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Canada is still determining who should be eligible for MAID for mental illness, but some experts say it could become the most permissive jurisdiction in the world
Most people who seek a doctor's help to die are already dying of cancer.
With terminal cancer, "there is something inside the body that can be seen," says Dutch psychiatrist Dr. Sisco van Veen, tumours and tissues that can be measured or scanned or punctured, to identify the cells inside and help guide prognosis.
You can't see depression on a scan. With the exception of dementia, where imaging can show structural brain changes, "in psychiatry, really all you have is the patient's story, and what you see with your eyes and what you hear and what the family tells you," van Veen says. Most mental disorders lack "prognostic predictability," which makes determining when psychiatric suffering has become "irremediable," essentially incurable, particularly challenging. Some say practically impossible. Which is why van Veen says difficult conversations are ahead as Canada moves closer to legalizing doctor-assisted deaths for people with mental illness whose psychological pain has become unbearable to them.
One year from now, in March 2023, Canada will become one of the few nations in the world allowing medical aid in dying, or MAID, for people whose sole underlying condition is depression, bipolar disorder, personality disorders, schizophrenia, PTSD or any other mental affliction. In the Netherlands, MAID for irremediable psychiatric suffering has been regulated by law since 2002, and a new study by van Veen and colleagues underscores just how complicated it can be. How do you define "grievous and irremediable" in psychiatry? Is it possible to conclude, with any certainty or confidence, that a mental illness has no prospect of ever improving? What has been done, what has been tried, and is it enough?
"I think there's going to be lots of uncertainty about how to apply this in March 2023," says Dr. Grainne Neilson, past president of the Canadian Psychiatric Association and a Halifax forensic psychiatrist. "My hope is that psychiatrists will move cautiously and carefully to make sure MAID is not being used as something instead of equitable access to good care."
In the mental health field, opinions are deeply divided. Mental illness is never irremediable, one side argues. There is always hope for a cure, always something more to be tried, and a person's ability to think rationally, to seek an assisted death when they might have a life expectancy of decades, can't help being clouded by the very fact they are struggling psychologically.
In psychiatry, really all you have is the patient's story, and what you see with your eyes and what you hear and what the family tells you
Others argue that despite well-meaning "Bell Let's Talk" days, there still exists a profound lack of understanding about, and fear of, mental illness, and that the resistance reflects a long history of paternalism and unwillingness to accept that the suffering that can come from mental illness can be as equally tormenting as the suffering from physical pain.
Sometime in April, an expert panel struck by the Liberal government to propose recommended protocols for MAID for mental illness will present its report to the government. A joint parliamentary committee studying the new MAID law has been given a mandate to report back by June 23. The expert panel's chair declined an interview request, but her 12-member assembly has been tasked with setting out proposed parameters for how people with mental illness should be assessed for and — if found eligible — provided with MAID, not whether they should be eligible.
Those who know the literature well say the panel has likely looked long and hard at several questions: Must the person seeking a doctor-assisted death have tried all possible evidence-based treatments? All reasonable treatments? At least some? How long should the "reflection" period be, the time between first assessment and provision of death? Should cases of MAID for mental illness require approval from an oversight committee or tribunal, the way abortions in this country once had to be deemed medically necessary by a three-doctor "therapeutic abortion committee," before abortion was decriminalized more than three decades ago?
The idea that mental illness might make someone eligible for state-sanctioned assisted death had long been forbidden ground in Canada's euthanasia debate, and the path from there, to here has been a convoluted one.
Canada's high court ruled in 2015 that an absolute prohibition on doctor assisted dying violated the Charter, that competent adults suffering a "grievous and irremediable" medical condition causing intolerable physical or psychological suffering had a constitutional right to medically hastened death.
That decision formed the impetus for Canada's MAID law, Bill C-14, which allowed for assisted dying in cases where natural death was "reasonably foreseeable."
