Is MAiD system safe for Canadians with dementia?

Opinion

Children’s author Robert Munsch was recently in the media discussing his plans for a medically assisted death based on his dementia diagnosis. He fears becoming, in his words, a “turnip in bed.” It’s an unkind and discriminatory description of those with cognitive decline, but many Canadians find his fears relatable.

At this time, Munsch still enjoys life, his daughter reassured the public, and his approval for medical assistance in dying (MAiD) dates back to 2021.

I know what it’s like to accompany a family member with dementia and the struggles it can bring. My father had advanced dementia and lived with my family. Several years ago, when he developed an infection, an emergency physician suggested his sudden weakness and inability to stand were likely just part of normal dementia progression.

As a physician with experience in dementia home care, I recognized delirium, which in his case was due to pneumonia. Once treated, he lived many more months, and I treasured that time.

Experiences like this have shaped my perspective. For people with dementia, medical assistance in dying — the legal term for assisted suicide or euthanasia — is complex. How can capacity be assessed when memory and judgment are impaired? How can clinicians’ biases against those with cognitive decline be addressed for patients already facing barriers to care and fears of future decline?

The Ontario Chief Coroner released this week a new MAiD Death Review Committee (MDRC) Report: “Navigating MAiD with Persons with Dementia.” While dementia cases make up a small proportion of MAiD deaths, they are disproportionately linked to family concerns and often require feedback from the coroner’s office to MAiD clinicians.

As a committee member, I offer my view of this report.

The suffering that drives patients with dementia to seek MAiD often comes from a perceived loss of dignity, feeling like a burden, emotional distress and the fear of decline. Although palliative and supportive therapies have proven benefits for these concerns, the report documents that only 13.6 per cent of dementia patients received palliative care before MAiD.

In the report, Mr. 6D, a man with Alzheimer’s and delirium, received MAiD during an acute illness while facing long-term care placement after losing his caregiver. The report also documents situations where family members initiated MAiD requests for a patient with advanced dementia. With high rates of elder and financial abuse in Canada, and the dependence of dementia patients on caregivers, these cases illustrate the potential risks of coercion or undue influence to die by MAiD.

These risks are compounded when eligibility assessments themselves appear superficial, as in the case of Mrs. 6F with advanced dementia. The MAiD provider conducted an eligibility assessment over a single interaction with a family member present. The MAiD provider’s documentation reflected a limited evaluation of cognitive impairments. With advanced dementia, informed consent is often not possible. MAiD is a serious life-ending procedure, and the literature is clear: higher-stakes interventions demand a rigorous capacity assessment.

Fear of future decline also plays a powerful role in MAiD, as in the case of Mr. 6E. His caregiver questioned whether difficulties navigating the system led him to choose an earlier MAiD death. Legislation requires that a person be experiencing intolerable suffering at the time of assessment. MAiD is not permitted for hypothetical future suffering.

The approval of Munsch, despite his daughter’s claims that he is still enjoying life, along with Mr. 6E and others noted in MDRC reports, once again raises legal and ethical questions about whether legislative standards are consistently met by MAiD clinicians.

Similarly, for Mrs. 6A, a request for MAiD came at a time of new health decline and low mood — raising questions about whether reversible conditions were fully explored before her life was ended. She was a woman in her late 80s with moderate Alzheimer’s and diminished insight. At a visit for her recent decline, she requested MAiD, citing fear of what lay ahead. A concerned family member questioned whether depression and other reversible conditions were properly addressed before her life was ended.

New health decline should trigger investigations, yet ageism and ableism often prevent this. A proper diagnosis gives patients the information they need to make decisions about their health, and clinicians the necessary information to treat them.

Lastly, in cases of mild dementia, such as Mr. 6B and Mrs. 6C, clinicians are inconsistently classifying the condition as either “track one” (MAiD pathway for those near death) or “track two” (those with disabilities not near death). Many with dementia are assigned to track one, enabling same-day MAiD, despite potentially having years to live. Generally, patients with dementia can be especially vulnerable to negative clinician bias, where diminished cognition is seen as a reason they’d be “better off dead.” This bias could lead to superficial assessments, rather than taking time to explore ways to ameliorate suffering.

In Canada, patients often lack guidance on dementia care, prognosis and supports. Yet MAiD can proceed without fully informed decision-making.

These troubling patterns stand in stark contrast to what I witnessed in my own family. Despite setbacks and uncertainty, my dad lived joyfully for years, surrounded by love, supported by many excellent care providers, and ultimately died naturally and peacefully with his children and grandchildren — his “lovely relatives” — at his side.

Munsch’s stories are beloved precisely because they celebrate people for who they are, not for what they can do. Just being together and reading with our children reminds us of the dignity and joy found in simply being together. If Canada cannot protect people with dementia — those most in need of compassion — its MAiD system is not safe.

» Dr. Ramona Coelho is a family physician whose practice largely serves marginalized persons in London, Ont. She is a senior fellow at the Macdonald-Laurier Institute and co-editor of the new book “Unravelling MAiD in Canada” from McGill University Press.