A few weeks ago, I wrote a post about being offered medical assistance in dying (the acronym is MAID) by my doctor. MAID includes either choosing to end your life with medical help (suicide) or asking to die by medical procedure (euthanasia). The doctor made the offer during a meeting in which he gave me a prognosis of “months, not years” to live.
This post sets forth my views on MAID. I believe there are extreme circumstances that can justify it. But I worry that some patients will choose MAID because they cannot get adequate mental health or palliative care. I welcome your comments.
In the 2015 Carter v. Canada decision, the Canadian Supreme Court held that Canadians had a right to medical assistance in dying in specified circumstances. The criteria that qualify you for MAID have been spelled out in a series of laws passed by Parliament in response to Carter. Canadian law says that you have a right to MAID if you are: (1) a competent, consenting adult who (2) has a grievous and irremediable illness that (3) causes enduring and intolerable physical or psychological suffering that cannot be alleviated under conditions you consider acceptable, and (4) you must be in an advanced state of irreversible decline in capability. The law does not require that a person’s natural death be imminent.
Some readers may oppose MAID because they believe that there are no circumstances that justify killing. But really, no circumstances? The 1549 Book of Common Prayer renders the Sixth Commandment as, “thou shalt doe no murder.” “Murder” matters here because it recognizes exceptions, cases where we can justifiably kill, for example, in self-defence. Are there cases where MAID is justified? Physicians tell me there are patients in constant, unendurable pain, whom they cannot help, and who want to die. In these dire cases, a physician’s duty to relieve suffering conflicts with her duty to preserve life. She must choose which duty takes priority. I believe that for a patient in extremis, and as a last resort, MAID is not murder. This account of when MAID is justifiable is narrower than the current Canadian definition.
MAID deaths in Canada have increased from 1,018 in 2016 to 10,064 in 2021, an almost 10-fold increase in six years. The growth is steep and follows a straight line, with no sign of slowing. Twice as many Canadians died by MAID in 2021 than all suicides combined. Designing and evaluating suicide prevention programs are parts of my professional work; I cannot get this number out of my head.
Journalists also report cases of persons who were offered MAID when they could not obtain other medical care that might have reduced their suffering. Likewise, there’s a report of a patient who sought MAID because they could not get adequate housing.
If this happens, it matters. In 1999, the ethicist Judith Jarvis Thomson published a defence of physician-assisted suicide. She argued that patients’ right to liberty entitles them to MAID, and her paper attacked several arguments against this view. She noted, however, that
even if these are bad arguments, there may be others that are better. Many people oppose the legalizing of physician-assisted suicide on the ground that (as they think) there is no way of constraining the practice so as to provide adequate protections for the poor and the weak. They may be right, and if they are, then all bets are off.
All bets are off if a patient seeks MAID because he cannot get needed medical care, food, or housing. The choice to die quickly and painlessly versus slowly in agony benefits the patient only if no better alternatives exist. That patient isn’t at liberty; he’s being coerced. And when MAID occurs through coercion by circumstance, MAID becomes murder. Murder by the system, in my view, although the MAID provider may be an unwitting accessory.
However, are marginalized persons dying by MAID because they are not adequately protected? No, according to evidence presented to the Canadian Senate panel that recently reviewed MAID. The reason is that so far, the uptake in MAID has occurred primarily among affluent Canadians, people who supposedly have sufficient access to good mental health and palliative care. From this, MAID advocates have concluded that we must work harder to make MAID accessible to the marginalized. The Senate panel did not notice that if MAID is currently offered primarily to the well-off, we have no evidence about what will happen when MAID becomes available to the “poor and weak.”
Journalists have also reported on patients who received unsolicited offers of MAID, including Canadian Forces veterans seeking treatment. My case was likewise an unsolicited offer of MAID. I had never told the surgeon – or anyone else – that I could not endure my suffering. Moreover, at no point in our conversation did he ask about my suffering.