In 2019, a Quebec Superior Court justice ruled the reasonably foreseeable death restriction unconstitutional, and that people who were intolerably suffering but not imminently dying still had a constitutional right to be eligible for euthanasia.
In March 2021, Bill C-7 was passed that made changes to the eligibility criteria. Gone is the "reasonably foreseeable" criterion and, as of March 17, 2023, when a two-year sunset clause expires, MAID will be expanded to competent adults whose sole underlying condition is a mental illness.
Already, the removal of imminent death has made MAID requests far more complex, providers say. These are known as "Track Two" requests. At least 90 days must pass between the first assessment and the administration of MAID. Most involve chronic, unrelenting physical pain — nerve impingement, significant muscle spasms, neuropathic pain, chronic headaches. Ottawa MAID providers have received roughly 80 Track Two requests over the past year. "I think we've had only two proceed," said Dr. Viren Naik, medical director of the MAID program for the greater Ottawa area. Of the 30 providers within The Ottawa Hospital program, only four are willing to see Track Two patients, and Naik says he's probably going to lose two more of them. Many are conflicted when people aren't close to dying. "Making sure that they're not requesting MAID because they're vulnerable in any way has also been a challenge. If I take that to mental health, I think those issues are only going to compound."
The expert panel has been instructed to recommend safeguards. For Dr. Sonu Gaind, a past president of the Canadian Psychiatric Association, the most fundamental safeguard has already been bypassed, because there is no scientific evidence, he says, that doctors can predict when a mental illness will be irremediable. Everything else goes out the window.
Gaind isn't a conscientious objector to MAID. He's the physician chair of the MAID team at Humber River Hospital in Toronto, where he's chief of psychiatry. He works with cancer patients. He's seen the positive, the value that MAID can bring. But unlike cancer, or progressive, neurodegenerative diseases like ALS, "we don't understand the fundamental underlying biology causing most major mental illnesses."
"We identify them through the clustering of various symptoms. We try to target treatments as best we can. But the reality is, we don't understand what's going on, on a fundamental biological level, unlike with the vast majority of these other predicable conditions." Without understanding the biological underpinnings, what do you base your predictions on, he asks. He's heard the argument that it's difficult to make firm predictions about anything in medicine. But there's a world of difference between the degree of uncertainty between advanced cancers and mental illnesses like depression, he argues.
"There's no doubt that mental illnesses lead to grievous suffering, as grievous, even more grievous in some cases than other illnesses," Gaind says. "It's the irremediability part that our framework also requires and that scientifically cannot be met. That we cannot do. That's the problem."
Euthanasia for mental illness has, in fact, already occurred in Canada. Testifying before a Senate committee studying Bill C-7 last year, Vancouver psychiatrist Derryck Smith told the story of "E.F.", a 58-year-old woman who suffered from severe conversion disorder, where a person's paralysis, or blindness or other bizarre nervous system symptoms can't be explained by any physical findings. She suffered from involuntary muscle spasms. Her eyelid muscles had spasmed shut, leaving her effectively blind. Her digestive system was a mess, she was in constant pain and needed to be carried or use a wheelchair. In May 2016, Alberta's Court of Queen's Bench allowed her an assisted death.
Smith took part in another case involving a 45-year-old Vancouver woman who had suffered from anorexia nervosa since she was 17. She'd endured a "gauntlet" of treatments, he said, had been certified several times under the Mental Health Act, involuntarily hospitalized and force fed by a tube in a manner that left her feeling "violated." "At the time I assessed her, she had virtually no social life … no joy in her life." Smyth determined the woman had capacity to agree to assisted death.
While most people with anorexia nervosa recover, or eventually find some stability, "a minority of those with severe and enduring eating disorders recognize after years of trying that recovery remains elusive, and further treatment seems both futile and harmful," Dr. Jennifer Gaudiani and colleagues write in a controversial paper that sparked an outcry among some colleagues for suggesting people with severe, enduring anorexia — "terminal" anorexia — have access to assisted dying.
