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André Picard

A dignified death for dementia patients: Who makes that call? Add to ...

The advocacy organization Dying With Dignity believes that new laws currently being drafted by federal and provincial legislators and guidelines being formulated by the bodies overseeing medical professionals should allow for people diagnosed with dementia to make a request for assisted death ahead of time.

A poll commissioned by the group suggests that 80 per cent of Canadians agree with them on the concept of advanced consent.

The idea is compelling, at least superficially. After all, no one relishes the thought of gradually losing their memory, their intellect, their ability to function independently. Shouldn’t we be able to end it all?

Practically though, letting someone choose to die at some undetermined future date is perilous, both legally and ethically.

Patients now have the right to die – that is the law of the land. But the Supreme Court of Canada, in its landmark February 2015 ruling, established some important parameters.

It said a patient requesting assisted death must experience “grievous and irremediable” suffering and clearly consent to the termination of life.

Alzheimer’s and other forms of dementia are, without a doubt, grievous and irremediable at some point. It is consent – and the capacity to consent – that is the problematic issue.

Advance care directives (sometimes referred to as living wills), which allow people to set out the kind of care they want should they be unable to speak for themselves are essential, and too few Canadians have them.

While advance directives allow individuals to set limits on their care, such as do-not-resuscitate (DNR) orders, and give a loved one power-of-attorney to make decisions on their behalf, it is not clear these directives extend from passive withholding of procedures (from CPR through to feeding) to the act of hastening death.

Both the federal and provincial-territorial committees that studied assisted death reflected on this question.

The Provincial-Territorial Advisory Group on Physician-Assisted Dying said bluntly that “substitute decision makers should not be given the legal authority to consent to/authorize physician-assisted dying on behalf of an incompetent patient.” They also said people with dementia should not be specifically excluded from requesting assisted death but that existing processes for determining competency and consent should apply, which would essentially rule them out.

The External Panel on Options for a Legislative Response to Carter v. Canada, whose mandate did not allow it to make recommendations, noted that the Supreme Court was silent on the issue of advance directives, but that Quebec’s right-to-die legislation explicitly prohibits requesting assisted death via advance directive.

In fact, only three countries (Belgium, Luxembourg and the Netherlands) allow dementia patients to choose assisted death and then only with conditions – such as having a diagnosis, an advance directive no more than five years old, and that a patient’s condition is so advanced that they are unconscious.

The federal panel also heard powerful submissions stating that refusing assisted death to people with dementia is cruel and discriminatory.

Margot Bentley’s tragic saga is a case in point: The B.C. woman left specific advanced directives about withdrawing care (assisted death wasn’t an option at the time) once she lost her faculties, but she continues to be fed against her (and her family’s) wishes because the facility where she is being cared for argues that her reflexive taking of food amounts to consent.

That is a reminder of another difficulty with advance consent: Does it strip people of the ability to change their minds? In assisted-death legislation around the world, there is a process (and often a mandated “period of reflection”) that allows patients several opportunities to withdraw their consent.

A patient with advanced dementia would not have the capacity to do so.

Of all the thorny issues related to the right-to-die, respecting the rights of dementia patients is perhaps the thorniest, though patients with psychiatric illnesses and children raise similarly difficult questions.

We want to avoid cases like that of Gillian Bennett, who opted to take her own life shortly after her dementia diagnosis for fear of losing her ability to choose a dignified death later.

But we want to avoid the assumption, too, that a life with dementia is not a life worth living.

Legislators and regulators have the unenviable task of finding the juste milieu between granting dementia sufferers the right to a full life and a dignified death.

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Follow on Twitter: @picardonhealth

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