Assisted Dying in Canada is Working Great

A response to the recent AP article

Photo by Jair Lázaro on Unsplash

Update: A previous version of this article cited 2021 data about MAiD support by people with disabilities. I’ve since found 2022 data and updated the text.

A recent Associated Press article by Maria Cheng is getting international attention for raising concerns about Canada’s assisted dying law, which is known as medical assistance in dying, or MAiD. The article, which was also in The Washington Post, attempts to detail a number of issues with the current system. The conclusion, as the article title indicates, is that MAiD in Canada is ‘disturbing’.

The concerns the article raises aren’t new, and neither are the cases it discusses. In fact, strangely, all of the cases it discusses occurred in 2019 or earlier, were reported on at the time, and there are no new facts presented in the AP article. Disappointingly, the article is 2,300 words long and includes little context about why the law is how it is, and there are no quotations from experts who support the law. Since the article brings up many of the perennial concerns about MAiD, it’s worth going through in detail to correct many of the mistakes and to give more context. So here’s my take as a proponent of the current law and a supporter of the upcoming expansion (and even more liberal policies). 

I’ll reference the article without giving all the details it mentions, so please have a look before reading on.

Alan Nichols

The article begins and describes in some detail the case of Alan Nichols, a 61-year-old man who received an assisted death in 2019.  

Mr. Nichols’s family have a number of concerns about his MAiD provision, which they raised in 2019. These include, according to them, that he lacked decision-making capacity necessary to give informed consent and that, according to the article, it ‘appeared’ that a deciding factor in his MAiD assessment was that he had hearing loss. 

Since I don’t have access to his health record or the ability to speak to his healthcare providers, it’s impossible to know what happened with certainty. This is also true of the various experts who still make strong conclusions in the story. However, there is more publicly available information than what’s presented in the AP article, and these extra details paint a different picture.

When a family raises concerns about the circumstances of someone’s death, they ought to be taken seriously. And they were. As the AP article describes, the police did an investigation and found no problems. The British Columbia MAiD oversight unit also did a review and did not refer it for further inquiry. In other words, the safeguards that exist found nothing wrong, which is some evidence that Mr. Nichols did actually qualify for MAiD and received it legally.

Unfortunately, the article leaves out some important context that we have from reporting done in 2019. In particular, Mr. Nichols didn’t want his family to receive medical updates and didn’t want them involved in his treatment decisions, which was his right. As a clinical ethicist, I have been involved in multiple consultations where a patient’s family has been unaware of important details about the patient’s situation or request. Without these details, it’s understandable that the family might misunderstand or come to a different conclusion without all the relevant information. 

Even with all the details, they might have different views than the patient about the appropriateness of an assisted death. This is clearly the case here. Mr. Nichols’s sister-in-law is quoted in the 2019 article saying that “I was appalled by all of it and I said we want this stopped, this can’t happen. Our family doesn’t agree with this.” Since family members can’t override the choices of an adult patient with capacity—would you want your family overriding your treatment decisions?—their disagreement didn’t have a role in Mr. Nichols’s choice, which is the correct result. His sister-in-law also is quoted in the 2019 article as follows: “Alan did not fit the criteria [for MAiD]. Alan was capable of talking, he was sitting up, he was eating, he was going to the bathroom, we were laughing, he was out of bed.” His sister-in-law clearly had a belief about the sorts of people who usually qualify for MAiD, but none of the points she raised concern any of the actual criteria. Perhaps she was imagining that most people who receive MAiD are unconscious, but, since immediate consent is required, such people can’t currently qualify (though they might be able to in the future).

Two other details are mentioned in the 2019 article that don’t appear in the AP story. First, the family says that Mr. Nichols lacked decision-making capacity, so he couldn’t have given informed consent. But the 2019 article says that the family was told that both a psychiatrist and psychologist assessed his capacity. Capacity can be difficult to determine in some cases, and providers sometimes disagree, but two mental health experts agreed in this case that Mr. Nichols understood what he was doing and freely consented.