Why, then, did the surgeon do it? I believe he offered me MAID because he was presenting suicide or euthanasia as standard treatments for incurable cancer. I am a medical school professor, and I’ve helped teach a course on the doctor-patient relationship. We train medical students to tell patients about all the treatments that would benefit them. It’s the patient’s body, and patients should decide what happens to it. What’s shocking here is that MAID was on the standard list rather than a last resort when all other options have been tried and failed.
The Canadian Association of MAID Assessors and Providers sees things differently. Their concern is that many Canadians do not yet have access to MAID. To remedy that, they believe MAID should be a standard option for patients like me.
…clinicians are gatekeepers to the healthcare system and in certain circumstances are professionally obliged to bring up MAID as a clinical care option to patients for the sake of patient autonomy and fulfillment of informed consent requirements. This conversation should arise and be incorporated… when the patient has a grievous and irremediable medical condition. In these cases, clinicians have a professional obligation to their patients to bring up MAID.
I work at a children’s hospital just a few hundred meters from the cancer centre. Our hospital screens every adolescent admitted to the hospital for suicide risk, not just those for whom we have a prior reason for concern. We do it because a youth suicide is an unacceptable outcome, but thankfully, it’s a rare event.
Suicide rates among adults, however, are twice those for youths. When considering adults with cancer, you need to double the risk again. It has been known for decades that cancer patients have a high risk of being depressed, and depression is also a risk factor for suicide. One of the highest-risk groups is oropharyngeal cancer patients – my specific diagnosis. Think about everything you need to do with your throat, then imagine that every swallow or cough led to a stabbing pain projecting through your head and neck.
Moreover, it’s not just that having cancer increases your risk of suicide; simply being told you have cancer can have health consequences. The Swedes keep meticulous health records, and researchers studied 6 million Swedes in 15 years of national data. They found that the risk of cardiovascular death – heart attacks or strokes – was more than five times higher during the week following the diagnosis compared to a matched sample of undiagnosed Swedes. Being told that you have cancer doesn’t suddenly clog your arteries. Instead, the trauma of receiving the diagnosis precipitated a cardiovascular crisis among people already at risk of a heart attack.
However, the most striking health effect of getting a diagnosis was that the risk of suicide was an astounding 12.6 times higher during the week following diagnosis. The acute health risk from learning you have cancer declines over time. Nevertheless, the relative risk of cardiovascular or suicide was three times higher over the first year following the diagnosis. I haven’t found a study on what happens when a patient who, like me, already has a diagnosis and then receives a terminal prognosis. Still, it’s reasonable to assume that receiving a terminal prognosis could be traumatic in the way a cancer diagnosis can be. My surgeon should not have discussed MAID in the same meeting in which he gave me the prognosis.
The upshot is that many cancer patients suffer from depression and that, as a group, we are at high suicide risk. You might imagine that if a patient was depressed or suicidal, surely a physician or nurse would notice. Unfortunately, decades of study of depression and suicide have shown that patients rarely volunteer this information. If clinicians do not ask, they will not find out. So, you would think that cancer physicians and nurses would follow protocols for suicide prevention in their routine care, as we do at the children’s hospital. You would expect mental health care to be well-integrated with cancer care in every cancer centre.
But you would be wrong. Since my diagnosis, I have had scores of visits to cancer clinics. No one has screened me for suicide risk. No one has evaluated my mental health. However, they found the time to offer me MAID. There will be no patients with untreated depression in your centre so long as you do not look for them.
Given the evidence, why aren’t mental health care and suicide prevention integral to cancer care? A psychiatrist colleague believes that the problem is how oncologists think: “If they can’t see a mental health problem on a CT scan, they don’t think it’s real.” Medical subspecialists are frequently chided for focusing on a single organ or disease when they should “take care of the whole person.”
