A man with mild dementia received medical assistance in dying (MAID) because he could no longer participate in hobbies and feared future suffering, a new report from Ontario’s chief coroner’s office says.
The man, called Mr. B, is one of six people profiled in the latest report by Ontario’s MAID Death Review Committee, a 16-person interdisciplinary committee that reviews controversial MAID cases.
Its latest report, which is not released publicly, raises concerns about how individuals with dementia are deemed eligible for MAID.
Mr. B was diagnosed with an unspecified neurocognitive disorder a year before his MAID death and was later diagnosed with dementia. Three months before he died, he scored 26 out of 30 — the low end of normal — on a test commonly used to identify memory problems.
But his diagnosis was causing him profound suffering, the report says. Mr. B, “a highly intelligent person with a professional background,” could no longer drive and struggled to read or participate in “intellectually stimulating activities.”
“His suffering was primarily psychological in nature,” the report says.
Mr. B was found eligible for Track 1 MAID, which is MAID for people who are in a state of “irreversible decline” and whose deaths are “reasonably foreseeable.” Several members agreed with Mr. B being eligible for MAID because dementia is a terminal disease.
However, other members had concerns about how dementia patients meet the requirement of “irreversible” decline. Many people with dementia remain active, even if they can no longer drive or participate in hobbies, these members said.
Irreversible decline “ensures that MAID is reserved for persons whose loss of function is profound and enduring, and significantly compromises their quality of life,” these members said.
“Interpreting the loss of some higher-order functions as evidence of an advanced decline risks undermining the intent of the legislation.”
But others disagreed. Loss of ability in dementia’s early stages can cause a “profound and deeply personal impact on [patients’] sense of identity” that can “fundamentally alter their experience of living,” they said.
Long-term care
In 2023, 241 Canadians who died by MAID had dementia. In 106 of these cases, dementia was their only medical condition.
In Ontario, dementia was reported as the primary cause of death in 103 MAID cases between 2023 and 2024; in all but one case, these individuals were approved for Track 1 MAID.
These individuals’ causes of decline and suffering differed from other Track 1 MAID patients, the coroner’s report notes.
MAID dementia patients were more likely than other Track 1 patients to report suffering from loneliness, fear or existential suffering, loss of dignity or feeling like a burden. For these patients, 68 per cent reported feeling like a burden, compared to 46 per cent of all Track 1 patients.
The committee’s report raises concerns about the factors motivating individuals with dementia to request MAID.
In one case, a man in his 80s who had had Alzheimer’s for a decade requested MAID a week before a planned transfer to a long-term care facility.
The man, known as Mr. D, had recently been hospitalized and needed a walker and increased supervision while in rehabilitation. He could not return home because of his caregiver’s own health challenges.
Mr. D’s two MAID assessments were completed on the same day. The assessors approved him for MAID, although the report notes he may have been experiencing delirium.
“Some [committee] members noted that the timing of [Mr. D’s MAID] request appeared to be aligned with Mr. D’s main caregiver being unable to continue providing care for him at home, potentially shaping the context of his decision,” the report says. There was no evidence the MAID assessors considered this when approving him for MAID, the report says.
In another case, Mrs. A, a woman in her 80s whose cognitive capacity had declined for years, was approved for MAID despite concerns that she was struggling to adjust to life at a retirement home. Mrs. A had had suicidal ideation a few months before requesting MAID.
Another woman, Mrs. F, requested MAID four months after moving into long-term care. She had been hospitalized after several falls, and discharged to a long-term care facility due to her high care needs. There, she became bedridden and experienced existential distress, prompting her request for MAID.
On the scheduled day of her MAID death, Mrs. F became “overwhelmed” with all the visitors. The visitors were sent away. The MAID provider determined Mrs. F gave final consent to MAID because she could repeat the provider’s question and then squeezed the provider’s hand.
‘Irreversible nature’
Some committee members also expressed concerns about the difficulty caregivers have getting information about MAID.
In one case, a man called Mr. E applied for MAID because of the fear he felt after being diagnosed with Alzheimer’s. His cognitive scores improved with support, but his fear continued and he stopped attending the memory clinic.
His caregiver said it was hard finding information about end-of-life care for people with dementia. The caregiver said he may have accessed MAID too soon, and could have still experienced “meaningful quality of life,” the report says.
Throughout the report, committee members disagreed about whether there needs to be enhanced criteria to determine if patients who request MAID understand their decision.
“There is no need to impose a higher standard for capacity evaluations in MAID cases,” some committee members said. Patients who request MAID must be found capable of making medical decisions, just like all other patients, they said.
But other members “questioned whether the threshold for determining capacity in the context of MAID should be higher than in other clinical decisions, given the irreversible nature of the outcome.”
I have suffered from mental illness since age 31/2. Compliments of RC church and family. I will be 67 in a few weeks. I have no family support; I opened the closet doors and was disowned by the family. Due to the extreme of the abuse I will never recover. Drugs don’t work.I can’t afford therapy. Don’t qualify for MAID.
It is the height of ego for someone to decide that even if a person who previously enjoyed certain activities can no longer do them, they will still have “sufficient quality of life”. Choosing MAiD should be something any individual can do freely, for whatever reason, without constraint. There are many worse things than death.
Denying MAiD in these situations has nothing to do with the suffering victim but everything to do with very personal ideology of those who presume to sit in judgement. And there’s nothing even decent about that.
Because MAID procedure requires a person to be cogent enough to give ‘informed consent’ at the time of death, dementia patients are forced to exit life early, while they are still confident they’ll be cogent enough to agree to the procedure. If advance requests were allowed, waiving the need for last minute consent, dementia patients could relax and in fact live longer (and happier). My father died of complications from Alzheimer’s at age 91 and my husband died of early onset Alzheimer’s complications at age 69 – it is not a pretty death and it is absolutely pointless to prolong life the way we do. Just picture yourself sitting in a dirty adult diaper, waiting for a caregiver to notice you smell to high heaven. Now picture yourself as a patient in a care facility – the person changing your diaper will be a complete stranger. Both of the lovely gentlemen in my life would have chosen MAID if advance requests had been available.
I am fine with having some standards for MAID due to dementia. But, I cannot agree with someone saying that I might have some chance at quality of life or expressing concern for me based on their agenda, religious beliefs or ideology.
Quebec has it right, allowing pre-registration for MAID for patients diagnosed with Alzheimers.
Some good standards might include inability to recognize one’s family, or loss of key cognitive abilities.
Personally, I do not want to become a burden on my family and the healthcare system, or become a risk of violence to healthcare workers or simply a being without choice or future.
To the Ontario’s MAID Death Review Committee, Please allow me my choice! My body, my life.