life care), the independent monitoring agency for MAID in Quebec.

Elsewhere, in every jurisdiction, the number of deaths at the hands of physicians or nurses is ballooning as safeguards are rescinded. Nearly a decade ago, the rapid increase of hastened deaths led a Dutch regulator in charge of oversight to plead for other countries to drop their plans for legalization. Too few listened. In California, the number of assisted suicides last year increased by more than 63 percent. In Canada, the number of deaths by euthanasia is on track to increase more than 13-fold in just the first seven years of the practice’s legalization. Belgium has seen a more than twelvefold increase since 2003. In Switzerland, which legalized assisted suicide in 1941, the number of such suicides has doubled every five years since 1999.

Patients with medical conditions that politicians and policy-makers in health care never considered to be valid reasons to die are now being helped by physicians willing to hasten their deaths. A sibling found out that his brother’s MAID paperwork in British Columbia listed only “hearing loss” as his qualifying condition. In the Netherlands, dozens of patients qualified for euthanasia only because of autism. In Canada, “advanced age” helps qualify patients to die, even though Quebec cautions that to rely on it as the sole criterion is illegal. Young patients have died through euthanasia in Belgium for a range of reasons, including a botched sex change, sexual exploitation by a psychiatrist, unresolved post-traumatic stress disorder after a terrorist attack, and again, this time in twins, hearing loss.

Last year the Swiss Medical Association saw a need to issue a statement reminding physicians, for the first time, that “assisted suicide for healthy persons is not medically and ethically justifiable.” The agency responsible for monitoring assisted suicides in Quebec issued a similar reminder over the summer. The humanist and bioethicist Leon Kass warned that if the value of a human being is considered subjective, invariably the right to die metamorphoses into the duty to die. Canada, which legalized euthanasia and assisted suicide in 2016, and Australia, where state laws permitting assisted suicide began to go into effect in 2019, are the ideal case studies. In a matter of just a few years, publicly funded death care pushed out the public health-care system. There is no happy outcome.

Over the past year, I spoke to medical professionals, patients, and others caught up in or worried about the state of medicine, as health care in Canada and Australia turns toward death care. For people quoted here who asked to remain anonymous, I use a first name only. Many of the physicians and nurses who spoke with me are in the process of leaving their chosen fields or medicine altogether. Others, maintaining their commitment to the Hippocratic oath and to faith-based values of not harming their patients, are facing legal and professional repercussions -- including demotion from leadership positions, censure from their colleagues, and retaliation from their medical colleges.

The patients I spoke with are equally unsure of their future, whether they will live or die in a medicalized world that asks them -- and only them because of their illnesses or disabilities -- to consider their lives not worth living. None of them has a terminal illness. They tell me that they want to live, but they feel they might not get the chance. One person I interviewed, who recently applied for MAID, said in a social-media post, “If I don’t make it, be sure to say I was murdered, because I didn’t give up, I was pushed.”

Let me begin with Father Tony Percy. “I have been running the charge against the government,” he told me, by way of introducing himself. What happened, he says, is “a smash-and-grab.” Over the summer, the government forcibly nationalized a Catholic hospital. On Sunday morning, at Mass time, workers entered the hospital to remove all Christian iconography before the “government . . . could trash them,” he said. The statue of Mary, staff memorial stones, the iconic blue cross on top of the façade, and every crucifix left in the building were taken down. The local archbishop decried these actions as “totalitarian,” but international media largely ignored him.

This scene was not in China, not in a dictatorship. Rather, it was at Calvary Public Hospital in Canberra.

The reason for this move, as given by the left-leaning government of the Australian Capital Territory (ACT), was to improve “ambiguities in clinical governance.” That flatly makes no sense. The secular public hospital that replaced Calvary is one of the most dysfunctional hospitals in Australia, with rampant complaints of bullying and allegations of misconduct. The dysfunction is seen in the longest wait times for the ER in Australia, an obstetrics unit failing its training accreditation, formal reports of unsafe working conditions at the intensive-care unit, and multiple departments in turmoil -- cardiology, pediatrics, plastic surgery, and mental health. The ACT government moved at breakneck speed to take over the hospital. In a matter of weeks, ACT legislators overwrote their own legislation to let them break the hospital’s contract, which had 76 years remaining. Two former prime ministers, Tony Abbott and John Howard, condemned the ACT’s actions.

