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When should people be legally allowed to seek medical aid in dying? It’s an important question that often provokes strong emotion and fierce argument.
A growing number of states in the U.S. and countries around the world have begun to legalize or expand the practice of medical aid in dying, also known as MAID. MAID is defined as permitting a medical provider to prescribe medication to a patient so they can end their own life (it’s sometimes mistaken for euthanasia, but the two differ; euthanasia typically involves a doctor actively ending a patient’s life and is less commonly practiced). MAID programs have strict criteria for eligibility, typically requiring people to have been diagnosed with a severe illness that has a prognosis of less than six months. A common scenario might involve someone with late-stage cancer.
But there are critics of MAID who are worried about the loosening of these criteria, and the dangers that might come with it. In countries like the Netherlands, for instance, people have sought and been granted MAID or euthanasia on the basis of mental suffering alone. In other cases, people have obtained MAID for conditions that cause excruciating suffering but aren’t considered terminal, such as myalgic encephalomyelitis/chronic fatigue syndrome.
Critics have argued that, as these programs have expanded, these cases have and will become increasingly normalized. Some people will further argue that medical providers in MAID-approved countries will be incentivized, even unknowingly, to push it onto people who are disabled, poor, and/or vulnerable, rather than to only provide the option to people who will most benefit from it, such as the terminally ill. Proponents, on the other hand, often argue that overly strict guidelines will gatekeep MAID from many people who reasonably deserve the opportunity to choose such a path (including those with disability) and who would otherwise suffer needlessly.
The fears of a slippery slope effect have had a tangible impact. Last year, the Canadian government postponed its planned expansion of MAID that would have allowed people with only mental illness to apply until 2027, following earlier delays. In explaining the move, officials cited needing more time to ensure that the country’s health system could adequately evaluate these complex cases.
Last December, researchers in the U.S., Canada, and Europe published a study in JAMA Internal Medicine dedicated to understanding the positives and potential negatives of MAID. Analyzing records from 20 different jurisdictions where MAID is practiced, they tried to answer a simple question: exactly who is choosing and being allowed to receive MAID?
Gizmodo reached out to one of the authors of this study, James Downar, who is head of the division of palliative care at the University of Ottawa’s department of medicine. We spoke to Downar about the study’s findings, its larger implications, as well as what the future of MAID might look like.
The following conversation has been lightly edited for grammar and clarity.
Ed Cara, Gizmodo: What was your study trying to explore?
James Downar: Now that MAID is legal in more than two dozen jurisdictions, we have a lot of data about the people who are receiving MAID around the world. Opponents of MAID have expressed concern about the potential for MAID to be driven by external factors such as coercion, poor service availability, and structural vulnerability. However, every jurisdiction that has published data about MAID recipients have shown that the large majority were people with cancer or amyotrophic lateral sclerosis (ALS; also known as motor neuron disease), even if these conditions account for only a minority of all deaths.
In this study, we wanted to look at the proportion of people with different types of illness (e.g. cancer, heart disease, ALS) who receive MAID at the end of life rather than die naturally. We found that people with ALS (17%) were the most likely to receive MAID, followed by cancer (3-4%), and then other conditions (e.g. heart disease) were far less likely to receive MAID (<1%). The absolute numbers and percentages were different across jurisdictions, but the relative rates of people receiving MAID were remarkably similar across jurisdictions. The relative differences between diseases was far greater than the relative differences between jurisdictions, or the differences associated with any sociodemographic factor (which has been studied in other studies).
Gizmodo: There’s been a heated debate over whether MAID laws in certain parts of the world, including Canada, are causing a slippery slope, where people who may still benefit greatly from medical interventions are instead being increasingly encouraged to die. Is the overall data showing signs of that happening?
Downar: Our research suggests that the underlying disease or disease-related factors are by far the most important factors in determining whether someone receives MAID. This suggests that there is some type of suffering or situation that is particular to diseases like ALS and cancer that drive requests for MAID, and that this sort of suffering or situation is far less common for other conditions. ALS and cancer have little in common as illnesses aside from their trajectory—they both tend to have a high level of baseline function, but then a relatively rapid, progressive and accelerating loss of function in the final weeks or short months of life. Other conditions (heart disease and frailty) progress more slowly, and are generally only diagnosed after there has already been a slow decline in function.
This is important because overall, people with cancer and lung or heart disease have similar symptom severity and quality of life as they approach the end of life, but people with cancer have generally lower support needs and much better access to services than people with heart and lung disease. So if high support needs or poor service access were driving MAID, we would see people with lung and heart disease getting far more MAID than people with cancer—the opposite of what we are actually seeing. Moreover, if societal attitudes like ableism were driving MAID, we would see much higher rates among lung and heart disease, as these conditions cause disability for much longer and to a greater degree than cancer.
I have seen absolutely no indication that people are foregoing beneficial treatments in favor of MAID. Most people who receive MAID are already followed by palliative providers for some time before requesting and receiving MAID, and are considered to be in the final weeks and months of life. There are certainly cases where people are refusing treatments that have the potential to prolong life, because the treatments have side effects that the person is unwilling to endure or the degree of life prolongation is small enough that the patient is not willing to endure the side effects or need to come to hospital to receive them. This is actually a pretty common scenario for people followed by palliative care providers, and is a decision taken by many people who are not asking for MAID.
So to be clear, there are two distinct decisions: (1) a decision about whether or not they want to continue with the treatment; and (2) a decision about whether they want to allow a natural death or receive MAID. It is never a decision to pursue MAID rather than a life-prolonging treatment.
I am also very skeptical that people are being “encouraged to die” at all. I am aware of one claim in the media that this happened, but the transcript from that interaction (the patient recorded it) clearly showed that the staff person was discouraging the person from ending their own life. Data from Canada also shows little decline in the aggressiveness of treating illnesses like cancer at the end of life, as measured by new chemotherapy starts in the final month of life, or ongoing chemotherapy in the final weeks of life. This is a metric we have tried to reduce for years in every country in the world—it is considered a marker of poor care. Palliative care providers everywhere in the world would like it to go down, and we would interpret that as a positive outcome.
Gizmodo: Are there things that could be improved within current MAID systems? Do we need more safeguards to prevent issues of abuse or exploitation, either now or potentially in the future?
Downar: I believe that Canada’s safeguards are appropriate and, according to all the data we have, working very well. The people accessing MAID are disproportionately privileged by any structural measure (wealthy, educated, white/majority culture), with incredibly high use of and access to palliative and disability supports. Compliance reports show that substantial procedural violations or eligibility concerns are very rare (eight out of 23,000 cases in Ontario, where every single case is reviewed by the Coroner’s office). The challenge in any system is balancing safety with access, and in many jurisdictions, there is a nearly universal complaint that people have tremendous difficulty accessing MAID. That should not be considered a sign of success.
Gizmodo: Where do you see MAID going from here? And how do we ensure the best quality of care for people who may be at the end of their lives?
Downar: There are ongoing discussions about eligibility criteria in Canada, as there are in many countries. I think every change in the law must be considered on its own merits based on the data and the practice and values of that jurisdiction. There is no “correct” set of laws for every jurisdiction. The main focus should be, regardless of MAID laws, identifying and supporting the discovery of better treatments for the type of suffering that people experience when they have incurable illness—symptoms, psychological/existential distress—the effectiveness of our treatments for many of these problems is modest. It is not simply a case of improving the availability of existing approaches.