Well, yes and no. Cancer doctors and nurses are highly trained in the skills needed to combat cancer. There are too few of them, given the number of cancer patients. When I was first diagnosed and received a recommendation for radiotherapy, I looked up the number of radiation oncologists in the province and the number of new radiation patients yearly. It was clear that each of these physicians had an overwhelming caseload. They do not have time to treat the patients on their caseload if they spend time inexpertly practicing psychiatry. Mental health problems should be treated by people who know how to do that.
But Canada doesn’t have enough mental health clinicians to care for all the cancer patients with unrecognized depression. Waiting times to get mental health services are measured in months and vary depending on where you live. In Ontario, psychiatrists are concentrated in Toronto and Ottawa. But the province is bigger than Texas, and there are few psychiatrists anywhere else. While getting my immunotherapy treatment, I once spoke to an oncology nurse about depression and cancer in the chemotherapy unit. “No one seems to ask patients about depression, but as a psychologist, when I look at faces in this unit…” “I know,” she said, “but who would I call?” Why should she ask her patients about depression if no one in the mental health system can answer the phone? The claim that cancer patients at the end of life have adequate access to mental health care doesn’t withstand scrutiny.
Similar concerns apply to the belief that cancer patients have adequate access to palliative care at the end of life. A report from the Canadian Institute for Health Information concluded that
Estimates suggest that up to 89% of people who die might have benefited from palliative care. However, a substantial proportion of Canadians were neither identified as having palliative needs, nor as having received palliative care in their last year of life.
A 2015 report found that there were only 275 physicians specializing in palliative care in Ontario, of whom 145 only worked part-time, and 96% of whom were in the cities. That’s about two full-time equivalent palliative care physicians for each 1,000 annual provincial deaths. It is not credible that we have enough palliative care clinicians to care for all cancer patients at the end of life.
In summary, there are in extremis/last resort cases where MAID is justified. But it should never be viewed as a standard option for end-of-life care. Efforts to expand access to MAID are misguided and dangerous when so many Canadians lack access to adequate mental health or palliative care.
It should be noted that 80% who received MAID in Canada had received palliative care beforehand: https://www.canada.ca/en/health-canada/services/medical-assistance-dying/annual-report-2021.html#table_4.4
One retort to this would that this doesn't specify the exact type of palliative care patients received (and it's true that it's a limitation of the report). At the same time however, there isn't an implication that the care received was sub-standard. When you look at Belgium, Oregon, and New Zealand for example (I don't know what the percentage is for patients in the Netherlands, Switzerland, Australia, or the other various US states that legalised MAID) you also see that the great percentage of patients who received assisted-dying underwent palliative care beforehand.
In Belgium approx 71%: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5758933/
In New Zealand approx 74%: https://www.health.govt.nz/our-work/life-stages/assisted-dying-service/assisted-dying-service-data-and-reporting
In Oregon approx 90%: https://journals.sagepub.com/doi/abs/10.1177/1049909111418637
I truly believe that given from all the evidence so far, that even if 99% of MAID applicants were receiving the very best palliative care most MAID requests wouldn't be rescinded. Why? Because pain isn't one of the top reasons why people request assisted-dying in the jurisdictions that have legalized it. Loss of autonomy, loss of dignity, and inability to engage in the activities they find to be enjoyable are by far and large the most common reasons. Palliative care is primarily about symptom management, which doesn't target this.
https://jamanetwork.com/journals/INTEMED/articlepdf/414824/ioi80188_489_492.pdf
Thank you for this piece. The offer of MAiD by your oncologist reminded me of what appeared to be an approval based on a very limited and in some significant ways, completely wrong, knowledge of my father. I wrote the experience here. https://christopherlyon.substack.com/p/dying-indignity
I'm also concerned about who is attracted to providing MAiD. It's one thing to feel that ending the life of someone in extremis is perhaps a benefit to them, but quite another to want to involve themselves in ending the lives of people who are not dying and/or children, and who express personal gratification as a result. If we propose screening patients of suicidality and mental illness, we should do likewise for clinicians wishing to involve themselves in MAiD.