At first, the media reported that the takeover was because of abortion. Less than a month earlier, a government inquiry into abortion access in the region claimed that Calvary was “intensely problematic . . . due to an overriding religious ethos.” Calvary, it is true, did not provide elective abortions on site. That is not only because it was a Catholic hospital; it is also because no public hospital in Canberra routinely terminates pregnancies, and after its forceful acquisition, Canberra Public Health won’t terminate pregnancies either. And it wasn’t just Calvary that was nationalized -- so, too, was the adjacent Clare Holland House, the only palliative-care clinic in the region. The reason for the takeover of Calvary was that it had dared to speak up in the media: “Calvary does not support euthanasia . . . nor do we recognize these interventions as medical treatments.” This was a problem for the ACT government, which announced that by the year’s end it will introduce death care in the territory. The policy is widely expected to be the most permissive in Australia. The ACT human-rights minister has already proposed legalizing euthanasia for persons as young as 14. Deputy opposition leader Jeremy Hanson warned that “the ACT government’s dictatorial and undemocratic compulsory takeover of Calvary hospital shows the lengths it will go to roll out its extreme euthanasia agenda.”

The nationalization of Calvary is not an isolated incident, though it is the most egregious. A senior director of a palliative-care unit in Victoria told me that, after euthanasia was legalized in that state, “there were many palliative-care services or directors that went to the Department of Health and . . . said, Look, we don’t think this is right. And they were basically told to be quiet and go away; otherwise their funding will be cut.” In Canada, out of the 35 palliative clinics in Quebec in 2015, not one offered euthanasia on site. After repeated threats of funding cuts, only four were still holdouts this year -- until the provincial government passed legislation this summer to force them to allow euthanasia. Even when palliative-care clinics have fought back, the results have been predictable. The Delta Hospice Society in Vancouver attempted to prevent euthanasia from being offered on site. Its president, Angelina Ireland, told me that, even though 25 years remained on their lease, they were given an ultimatum: offer MAID or lose your funding -- and consequently your lease. They offered to give ten hospice beds to the public-health-care system if they could remain without MAID. Instead, their funding was pulled, and their privately funded buildings, assessed at $8 million, were “just expropriated. And they gave us no compensation.” In Ireland’s opinion, “there’s nothing medical” about MAID. “MAID is a political movement.”

None of this should be shocking. In 2018, at CAMAP’s annual conference, the leading death-care practitioners gamed out their plan. It was nothing short of prescient. Many speakers, such as the CEO of Dying with Dignity, stressed that MAID is a “political issue” and that it would require “the political will to speak out against Catholic institutions around MAID.” Moreover, as some panelists insisted, it was important for practitioners to “recognize the harm to vulnerable populations that comes with the assertion of freedom of religion.”

In comparison, MAID was “sacred.” One speaker implored non-MAID clinicians “to keep the spirit of MAID intact.” Just two years into Canada’s euthanasia experiment, physicians were busy laying plans for how to expand euthanasia to children, especially Indigenous children, since they “are considered wise because they are closest to the ancestors.”

Another speaker was a “MAID provider” who said, “I’ve also done euthanasia for 15 years because I’m a veterinarian. My humble suggestion to CAMAP is that you speak to veterinarians. . . . There also are huge similarities. For example, we’re euthanizing beloved family members, too.”

Senior CAMAP leadership has repeatedly denied that patients are receiving euthanasia primarily because of poverty. Yet in 2018, it devoted an entire panel to “providing MAID to vulnerable, Indigenous, homeless, and frail elderly populations.” Panelists described how they could “help to empower vulnerable populations” by helping “patients fight for options that would allow them to have access to MAID” -- in other words, to help find “what supports” patients might need to die instead of to live.

“I have a First Nation patient who meets all the criteria for MAID, but much of their suffering is due to a life lived in poverty,” one panelist said. “If I could change their social determinants of health, their situation might improve.” Even a hypothetical example of a patient with “fixed delusions that are causing him severe suffering” was deemed potentially eligible because “it doesn’t matter what he wants [MAID] for.”

