Ageism, ableism and the stigmatization of mental health are at the root of the desire to allow medical assistance in dying (MAID) by advance medical directives, as proposed by Quebec in Bill 38. This crossroads of discrimination leads to what I call dementophobia.
Posted at 1:00 p.m.
The latter is accepted and even encouraged. This term is not yet officially part of the medical literature, but I suggest it as this fear of people with dementia. Indeed, dementophobia is to dementia what xenophobia is to immigration.
Although I understand, as a doctor, the importance to be given to specific phobias (eg fear of needles), this is not the case with dementophobia.
Admittedly, people with dementia are afraid of becoming like those whose condition repels them, because they are both old (ageism), live with physical and mental disabilities (capabilism) and suffer from psychiatric problems (stigmatization of mental health).
Dementophobia is a form of fear that can lead to repulsion.
From the outset, the lack of recognition of human dignity for people with dementia is central to the dementophobic perspective, defended by the Special Commission on the evolution of the Law concerning end-of-life care of 2021 and the College of Physicians of Quebec.
Failing to recognize the unique value of people with major neurocognitive disorder is seriously ethically inaccurate. Horrifyingly, these people are assumed to be worthless if they decide so on their own, subjectively.
Subjective dignity takes precedence. However, the latter cannot exist without dignity defined as intrinsic.
Also, intrinsic dignity ethically prohibits the euthanasia of the person suffering from dementia and incapacitated, because despite the handicaps and mental or cognitive illnesses, this individual still has an inextricable absolute value.
Also, by defending the supposed “right to die with dignity” in dementia, we encourage the unjustified discrimination of people living with disabilities. Indeed, it is thus suggested that their life is not worth living, because they would be too dependent and, therefore, without dignity.
In addition, dementophobia can be internalized, that is to say that a person comes to believe the contemptuous remarks made about him. A person with dementia will then believe that he is no longer worth anything, since his entourage and the too often dementophobic society often repeat it to him openly or insidiously.
The internalization of dementophobia then has a significant impact. Dementophobia needs more study, but it is otherwise evident that there is ageism, ableism, and mental health stigma, both ambient and internalized.
Also, we must consider the very small number of specialized physicians to assess the suffering of people with dementia in Quebec. The geriatricians of La Belle Province will not be enough to assess the suffering of people with dementia, especially considering the lack of conclusive data.
Those who falsely claim the existence of scales validated by science for evaluating suffering in dementia are dangerously close to quackery. Assessing them with certainty is more of an art than a science that is never certain and always by trial and error.
It is important to provide real care to people with dementia out of respect for their dignity and they should not be encouraged to die by MAID in the context of dementophobia.
I would have liked to express these reservations before the parliamentary committee studying Bill 38, but I note the exclusion of all voices opposed to MAID by advance requests during recent public hearings.