The term terminal anorexia nervosa isn't recognized in the field "as even being a thing," Gaudiani said in an interview. "There are plenty of clinicians and parents who say, 'How dare you? This could never be a terminal diagnosis.'"
"This represents an exceptionally tiny fraction of people," Gaudiani says. In her paper, she describes three, including Jessica, a "brilliant, sensitive, thoughtful, intuitive" 36-year-old woman who had struggled with anorexia since her junior year of high school. She suffered her first hip fracture at 27, her bones collapsing from malnutrition. She cycled in and out of treatment, and every meaningful bit of weight gain was followed by more restricting, more binge eating, and laxative abuse. Terrified of a long-drawn-out death from starvation, she sought and received a prescription for MAID. Gaudiani was the consulting doctor.
The Denver eating disorders specialist says she couldn't imagine endorsing MAID for any other psychiatric condition, although "it may be that I will down the road." But with chronic, enduring anorexia nervosa, "some people think that you must continue to force folks to keep trying, keep doing new things, rather than accepting that they may have a case that can't be turned around," she said.
But how is it possible to know that it can't? The case illustrates how fraught the question can be. Offering MAID to people with anorexia nervous would be "complicated beyond belief," says Dr. Blake Woodside, a professor in the department of psychiatry at the University of Toronto and former director of the largest hospital-based eating disorders program in the country, at Toronto General Hospital.
Doctors would need an enormous amount of clarity about the criteria, assessments would need to be done by people deeply experienced in treating the disease who could differentiate between someone who is hopeless, "and somebody who has made a reasoned decision that their life should end. And those are two different situations," Woodside says.
"Most people with anorexia nervosa do not want to die, and most people with severe anorexia nervosa do not see themselves at risk of death. The majority of people with bad anorexia nervosa have significant denial about how severe their illness is."
Woodside was once involved in a study testing deep brain stimulation for severe anorexia. Investigators had hoped to recruit six people with a history of at least 10 years of illness, and at least three unsuccessful attempts at intensive treatments. In the end, 22 people signed on — "22 people who were willing to volunteer for experimental neurosurgery in the hope they would have a better life." About a third made a substantial recovery; another third had some meaningful improvement. For the rest, the brain stimulation didn't touch them. But Woodside has a patient who, after 11 admissions to intensive treatment programs, is now fully recovered. "It took her eight or nine years to recover, but she's fully recovered." She recently had a second baby.
It's not a request they are making in the height of a despaired moment
Gaind worries about the overlap of isolation and poverty. "We know there is so much overlap with all sorts of psycho-social suffering." The people who get MAID when death is foreseeable are seeking autonomy and dignity, he said. They also tend to come from a higher socioeconomic standing.
"But when you expand it to sole mental illness conditions, the entire demographic shifts, and it's people who have unresolved life suffering that also fuels their request," Gaind says. A stark gender gap also emerges: when MAID is provided to the imminently dying, it's a 50-50 gender split. As many men as women seek and get it. Experience in the Netherlands and other countries shows that twice as many women seek and receive MAID for mental illness.
Why that concerns Gaind is that it parallels the ratio of suicide attempts. "Two-to-one women to men attempt suicide in the context of mental illness. Most who attempt suicide once don't try again, and don't subsequently actually take their lives. So, the concern is, are we then shifting this transient suicidality into a permanent death?"
He believes people should have autonomy to make their own decisions. But with depression, "it does affect your outlook on the future. You don't think about the future the same way. You see nothing. And there's that hopelessness."
When the Ontario Medical Association surveyed members of its psychiatry section last year, only 28 per cent of those who responded said MAID should be permitted for sole mental illness as an underlying condition; only 12 per cent said they would support it for their own patients.