Second, the AP article says that Mr. Nichols’s MAiD request only listed hearing loss for his medical condition. It says that this ‘appears’ to be true but it doesn’t say what this is based on. Since the family can’t access his medical record, it’s unclear what evidence they’re relying on here. As the 2019 notes, his death certificate lists stroke, seizure disorder, and frailty as the antecedent causes of death. Therefore, it’s unlikely that the physicians used only hearing loss in considering his application. 

These are significant omissions. It’s also disappointing how many experts weighed in and felt they had sufficient evidence to offer an assessment when they also lacked access to the medical record. They should know that a family’s perspective can lack key details that might help explain some of the concerns, and the two investigations address the worries about lack of oversight.

Now, since I also lack access to the medical record and haven’t conducted an investigation, I can’t say with certainty that everything checks out. So imagine that the complete picture is more troubling than it appears. It’s useful to consider what these cases should tell about MAiD legislation more generally. Does the existence of potentially troubling cases justify overturning legalization (which is impossible anyway, since they’re constitutionally protected)? 

The first point to note is that the AP article leads with a MAiD event that happened in 2019 and presents no new information that should change the analysis from the publicly available info in 2019. So, if the concern is that a bunch of troubling cases are occurring, it should be easier to find them. One would expect other families to be coming forward in droves, but this isn’t the case. This is some evidence that the number of problematic cases is in fact quite low.

More generally, we obviously want to prevent unethical acts, especially involving vulnerable people. But we also know that unethical acts transpire in other forms of end-of-life care, or in other aspects of health care, and it would be a mistake to conclude that those other forms of health care should be banned because of rare problems. By analogy, the existence of drivers who break the law doesn’t justify banning driving. To be sure, we are obligated to prevent egregious issues—if an intersection has a fatality every week, then we should fix the intersection—but even if Mr. Nichols’s case was much more damning than it is, that wouldn’t on its own justify changing the law.

We don’t know all the details of Mr. Nichols’s case, but the evidence we have doesn’t point to a serious ethical breach. There’s some evidence that he qualified for MAiD and received it legally. However, even if something clearly unethical or illegal happened, that would justify a review of policies to prevent other similar cases, but it wouldn’t, on its own, show that MAiD ought to be prohibited.

‘Euthanasia’ Versus ‘Assisted Suicide’

The article mentions the distinction between what’s sometimes called ‘assisted suicide’, where the patient self-administers the medication that causes death, and ‘euthanasia’, where the physician or nurse practitioner does so. The term ‘assisted dying’ is usually used to capture both types. There isn’t an ethically relevant difference between the two, but there’s an important ethical reason for permitting euthanasia. Since people with certain disabilities, such as those who can’t swallow or use their hands, are unable to self-administer medication, places that require self-administration, such as American states where it’s legal, discriminate against people with disabilities. In those places, only people without disabilities can have a medical procedure that should be available to everyone, which is discriminatory. Therefore, physician-assisted or nurse-practitioner-assisted forms should also be allowed. As Canada shows, in countries where both are permitted, people overwhelmingly choose for the healthcare provider to do the administration.  

Disability

A central concern raised in the article is that certain types of assisted dying discriminate against people with disabilities, or devalue their lives. These concerns are in part a result of recent changes to Canada’s legislation, so here’s the quick backstory.

The legalization of MAiD Canada was precipitated by Carter v. Canada, a unanimous ruling in 2015 by the Supreme Court of Canada, which struck down the general prohibition on assisted dying. The court found that the general prohibition violated the constitutional protections of adult Canadians when they, first, clearly consent to their death and, second, have a “grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.” In other words, they have to be sick or disabled in a way that can’t be addressed in ways acceptable to them, and the sickness has to cause intolerable suffering.

When parliament passed legislation legalizing MAiD in 2016, they added an additional condition: that the person’s death must be reasonably foreseeable. Some people think that MAiD is more justified, or only justified, when someone is nearing natural death. And some jurisdictions, such as all the American states where assisted dying is legal, require that the patient be likely to die within six months.

