Canada is facing the critical question of when people should be permitted to plan the end of their lives through medical assistance in dying (MAiD).

The federal government is consulting Canadians on whether to allow advance directives that would grant individuals — perhaps years in advance — the right to choose their deaths in a future where they might no longer be capable of making or confirming that decision.

MAiD currently allows individuals to seek an assisted death if they are suffering intolerably, with no hope of relief, and have the mental competence to consent to ending their lives. Advance directives shift the timeline and seem like a logical next step. If we respect your decision to die now, why not respect your decision to die later even if you’ve lost the ability to consent?

Better MAiD oversight is needed to protect patients

Reality, not religion, is the reason people need MAiD-free health care

When is suicide considered “rational”?

Our legal and bioethical traditions rely heavily on reasoning that identifies similarities between different situations to make decisions or solve problems. This can help ensure fairness and consistency. But doing so in the case of MAiD risks glossing over difficulties with making a request now to die in the future.

This imposes a past self’s instructions on a future self who can no longer give or withhold consent, and whose best interests may not always align with past wishes. There is also a risk of endorsing ableist, that is discriminatory, assumptions about which lives are worth living — all under the guise of respecting the right to choose.

The problem with advance consent

Justification for MAiD has always relied on someone’s current capacity. When patients, in full possession of their faculties, conclude that their suffering is intolerable, Canadian law respects their choice to end their lives. This legal framework is controversial and is being challenged in court because it is seen as discriminatory toward people with disabilities.

The strongest argument in favour of the current framework is that a patient’s free will anchors the decision. But cases of people with non-terminal conditions seeking MAiD for “social reasons” are pulling on that anchor.

Advance directives further strain it. They suppose that the wishes of a past self — articulated when a person was healthy or at least mentally competent — remain decisive when the future self cannot confirm or deny those wishes.

This shift risks treating severely cognitively impaired individuals (such as people with advanced dementia) as objects of past instructions rather than as subjects who still merit a fresh assessment of their present well-being.

Respecting the will of a past self, who may have harboured fears of dependency or internalized ableist views about disability, does not guarantee that ending the future self’s life reflects what that person would want if able to understand a new reality.

Experiencing an illness first-hand brings insights that a previously healthy person may not have had. Some specialists in the protection of vulnerable older patients therefore ask whether advance consent can ever be fully informed.

From pain management to death-as-benefit

It is one thing to respond to physical or emotional suffering with palliative care, social support or easing of pain. It is another to treat death itself as a kind of “pain management.” When we uncritically let comparisons guide us, we risk the assumption that death can be a “benefit” to patients who never explicitly requested it in their current, altered state.

Consider how we respond to patients — including infants or individuals with severe intellectual disabilities — who cannot articulate their wishes. Compassionate medicine addresses their pain through analgesics, sedation and comfort measures. Almost everyone agrees that severe physical pain is undesirable. By contrast, ending a life presupposes a far more contentious assumption — that a person’s life is “worse than death.”

This notion of death as benefit is not medically verifiable like pain levels. The leap from “this patient is suffering” to “this patient would be better off dead” is enormous.

It involves beliefs about identity, dignity, the meaning of life and perhaps even the afterlife. Such leaps are perilous. We can, with some confidence, say that relieving pain is good. But can we say with the same level of confidence that ending a life is good for someone who cannot give consent?

Ableism and the distortion of suffering

Disability organizations have expressed concern that advance directives may legitimize ableist assumptions. People’s past fears of living with dementia or severe disability can be riddled with an exaggerated idea that such lives are unworthy or devoid of meaning. Research and experience show that many people with significant cognitive or physical limitations adapt, find new sources of joy and continue to value their lives.

Relying on advance directives risks making the past self’s dread the decisive factor. The reasoning might be: “I would not want to live if I did not recognize my children” or “I would not want to live with profound disability.”

Such statements often reflect cultural stigmas, not objective truths. Yet our laws could be changed to treat them as binding and overriding the present person’s well-being — merely because that person cannot voice a different perspective now.

The expansionist logic: A cautionary tale

Once we accept that a past directive can permit ending the life of a cognitively impaired person, we begin to rely on our own (or a past self’s) interpretation of what counts as intolerable suffering and a life not worth continuing.

This opens the door to further expansion. If we can do it for dementia patients who have left instructions, why not do it for others who have never given instructions but would “surely” be better off not living in their current condition?

This risks normalizing judgments about living with disabilities and diminishes the role of a patient’s present experiences. We cannot know whether what was once “intolerable” to the past self has indeed become intolerable to a person in the here and now — especially given that many forms of suffering can be managed. The emphasis should be on improving palliative care, not on taking the radical step of ending life.

A time for sober second thought

Advance directives for MAiD may feel comforting to many healthy Canadians who fear a future of cognitive decline and loss of control. But policy should not be driven solely by the anxieties of the currently able-bodied.

We must also consider the ethical complexities, the risk of embedding ableist assumptions, the leaps we make and the risks we take in declaring death a “benefit” to someone who cannot consent.

How can we ensure that expanding the criteria for MAiD doesn’t codify prejudice into law? What concrete medical and social measures are made available to ensure that people’s suffering does not become intolerable?

Advance consent is a useful concept, but it is not morally equivalent to a current, fully informed and self-determined request for MAiD. This is especially important in a medical-legal environment still shaped by stereotypes about disability and aging.

Nor should we blur the line between active euthanasia and refusing burdensome treatments, or view the realities of advance and terminal dementia as being one and the same.

If we open the door to advance directives for medical assistance in dying — without careful scrutiny — we risk normalizing the idea that death is an acceptable stand-in for compassionate care and social measures. It’s a path that demands honestly confronting the moral differences at stake.

Do you have something to say about the article you just read? Be part of the Policy Options discussion, and send in your own submission, or a letter to the editor. 
Jonas-Sébastien Beaudry

Jonas-Sébastien Beaudry is an associate professor at the faculty of law and the School of Population and Global Health at McGill University, where he holds the Canada Research Chair in Health, Inclusion, and Policy. His work spans health law, bioethics, disability studies, and human rights. He is the author of The Disabled Contract: Severe Intellectual Disability at the Margins of Justice and Morality (Cambridge, 2021).

You are welcome to republish this Policy Options article online or in print periodicals, under a Creative Commons/No Derivatives licence.

Creative Commons License