Thank you to the IT support people, who have made this less stressful for me.
Thank you to the committee for allowing me the opportunity to address my concerns regarding advance directives for MAID in people living with dementia.
I am a geriatric medicine physician who has been looking after frail elderly people since 1989, over 30 years now. I do home visits three half-days a week for housebound seniors and I see elderly patients in hospital and in clinic. I am also the daughter caregiver for my 97-year-old father. I also helped him care for my mother, who passed away with severe dementia after living gracefully and with dignity until the age of 96. I am also involved in the care of a couple of my father's relatives who are also in their late eighties and nineties. I am professionally and personally committed to caring for those living with dementia at all stages, from early to late.
I am a firm believer in patient autonomy. If a patient is able to comprehend information on a treatment versus other options, and is able to come to a decision and communicate that decision, their wishes should be honoured, no matter how frail they may be. If they are capable of decision-making, I will support their decision. They should also, however, be allowed to withdraw consent at any time, especially when the effects may be life-altering. I teach capacity assessments to medical students, residents and practising physicians so that they will be able to identify whether a patient is capable of medical decision-making.
The issues with advance directives for MAID are several-fold. First, we are not able to predict with accuracy what our own quality of life will be in the future, let alone if we are also living with a chronic medical illness. What right does the 60- or 70-year-old you have to judge the quality of life of the 80- or 90-year-old you? Patients with chronic illnesses can often adapt to their altered circumstances and develop a new equilibrium and sense of self, and feel that their quality of life is actually quite good. The medical literature has demonstrated this to be true. I happen to have seen it in my years of practice as well.
Second, with end-stage dementia, there would be absolutely no chance to withdraw consent, which is also essential to informed consent. Someone else, a health care worker who may not know the patient, or a caregiver, would have to decide when it's time for MAID to proceed. Patients living with dementia face prejudice due to not only ableism but also ageism. It has also been shown that caregivers may not be good judges of the quality of life of their loved ones with dementia. Caregiver burden often influences the assessment by caregivers in terms of their patients' quality of life.
Finally, there is the risk that allowing advance directives for patients with dementia could lead to abuse. Patients already can face undue influence to do the right thing and not be a burden to society or to their loved ones. I have had multiple patients who have been heartbroken at having been coerced into selling their home and moving into a facility because of family pressures to not be a burden. I cannot currently protect vulnerable elderly from financial abuse with the current safeguards. I do not believe safeguards could be crafted to adequately protect them from undue influence to accept or request MAID.
In summary, I am opposed to advance directives for MAID, as people cannot predict with accuracy how they would feel in a future situation they have not yet experienced; there is no ability to withdraw consent; even caregivers of those with dementia, who know them well, have difficulty assessing their quality of life; and finally, these directives may open up another avenue of potential abuse of vulnerable elderly.
Thank you very much for listening.