But there are legislative and ethical problems with this approach. One legislative problem is that Carter didn’t say anything about proximity to natural death, so the constitutionality of the addition was questionable. Another problem is that ‘reasonable foreseeability’ is exceptionally vague. In one interpretation, all of our deaths are reasonably foreseeable. More narrowly, the law led to providers using different measures, which led to wide variation in practice.

There are also ethical problems. I think the best defence of requiring nearness to natural death goes like this. In some cases, the patient could be cured or will change her mind, so the six-month limit restricts the harm that can occur, since the patient is going to die anyway. 

But now consider the counterfactual. Suppose there are two patients. Patient A is likely to die within six months. Patient B is likely to die within two years. They have the same condition and are experiencing the same amount of suffering, so the only difference is when they’re likely to die. Part of the ethical and legal case for assisted dying is that it prevents suffering, but then why should only Patient A get the relief from suffering and not B? After all, B will experience more suffering by living longer. Therefore, timeframe restrictions are unjustified, since they cause more suffering.

The Superior Court of Quebec ruled as much in 2019, and the federal government decided to change the law instead of challenging the decision in the Supreme Court. The legislative result is that a person’s natural death need no longer be reasonably foreseeable, which puts current law more closely in line with the original ruling in Carter.

An effect of this change is that people who previously didn’t qualify now do, and these people are more likely to be people with disabilities instead of diseases such as cancer (though cancer is still the most common condition of people who seek MAiD). This has led to concerns of the form expressed in the AP article about how the law discriminates against people with disabilities, since they can access MAiD while people without disabilities can’t, which, the argument goes, means that the lives of people with disabilities are less valuable.

To be very clear, the law doesn’t allow anyone with a disability to receive MAiD. One still must have intolerable suffering. Nevertheless, some people with disabilities can get an assisted death while people without disabilities can’t.

My own view on this issue and in health care generally is that we should select the policy that best promotes the values of patients. This is the core of patient-centred care, which is a broadly recognized goal of medicine. For MAiD, this means that we should let people with decision-making capacity decide for themselves what constitutes intolerable suffering and when their lives are no longer worth living. We can’t determine whether someone’s suffering is intolerable to them, so we must leave it up to them. Further, neither a patient’s healthcare team nor the government can determine how to weigh one form of treatment versus another for a patient. This is true throughout health care. Some patients want aggressive treatment to the end; others want comfort care early on. There’s no fact of the matter that’s best for everyone all the time. It depends on what they value.

Some disabilities cause suffering, and, for some people, there aren’t sufficient means to address their suffering. Another person with the same condition experiencing the same amount of pain can decide that it’s tolerable and that continued life is worthwhile. People should be able to make this decision for themselves, and it’s an unjustified form of paternalism to try to overrule them. So it isn’t the government or the healthcare system that is making any claims about the value of different lives. Instead, people are given the option to decide for themselves, and some people with disabilities decide that their disabilities make life no longer worth living.

Notice as well that there’s a different way of resolving the issue, insofar as it exists. If the problem is that the law devalues the lives of people with disabilities because they can access MAiD while others can’t, this would be addressed by expanding the scope of people who can access MAiD. This isn’t necessarily the right way to go, but it shows that the problem is unequal MAiD access, not MAiD itself.

To see a different perspective on disability than the one in the AP article, here’s some more detail on the Superior Court of Quebec ruling that struck down the reasonable foreseeability condition. The two plaintiffs in the case, Nicole Gladu and Jean Truchon, both had disabilities and were arguing that MAiD should be available to them. (Gladu had post-polio syndrome for which pain medication was no longer effective; Truchon had cerebral palsy.) That is, they were making an informed choice that their disabilities caused them intolerable suffering, yet they couldn’t access MAiD because their deaths weren’t reasonably foreseeable. (Gloria Taylor, who was an impetus for the Carter decision, had ALS, which also causes disability.)