Others argue that mental illness can sometimes be irremediable, the suffering intolerable and that competent, capable people have the right to make their own judgements and decide how much uncertainty they're willing to accept. They reject the arguments around vulnerability and that MAID is an "easier" path to suicide. In one study, 21 Dutch people who had a wish for assisted death because of suffering from mental illness said they wanted a "dignified" end of life. "Suicide was perceived as insecure and inhumane, for both the patient and others," the authors write. The people saw "impulsive suicidality" as different from a request for doctor-hastened death. "Suicidality, although sometimes also planned, was perceived as an act out of desperation and crisis; a state of mind in which there is no more room for other thoughts or control over actions. A wish for (assisted dying) was more well considered."
Under Canada's MAID law, people requesting assisted dying for a medical condition can refuse treatments they don't find acceptable. It's not clear whether the same will hold where mental illness is the sole underlying condition. The law also states that intolerable suffering is wholly subjective and personal. It's what the person says it is, and, unlike the Netherlands, a doctor doesn't have to agree.
Under those criteria, Canada could become the most permissive jurisdiction in the world with respect to MAID and mental illness, according to an expert panel of the Council of Canadian Academies.
"We don't force people to undergo treatment in order to realize their autonomy," says Dalhousie University's Jocelyn Downie, a professor of law and medicine. "We don't compel people with cancer to try chemotherapy — they don't have to have tried any if they want to have MAID, because we are basically respecting their autonomy. We're saying, 'You don't have to make that choice, even though many people would think that is a reasonable thing to do, to try these things before you proceed.' But we don't force that." Still, if someone is refusing the most basic treatments, "that to me is a red flag about their decision-making capacity," Downie says. "It doesn't mean they don't have decision-making capacity." But unreasonable decisions can be warning flags a deeper dive is needed.
What will psychiatrists in Canada be looking for? A robust, eligibility assessment process, Neilson says. That any request for doctor-assisted death is one of "durability and voluntariness," that it's a settled one, free of undue, outside influences. That it's not an impulsive wish. "It's not a request they are making in the height of a despaired moment, or at a time when they are vulnerable." That standard treatments have been offered, attempted and failed, with no other reasonable alternatives. That at least one independent psychiatrist expert in the specific disease be involved in the assessment, which is problematic. In many parts of the country, it can be a challenge to find a psychiatrist to treat mental illness, let alone provide an assessment for assisted death.
Assessing competence is, in practice, not as big a challenge as some might think, van Veen says. In the Netherlands, 90 per cent of requests don't end in MAID. "Sometimes they are retracted by patients, but most are denied by psychiatrists." In the CMAJ study, psychiatrists providing assessments described being morally conflicted. Many grappled with doubt: Am I being too early? Am I missing something? "You can't be too rash in helping these people die," says van Veen, of the Amsterdam University Medical Centre. But MAID has also started conversations about the limits of psychiatric treatments.
Those who do seek MAID in the Netherlands often have decades-long therapeutic histories, severe, therapy-resistant disorders that have put them in and out of hospital, again and again. "The repetitiveness, the waxing and waning of psychiatric suffering…. You have some good years, but there is always the fear and danger looming of a new mental health crisis," van Veen says. "These are the patients who are very, very unlucky." They're also tired. "Treatment fatigue is really something that stands out in this patient group."
He does believe it is possible to establish irremediability, incurability, in psychiatry. "I just think it's very challenging." He and his co-authors plea for a "retrospective" view, meaning look at the person's history of failed treatments, rather than the prospect for improvement.
That approach "absolves the psychiatrist from the unreasonable task of making highly accurate prognostic claims," they write. It moves from "this will never get better," to, "everything has been tried."
• Email: [email protected] | Twitter: sharon_kirkey
If you're thinking about suicide or are worried about a friend or loved one, please contact the Canada Suicide Prevention Service at 1.833.456.4566 toll free or connect via text at 45645, from 4 p.m. to midnight ET. If you or someone you know is in immediate danger, call 911.
Canada will soon offer doctor-assisted death to the mentally ill. Who should be eligible?
Canada is still determining who should be eligible for MAID for mental illness, but some experts say it could become the most permissive jurisdiction in the…
