Valentina Romano reasons that allowing future-oriented medical assistance in dying requests by persons with dementia may be at odds with respecting their personhood.

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Currently, Canadian law does not allow for advance requests for medical assistance in dying (MAiD) because the patient’s capacity to consent at the time of the procedure and a reasonably foreseeable death are eligibility criteria for accessing MAiD. Yet, many people argue that “advance directives” should be allowed for patients with dementia.

Typically, the conversation about dementia-related advance directives for MAiD centers on dignity. However, bioethicist and legal scholar Rebecca Dresser argues for a shift towards a philosophical focus on personhood. She highlights the crucial disconnect between the person’s past self (without dementia) and present self (with dementia). The anticipatory, speculative nature of the dementia-related advance directives for MAiD emerges as its most problematic aspect. Specifically, since dementia patients effectively become different persons through the disease, a prospective end-of-life decision made through an advance directive affords too much power to the present person and none at all to the future one. It should be noted that the same issue would arise for advance directives as they relate to any disease causing deterioration in the capacity to consent.

Dementia patients slowly become different persons as a consequence of their disease. Personhood is shaped by experiences, beliefs, desires and interests, all of which can be affected by the cognitive deterioration that dementia causes. Dresser’s work suggests that people living with dementia are instead concerned with the tasks of the present moment, and the past is but a long forgotten alternate life. Often what is most troubling about a dementia diagnosis is coming to terms with its frighteningly transformative powers.

Image Description: Image of old woman’s face, looking into the distance. A clock face, displaying 9:45 is beside her. The image of the woman and clock are faded and on a backdrop of a white brick wall .

So what is particularly worrying about advance directives is that they require a patient to look forward into an unpredictable future. In order to implement an advance directive, a patient must be competent and informed to give consent. But being sufficiently informed about one’s future experience of dementia seems implausible given that dementia is enigmatic and unpredictable. Despite its prevalence, dementia mysteriously affects each person differently. Late-stage experiences often do not match those that the patient had predicted when giving an advance directive for MAiD; symptoms turn out to be radically different than initially anticipated. Indeed, it is impossible to know for sure what life will be like with dementia. Predicting how one will fare in the future, with an altered psyche and a radically abated mental capacity, is an unreliable basis for end-of-life wishes. For a person facing dementia to make a life-ending decision for a future self is more equivalent to that patient making such a decision for a complete stranger. This is, in my mind, the most problematic aspect of advance directives for dementia-related MAiD. By the time they are effective, advance directives for MAiD are to implement wishes that may be utterly irrelevant and completely forgotten by the late-stage demented patient.

With a view to the personhood dilemma, one particularly alarming situation would arise if a non-communicative dementia patients’ present interests are different from their previously expressed wish for MAiD. Late-stage dementia patients lose the ability to communicate to others. They may be content with their current life but may have previously signed an anticipatory request for MAiD. If such a patient cannot express her desire to stay alive, the patient’s family and clinician must work from the patient’s last known requests rather than her more current and therefore more relevant wishes. Their decision may be informed partially by observing the patient’s current quality of life and partially by the patient’s past expressed wishes to die. However, patients with dementia, especially those at later stages, are likely to lose many past memories, including their wish to access MAiD. Indeed, they may also have a current wish to continue living.  This situation sheds light on how difficult it can be to reconcile dementia and MAiD. A patient who no longer remembers his or her previously expressed end-of-life wishes, is not motived by, and might not care about what he or she previously wanted.

In conclusion, legalizing dementia-related advance directives for MAiD is problematic because the justification rests on the assumption that dementia patients are simpler, faded versions of the healthy persons they once were. In reality dementia patients are not abridged versions of their past selves; they are different persons facing new challenges with a different set of interests. The ‘new’ personhood brought on by dementia invites a new life, perhaps frighteningly different from one’s past life, but one that deserves a chance, nonetheless. If advance directives for MAiD become legalized for dementia patients, they may ultimately serve to stifle the potential for a meaningful life with dementia, with its inherent fluctuating moments of suffering and happiness. It is with this hopeful perspective that the debate surrounding dementia-related MAiD should be approached.

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Valentina Romano is a JD Candidate in the Faculty of Law at the University of Toronto.

This reflection was originally written for the University of Toronto Health Law, Ethics and Policy Seminar Series.