While Stefanie Green, the head of CAMAP, instructed members in how to befriend the palliative-care community, the reality was more sinister. Contrary to the long-standing principle of palliative care, that it “will neither delay nor hasten death,” the audience debated whether “in Canada” they need to “just accept that.” Could they instead “accept that in some cases it’s acceptable to hasten death”? Although the answer was no, in the short run, the head of CAMAP urged patience: “Over time, perhaps ten years from now, I think this conversation will happen again. If we push it now too hard and too fast, I think that will put more wedges in.”

CAMAP’s strategy has already succeeded. In 2017, Vancouver Island used to have a Catholic hospital and four hospice beds. But as a consequence of a public campaign by death-care advocates, there are no remaining “MAID-free” spaces on the island. Now it has the world’s highest rate of euthanasia: Over 7.5 percent of all deaths are from MAID -- and that number is rising.

Without spaces to practice medicine free from death care, physicians have no adequate protections to follow their conscience and their faith.

“I know I actually can’t kill someone,” Helen Lord, one of the nine palliative specialists in Tasmania, told me. “I can’t do it.” Once death care was legalized in her state, she decided to retire early. “I said I’m not going to have any part of this. It’s not medicine. It’s just not what we do. . . . Half of the people who came into [my] palliative care were scared that they were going to be euthanized.”

When Lord became outspoken against euthanasia, she was demonized as a “right-wing Evangelical.” She’s not. She’s Anglican -- and closer to the left. But because she thinks that “life is precious” and equally that “time is precious,” especially for the dying, she was a frequent target of the media. After a complaint that she claims was false was lodged against her, she knew her time was up.

Even when a complaint is false or frivolous, fighting it is not easy. Félix Pageau, a geriatrician practicing in Quebec, testified to a national parliamentary committee in Ottawa that in his opinion as a physician, based on research, Canada was not ready to expand MAID to advanced dementia. For this, he said, a colleague in his home hospital “filed a complaint to the Collège des médecins” saying he “lied” to the committee. The Collège decided to “open an inquiry, even though they don’t have jurisdiction over testimony at the federal [level] or in the Parliament.” The investigation became an ordeal -- and an expensive one, since Pageau needed to hire a lawyer. Pageau in his parliamentary testimony was exercising his free-speech rights. Eventually, the Collège ruled that it did not have jurisdiction, but the point was made.

Another physician, a former director of a palliative clinic in Canada, told me, “I had to leave a job that I loved” because “the MAID situation” made it “just too difficult to practice medicine here.” After she spoke up publicly to urge that MAID and palliative care be separate, she was constantly harassed; her email was flooded with dozens of gory images. Another palliative-care physician told me that he started his own small clinic rather than stay at the hospital where he practiced. “Physicians that go against the narrative are sanctioned,” he said. “They’re marginalized. It’s hard. It’s risky.”

David D’Souza, a physician in Ontario, told me, “I think already there’s a lot of abuse going on, and I’m seeing it in my own practice,” including when families pressure loved ones to die so that estates or insurance payouts become available sooner. “It’s making me think twice about whether I should be continuing in geriatric care.” His brother, Mark, also a physician, left palliative care entirely. “We’re literally doing harm even though it’s under the guise of compassion,” Mark said.

In my conversations, the most optimistic take I heard was the bluntest. A notable palliative-care physician in Quebec told me: “A lot of people will die before it becomes better.”

The effect of legalizing death care is not just the hostile takeover of medicine. It hurts those who are the most vulnerable, those who want not to die but to be helped to live.

“We need MAID-free spaces where we can safely seek out health care and be fully confident we won’t have MAID presented to us as a ‘treatment option,’” Gabrielle Peters, a disabled writer and policy analyst in Canada, told me. “This is essential.”

Rachel, a woman with a condition that causes chronic pain, told me about the difficulties of the past year. “Every day was really hard to stay alive,” she told me. “I really felt like I was dead.” She also suffers from major depression and has a history of PTSD from childhood abuse. “If I said that I wanted to die or that I couldn’t hack it anymore” when she spoke with health-care practitioners before MAID was legalized, “I was met with, ‘Here’s some coping skills and let’s talk about it,’ and various forms of therapy and resources being brought to bear.”