The Quebec judge found that the reasonable foreseeability condition was discriminatory against people with disabilities whose deaths weren’t likely to occur soon. According to the judge, the law “deprives both individuals and claimants of their autonomy and their choice to end their lives at the time and in the manner desired, which must, however, remain an entirely personal decision.” Autonomy and patient-centred care won out. Similarly, in Carter, the court found that striking down the prohibition on assisted dying was required on disability grounds. It was a violation of the constitutional rights of people with disabilities that they couldn’t receive an assisted death while people without disabilities could end their own lives.

The story so far is that all the people who have challenged previous MAiD restrictions were people with disabilities, and the courts have so far agreed with their challenges in part based on claims that prior forms of the law discriminated against people with disabilities. 

More broadly, MAiD is very popular among people who self-identify as having disabilities. An IPSOS poll sponsored by Dying with Dignity earlier this year found that 86 percent of Canadians who self-identify as having a disability support the Carter v. Canada decision and 83 percent support the removal of the ‘reasonably foreseeable’ requirement. This is almost identical to support among the rest of the population. A 2021 Gallup poll, also sponsored by Dying With Dignity, found that almost seven in ten Canadians with disabilities supported the removal of the requirement. Since MAiD support has increased over time, the jump is probably partly due to this and partly due to polling differences. 

People who object to MAiD on behalf of people with disabilities are not representing the clear majority.  

Nurse Practitioners: An Interlude

Since the previous section was pretty long, here’s an interlude. In the middle of the AP article, there’s a list of ways Canada is purportedly unlike other places that allow assisted dying. One of them is that “Canada is the only country that allows nurse practitioners, not just doctors, to end patients’ lives.” It’s totally unclear what the upshot of this point is. If there’s a suggestion that NPs shouldn’t be allowed to perform this role, we obviously need to see the argument and some evidence. Otherwise, stop the NP stigma. 

Informing Patients of MAiD and the Case of Roger Foley

Another case mentioned in the AP article is that of Roger Foley, who was alarmed when staff at the hospital he was in asked if he was interested in hearing about assisted dying. Foley decided to record some of his interactions with hospital staff. Now, before we proceed, take a guess at when this story was first reported. In Mr. Foley’s case, we have to go back to 2017, when he made the recordings, and 2018 to find the first reporting.

There are other details I’ll return to, but here’s the general issue.

MAiD has been legal in Canada since 2016, but, according to the Gallup poll I mentioned above, a third of Canadians still don’t know it’s legal. This means that there’s a sizeable chunk of the population that is unaware that they might qualify for MAiD, and some of them will want to know this. Obviously, there’s a balance to strike. Putting up signs around the hospital saying “ask your doctor if MAiD is right for you” could give people the wrong impression, but an absence of communication will deprive people from something they might want. Legally, MAiD is a medical procedure like any other, so hospitals and providers should let people know it exists.

For some, such as Mr. Foley, the mere mention of the existence of MAiD is taken as a recommendation for MAiD. This type of misunderstanding is of course regrettable, and sometimes providers misread the situation or approach it in a way that increases the likelihood of misunderstanding.

If the suggestion is that staff should never bring it up, this is a mistake. The AP article points out that Belgian and Australian doctors are advised not to mention the existence of assisted dying; the article also says that Mr. Foley’s hospital has no policy prohibiting such discussions. 

My view is that providers ought to inform patients of their options, which might include MAiD. It’s quite unlikely that the mere mention of MAiD’s existence would lead a patient to feel compelled to accept it, and the MAiD assessment process nevertheless screens for coercion or manipulation of this sort. There’s nothing unethical about mention MAiD to people who might qualify.

Canadian Patients Aren’t Required to Exhaust All Other Options

The list of alleged unique features of MAiD in Canada includes another point, which is that “Canadian patients are not required to have exhausted all treatment alternatives before seeking euthanasia, as is the case in Belgium and the Netherlands.”

