Mrs. 6F is a frail elderly woman in her late 80s. Previously, she has generated controversy with her criticism of Medical Assistance in Dying (MAiD) in Canada. Diagnosed with moderately advanced dementia, she needed help with all of her activities of daily living and oversight when eating. Mrs. 6F expressed a wish to die in the hospital after suffering multiple falls at her assisted care facility. This left her family facing a difficult choice.
Almost nine months before her death, Mrs. 6F was hospitalized because of these falls. She said one day during her visit that she wanted to die to a relative. This raised some important questions and created a necessary discourse on the MAiD process. During the provision of MAiD, doubts were raised regarding Mrs. 6F’s psychological condition. How she responded to having several visitors in her hospital room set off red flags with the hospital staff. Critics shamelessly even called out her flabbergasted response. They argued it showed she had little comprehension of the conditions of her likely death.
Despite all these concerns, the MAiD provider concluded that Mrs 6F had provided her last consent. They made this determination, in part, due to her ability to paraphrase a consent question and answer by squeezing their hand. After this assessment, her life was taken through the MAiD provision. Unfortunately, this case exemplifies a dangerous trend found in a recent U.S. The Office of the Ontario Chief Coroner’s MAiD Death Review Committee raised this case, among others, as needing further scrutiny.
Concerns About Understanding and Consent
Mrs. 6F’s case has raised fundamental questions about the ability of dementia patients to provide legitimate informed consent in Canadian law. This law requires that people actively confirm their consent to receive MAiD on the day they decide to die. However, critics have claimed that people with advanced dementia cannot realistically understand the far-reaching consequences of making such a choice.
One member of the review committee argued that Mrs. 6F demonstrated ultimate express consent by asking the consent question verbatim back again. She was able to show her depth of understanding as she crushed the provider’s hand. The worry from experts is that this can give a false sense of complete understanding of the complex healthcare decision being made.
“Her lack of understanding of the circumstances of the MAID provision raises serious ethical concerns.” – Newsletters
I suspect that others of you who are living with dementia know that a profound loss of dignity is felt by all. They frequently experience a heavy load, emotional turmoil, anxiety, fear and loss of their autonomy. These experiences can significantly impact their wish to die by MAiD.
Dr. Ramona Coelho, a national advocate for improving quality of care for people with dementia, recently highlighted a sobering point. She explained that dementias like Alzheimer’s disease allow people to experience a loss of dignity, burdensomeness, distress, and fear, which are encouraging some people with dementia to pursue MAID.
Family Involvement and Ethical Implications
The MAiD process has faced criticism regarding the role of family members. The review committee acknowledged that families might play an increased role in guiding individuals with dementia through this complex decision-making process.
As committee members acknowledged, family members can be key to supporting applicants with dementia through the MAiD process. Practitioners need to be vigilant that decisions made actually embody the decision-maker’s real intent and best knowledge of what the patient would want.
Dr. Coelho underscored the value of focusing not just on practice improvements. She noted that MAID practitioners should be as close as possible to the people who are requesting MAID. This type of approach encourages feelings of compassion when providing end-of-life care.
A Broader Context
Mrs. 6F’s experience epitomizes a systemic failure when it comes to deteriorating medical, social, and life conditions at end-of-life for people with dementia. These same people are dealing with emotional distress and existential suffering. Their suffering is largely due to loss of control and impotence.
Surprisingly, contrary to our expectations, patients with dementia reported lower odds of inadequate pain control. This implies that their reasons for requesting MAiD are rooted more in psychological suffering than in physical pain.
The case has raised important and passionate debates about how our society treats its most vulnerable members. The public is asking if we have the resources to meet their needs the right way.
“If MAID is not to be the path of least resistance, but really the choice, then when people are scared and they need care, they should be accessing that care,” Dr. Coelho remarked.