Once her condition qualified for MAID, in 2021, she began to notice a trend. “I would call the crisis line, the suicide crisis line. Many of these mental-health professionals, their advice would be to go look up Dying with Dignity’s website.” She tried to get help for thoughts of suicide, and instead she was being offered advice for how to die from assisted suicide.

“I have been afraid, you know, over this last couple of years to go to just my local hospital, because I was afraid that if any doctor either brought up MAID themselves or met my kind of ambivalent desire for MAID, all I needed was a push and I would be dead right now.”

For Rachel, the advent of MAID came at the wrong time. After having her medical conditions under control for a decade, she felt her life begin to unravel: Her chronic pain worsened, and that fueled her depression, only for her to become more socially isolated, which exacerbated her symptoms. It was a never-ending vicious cycle of despair. Yet her physicians wouldn’t listen to her, believing neither her suicidal urges nor her need for better pain control. “It was scary,” she said. “I didn’t know what was going on with my body.” Out of options, she started her MAID application.

It was at this nadir that she heard of the Centre for Addiction and Mental Health (CAMH), Canada’s largest mental-health teaching hospital, located in Toronto. The hospital’s public statements against expanding MAID caught her attention. Its policy is that no CAMH clinicians can provide MAID on site. She felt that she had found a MAID-free space that could treat her illnesses. (CAMH is yet to release a statement on whether its MAID policy will change when, in six months, MAID will be expanded to include mental illnesses.)

Rachel decided to risk everything. With her meager savings from her disability benefits, she purchased a one-way, long-distance bus ticket, not knowing whether she would be admitted to the hospital or instead end up homeless. “I literally just presented myself at the CAMH ER,” she said. “Part of the reason I felt safe to go to CAMH is just because I knew that they do not endorse MAID for mental illness. They’re pretty strict on that.” In a sense, Rachel lucked out. Despite the usual long wait times at Canadian emergency rooms, especially for psychiatric illnesses, her poor condition meant that her case was triaged to the front of the queue. She soon discovered how MAID was viewed by doctors at the center. “On the psych ward at CAMH, my psychiatrist was terrified -- terrified,” Rachel said, carefully enunciating every syllable, “that I would talk about MAID on the floor with the other patients. She was terrified of suicide contagion.”

Over the span of weeks, Rachel began to recover. She was finally put on a new form of pain control; her depression improved. But the most important change at CAMH was that, finally, she felt listened to. “Sometimes, all you need is someone to come alongside you. And just help you cope through the everyday,” she said. “Whether it’s a doctor or just the person who is walking alongside me while I’m in a lot of pain. It may not change how much pain I actually have. But it sure makes a big difference to how much I suffer from that pain.”

Rachel is now happily back home. “I have no intention of using MAID. I have 100 percent turned away from it. Only because I had health care. All I needed was health care and pain care.”

In the first story that I wrote about death care, “No Other Options,” published in the New Atlantis, I wrote about Rosina Kamis, a 41-year-old Toronto woman with fibromyalgia. She chose to die from MAID in part because of her inability to access proper medical care. Before she died, she entrusted her friend James, a former neighbor, to represent her as her power of medical attorney; since her physicians weren’t listening to her, she wanted to see if someone else who has fibromyalgia, as James does, could get her the medical care that she needed. Despite his efforts, James couldn’t help her -- and now, after her death, he can’t get the help that he needs. He messaged me months after our first conversation to tell me that he now sees his own future in what happened to Rosina.

James told me that he is living with the specter of an imminent administered death, like Rosina’s. He could decide to stop fighting for the care he needs, too. It seems inevitable. “I’m going to take it one day. That’s how it feels to me. I don’t like that, but to me, the way things are going, this society is really sending us disabled people a message,” James said. “We got that message even before MAID. But now it’s codified into law and there’s these processes and resources to expedite it.”

“I have diagnosed mental-health conditions and I can’t get treatment. I need therapy. My doctor asked me the other day, What do I need? I need therapy. I need a long-term relationship with someone. And she told me, she said, That’s impossible.” Instead, he was sent YouTube videos on how to do stretches. He chuckles.

“I need actual health care,” James said. Eventually, he tells me, he’ll get death care instead.

***

Editor's note: In a previous version of this article, a female physician who was tried and acquitted in the Netherlands was erroneously referred to as male.