While it’s true that the Netherlands stipulates that there must be ‘no reasonable alternatives’ to have an assisted death, ‘reasonable alternatives’ isn’t defined. (There’s a general lesson here about the use of ‘reasonable’ in the law.) As a review article describes, this condition is interpreted broadly: 

[O]ur data show that a negative attitude of the patient plays an important role in deciding whether or not an alternative is ‘reasonable’, for both physicians and review committees. An interview study with committee members showed that committees frequently have discussions about this requirement but often choose to go along with the patient's refusal.

One type of worry is that a patient might request MAiD in the midst of a condition that causes suffering but will pass. People sometimes say “I was so sick that I wanted to die” and they might actually mean it, but it seems less acceptable for people to get an assisted death when their suffering is temporary.

Canada deals with this by requiring that one have a “grievous and irremediable medical condition” to access MAiD, where ‘irremediable’ is there to exclude temporary conditions that still cause intolerable (though temporary) suffering. Importantly, Carter specifies that “‘Irremediable’ […] does not require the patient to undertake treatments that are not acceptable to the individual.” 

There’s an easy ethical justification for this. First, whether a condition is ‘irremediable’ can be difficult to determine. Additional treatments might prolong or even cure a bout of cancer, but there’s no certainty. Second, as I said above, whether an intervention is worthwhile is a value judgment only the patient can make. Forcing a patient to try multiple options would exacerbate their suffering and violate their right to make decisions in line with their values. Finally, providers must respect a patient’s right to decline treatment, even when it’s life-sustaining. It would be a significant and unjustified departure from standard practice in other healthcare contexts to require patients to try other methods before accessing MAiD.

Therefore, Canada’s approach isn’t unique and, in any case, we shouldn’t require patients to undergo treatments that they find unacceptable. 

Public Funding

The final concern is also mainly a result of the new legislation. There are people who have irremediable medical conditions causing intolerable suffering with needs of various sorts that could be met if more social supports were in place, but those supports aren’t provided, so the person instead opts for an assisted death. 

Sean Tagart, whose case is discussed in the AP article, is one example. He had ALS that required 24-hour care. The government would pay for this care in a long-term care facility, but Mr. Tagart found this unacceptable, since it would require him to be too far away from his son. He instead opted for an assisted death.

As with Alan Nichols, Mr. Tagart died in 2019 and the AP story presents no new information. But there have been other cases with a similar themes. Roger Foley, whom I discussed above, is in this category. Mr. Foley’s condition requires around-the-clock care. He was offered funding for home care, but refuses because he has concerns about the contracted agencies the government used prior to his hospital admission in 2017. Instead, he wants self-directed funding so he can hire his own staff and buy supplies.

The article mentions that Mr. Foley was told that continuing to stay in the hospital would cost him “north of $1,500 a day”. Some commentators said that this doesn’t mean that Mr. Foley himself would have to pay, but he is in fact being charged. Here’s why. The health system determines what level of care a patient requires to ensure that resources are used effectively. When the ethicist told Mr. Foley that he would have to start paying, this was because he no longer required hospital-level care, so it wouldn’t be covered by public insurance. The non-insured cost of this care is around $1,800 a day. Despite being discharged and offered alternative care, Mr. Foley refused to leave the hospital. As far as I can tell, he’s still there. Since the hospital isn’t being reimbursed for their services by the government, they started charging Mr. Foley the daily rate.

Since we’re covering the list of stories on this area, here’s another the AP article doesn’t mention. Earlier this year, a 51-year-old Ontario woman with multiple chemical sensitivities (MCS) had an assisted death after being unable to find affordable housing that didn’t trigger her environmental allergies. She lived in a building owned by the Salvation Army, but, after they changed her bedroom to prevent external air from getting in, her landlord declined to add air conditioning and heating to her room. Ontario doesn’t have a program for helping people in this situation, so, after trying for years to find another place she could afford and being unable to, she opted for an assisted death.

