Dying with Dignity, an advocacy organization that seeks to improve the quality of dying and expand end-of-life choices, is urging legislators to provide people diagnosed with dementia with the ability to make advance requests for assisted death, while they still have the decisional capacity to do so.

Dying with Dignity began advocating for such a provision this week, alongside their announcement of the results of a public opinion poll it commissioned on assisted dying. The poll found that 8 in 10 Canadians support the right to advance consent for assisted dying – or, more specifically, 85% of poll respondents support the Supreme Court’s decision in Carter v. Canada, and of those, 90% support allowing patients with a diagnosis of a grievous and irremediable medical condition to provide advance consent for physician-assisted dying.

Dying with Dignity states patients with dementia face currently face a difficult choice: either ending their lives too early, while still of sound mind, or losing the option of assisted death altogether as a result of loss of capacity to make that decision. As legislators work to create provisions governing physician-assisted suicide to meet the Supreme Court’s revised date for the declaration of invalidity of the Criminal Code ban (now June 2016), the organization urges them to take this difficult situation into account.

Currently in Ontario, both the College of Physicians and Surgeons of Ontario draft guidelines for physicians, and the Superior Court’s Practice Direction regarding applications for an exemption to the Criminal Code prohibition (allowed by the Supreme Court in the recent Carter v. Canada decision, 2016 SCC 4) require the patient to provide informed consent at the time of the request. In other words, those seeking assisted death must possess the capacity to make that medical decision.

A further wrinkle with advance consent exists in the Superior Court’s current Practice Direction, which requires evidence that the applicant is aware that his or her request for a physician assisted death may be withdrawn at any time, and that even after judicial authorization is granted, the applicant may choose not to pursue assisted suicide. Such safeguards to ensure free and informed consent would not be present for those consenting by advance directive.

The decision to require contemporaneous informed consent is, in part, a response to the Carter decisions themselves. Consent, and capacity to consent, were major concerns for the British Columbia Supreme Court, at the trial level, and by the Supreme Court, as the courts considered whether it was possible to effectively protect the vulnerable “from being induced to take their own lives in times of weakness,” without an absolute prohibition on physician-assisted dying.¹

The court found that it was, but in the process of so finding, the BC trial court heard evidence from a number of experts on the issue of depression in the face of terminal or irremediable illness, and the effect of depression on one’s decision-making abilities. The court also heard of the risks of undue influence on those made vulnerable by illness. The court found it was possible for physicians to apply the informed consent standard to patients who seek assistance in dying, but that physicians should ensure that patients are properly informed of their diagnosis and prognosis and the range of available options for medical care, including palliative care interventions aimed at reducing pain and avoiding the loss of personal dignity.

As a result of these findings, the Supreme Court declared the prohibition on physician-assisted suicide to be void insofar as it applies to a competent adult person who

(1) clearly consents to the termination of life; and

(2) has 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.

While provision (1) with respect to consent need not necessarily prohibit advance consent, and there is nothing inherent in the nature of advance consent to assisted suicide that would necessarily prevent a physician from ensuring informed consent, the Supreme Court’s second requirement may be more complicated to address in advance.

Provision for an advance consent or directive would effectively be asking people to predict irremediable suffering, and that they will find situation intolerable (with the definition of “intolerable” to be measured on a subjective basis). While a person faced with the thought of loss of memory may believe such a condition will be intolerable, that is not to say the situation, when it arises, may in fact be intolerable to the person in that moment.

It is also unclear how such an advance consent would function. Would a person direct that at the moment they lose capacity, their advance direction take effect and assisted suicide be provided? Or would the decision be implemented at some later time, after they lose decisional capacity, but before they lose the ability to live relatively independently? In essence, making an advance direction as to the moment such physician assistance would take effect requires a person to predict the moment at which their suffering becomes intolerable, or requires a substitute decision maker to make that decision on their behalf.

In short, legislators seeking to provide for advance directions for physician-assisted death face some challenges in seeking to preserve the autonomy and dignity of those diagnosed with dementia, while also addressing concerns over the vulnerable and the need to ensure informed consent. While we currently allow life and death medical decisions to be made by substitute decision makers in other healthcare contexts, and seek to ensure those decisions are made in line with the incapable person’s previous expressed wishes, it is unclear how willing to government may be to allow the same in this emerging area of physician-assisted death.

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1. 2015 SCC 5 at para. 99.