In all of these cases, there are funding changes that could address these problems, insofar as they are problems. The Ontario woman couldn’t afford a place that met her needs, which is a serious shortcoming. In Mr. Tagart’s case, he had a strong preference for staying at home instead of going to long-term care (which would have been funded), and some people might support increased home-care funding for people in his situation. In Mr. Foley’s case, the government could give him the money to spend as he wishes, though, in my view, it’s not an injustice that they haven’t. (It’s also not an obvious injustice to me that Mr. Tagart’s home care wasn’t funded. 24-hour home care is expensive, and the government can’t pay for everyone to have it, so it might be reasonable for the government to offer institutional care in some situations.)  

Notice that it’s possible to support increased funding in these cases without being committed to preventing these people from accessing MAiD. While experts such as University of Toronto professor Trudo Lemmens, who objects to MAiD in just about every article ever written about it, argue that such cases show that MAiD expansion is a mistake, this doesn’t follow. After all, both Mr. Tagart and the Ontario woman chose MAiD when they could have kept living. They obviously weren’t opponents of MAiD access. In the system where MAiD was unavailable, they would have continued to endure intolerable suffering without relief, so their own choices show that it’s better that MAiD was an option.

Instead, these cases show a failure of social support, not an overly broad MAiD regime. MAiD access makes the other failures more salient, but that isn’t evidence that the problem is with MAiD, or that prohibiting MAiD in these cases would be better.

Mr. Tagart’s case shows the importance of retaining access to MAiD. He was offered institutional care, but declined because it would take him away from his son. A Facebook post following his death said that “The few institutional options on hand, Sean pointed out, would have offered vastly inferior care while separating him from his family, and likely would have hastened his death.” 

I admit that I don’t completely follow this reasoning. He said that relocating to the facility would have been a ‘death sentence’, since he believed it would have led to lower quality care. It does seem a bit strange to then opt for an assisted death, but perhaps staying at home allowed him to maximize the amount of quality time he had with his family while MAiD gave him an escape from his intolerable suffering. This was his choice to make, and the circumstance where everything remained the same but MAiD was prohibited would have been worse. 

The AP article inaccurately says that “some disabled Canadians have decided to be killed in the face of mounting bills.” Mr. Tagart decided to die because the alternative—living in long-term care away from his family—was unacceptable to him. He wasn’t facing medical bankruptcy. The Ontario woman with MCS couldn’t afford suitable housing, which isn’t the same as facing mounting bills. 

In the case of Mr. Foley, it’s completely fine that he was informed that he’d be charged for the care he was receiving. In fact, it would have been wrong not to tell him. It’s also ethically acceptable for him to be charged, since he was offered another option that met his needs but refused. He’s now using hospital resources that other people need more.

One might think that the best approach is to limit MAiD until these other problems are addressed, but this similarly doesn’t follow. Denying people access now for the sake of improving the situation of others in the future is to cause them additional suffering as a means to benefiting others. Even if this approach would work, it’s wrong and unconstitutional.

How Disturbing is MAiD?

The AP article describes cases and features of the law that are meant to show that assisted dying in Canada is ‘disturbing’. As I have shown, the real situation is far less troubling. Maria Cheng, the article’s author, not only fails to include new reporting on the three cases she describes, she leaves out important details.

The article contains a multitude of other inaccuracies and misrepresentations that could have been easily addressed had Ms. Cheng quoted (or spoken to?) other experts on MAiD. Failing to give the mainstream view represents a slant that is unjustified by the facts on the ground.

Assisted dying is a human rights accomplishment that is hugely popular in Canada and is quickly spreading in the United States and other parts of the world. People want to be able to choose the manner and timing of their death, and it isn’t the place of family members, human rights experts, healthcare providers, or the government to tell people how they ought to value their lives. As with anything in health care, issues will arise that demand careful investigation to protect people, but, if anything, the AP article shows how difficult it is to come up with examples of troubling cases in Canada. We should take comfort in this.