Dementia RISING

Think About It While You Can

   The MAID acronym is a simple one which Canadians will understand, but it is a label for a very complex subject. A large number of ethical issues arise when one discusses medical assistance in dying and the legislation addressing them is constantly changing. A “Special Joint Committee on Medical Assistance in Dying” is looking into the matter (again) as I type. 
  The broad and basic argument over MAID puts in one corner those who think it should be a personal choice, while the combatants in the other bring up all kinds of philosophical and religious objections suggesting the state must be involved. The former say that those suffering horribly should be allowed the right to exit, while the latter feel that the granting of such a right will put us all on a slippery slope, along which legislative guardrails must be put. I am not an ethicist, but will admit that I am liberal about MAID and take a libertarian stance on this issue. If I was an ethicist, here is the narrower question I would address: “Should those fearing dementia be allowed to make an Advance Request for MAID before they become demented?” Given my stance, the answer is an easy one: “Sure.”  I think many, even those in the other corner who have seen someone with dementia, have said, “Please don’t let that happen to me.”
   One of the many problems related to "Advance Requests" is that having arrived at decision time the requestor may have changed his mind (or, lost it.) Fearing such an outcome, does one have to make such a decision early, while one can? Or do you figure that those who knew of your advance wish, will fulfil it for you even if you seem to be happy wandering about talking to people who aren’t there? Who pulls the plug if you can’t? Will the potential plug-pullers be in agreement about what is to be done?
   Before I provide you with sound advice, I will say that I am in favour of MAID and "Advance Requests." Having said clearly in advance that I want to go, you should not listen to me later. Just pull the plug. Christopher Hitchens expressed such a sentiment to those who suggested that even though he was an atheist, he would likely make a death-bed conversion. I was able to find a couple of his rebuttals:
And even if my voice goes before I do, I shall continue to write polemics against religious delusions, at least until it’s hello darkness my old friend. In which case, why not cancer of the brain? As a terrified, half-aware imbecile, I might even scream for a priest at the close of business, though I hereby state while I am still lucid that the entity thus humiliating itself would not in fact be “me.” (Bear this in mind, in case of any later rumors or fabrications.)
And:
"Down the road, if you ever hear me say there is a God, it won’t be me talking, but some hollowed out, terrified shell of who I used to be.”

Although I am not an ethicist, I do recognize that the answer is not that simple and that I cannot offer one to you. As a former librarian, however, I can help you look for it. Sources are provided below.

 A Conundrum

   This chart appeared in the Globe and Mail on Jan. 12, 2024."Decision Time"

Frances Woolley, Professor of Economics, Carleton University

"About one-third of women over age 90, and a quarter of men, are living with Alzheimer’s or another form of dementia. These diseases create immense suffering for people who gradually lose their minds, and for caregivers who gradually lose their loved ones. The diseases are expensive, too, costing billions in long-term care."

"There is no cure for dementia, but there is an escape route: medical assistance in dying. Yet just 1 per cent of people who chose MAID in 2022 had some form of dementia. Although many of us would, given the choice, prefer a painless and dignified early exit, we often do not have the choice: The dementia diagnosis comes after we have lost our ability to make informed decisions.

For this reason, every province needs to implement regular dementia screening immediately. We might not be able to cure Alzheimer’s any time soon. But with early diagnosis, we do have a way of ending suffering."

Pay Attention While You Can

Sources:

   "Medical Assistance in Dying," Alzheimer Society.
"Medical assistance in dying (MAID) is a complex and very personal issue. The information presented here is intended to assist and support people living with dementia – together with their families and caregivers – in making informed decisions about their care.

Is the Alzheimer Society supporting advance requests for MAID?

The Alzheimer Society of Canada supports the right of people living with dementia to make an advance request for a medically assisted death.

The Alzheimer Society recognizes that people living with dementia are individuals – first and foremost. They have the same rights as everyone else, including the right to participate in decisions about their life and care. We respect the rights of all people with dementia to advocate for their individual best interests, including advocating for access to MAID through advance requests."

   “Most Canadians Want the Right to Plan Ahead for an Assisted Death if they get Dementia. So Why is it so Complicated?”, Erin Anderssen, Globe & Mail, Feb. 18, 2023. This is a very useful article, which may not be behind a paywall.

   "In a late January survey, conducted for The Globe and Mail by Nanos Research, 80 per cent of respondents agreed, or somewhat agreed, that Canadians should be able to make advance requests outlining their conditions for assisted death, for when they can no longer legally give consent....

   Canada’s current legislation requires people to clearly consent to medical assistance in dying, known as MAID, on the day it is provided – with a limited exception. A patient whose natural death is deemed to be “reasonably foreseeable,” and who is suffering intolerably and has been approved for MAID, may waive final consent if they are at risk of losing capacity before their scheduled date. That could be up to six months away, in certain cases, if the MAID provider agrees....

   Canada’s MAID laws give priority to the patient’s voice. Patients say when their suffering has grown intolerable, and when their treatment is at an end. But at the later stage of dementia, a patient’s voice is silent. If advance requests are allowed, a doctor or nurse practitioner, ideally working with a trusted caregiver, would have to assess suffering and decide death’s timing by interpreting instructions from the past.

   The Dutch experience highlights the difficulty of following advance directives that are vaguely worded, or may not fully reflect the future their authors imagined. And it also makes clear the importance of informed third parties who can advocate for patients. A person might say they want euthanasia when they can no longer recognize their family. But which family members, and what level of recognition? (What if, for instance, they are still delighted to see the friendly strangers who keep visiting?)...

   "Why shouldn’t the values of a person’s capable self trump the version that can’t communicate or care for themselves? Ms. Demontigny said she suffers now, not knowing how long her healthy body might last while her mind crumbles and what that will mean for her children.

  An advance directive, she said, would allow her to live today, free from worry about what happens at the end. If that is not allowed, she will have to ask for MAID before she is truly ready, just to guarantee her wishes are respected. “I will lose time,” she said, “but I don’t want to take the risk.”

Geriatric Gems (a useful 2pp. pdf.)
 "Medical Assistance in Dying and Older Adults," Casey, et al

Canadian Family Physician, Vol.68, July, 2022.

Clinical question

"How do changes in legislation pertaining to medical assistance in dying (MAID) affect my patients with frailty or dementia? Are advance requests allowed?

Bottom line:
Given their long-term, trusting relationships with patients and their families, 

family physicians can play a critical role in discussions about MAID.The eligibility for MAID has expanded, albeit with qualifiers to protect vulnerable individuals. This article highlights these changes, which are reviewed in greater depth in an article published in the Canadian Geriatrics Society Journal of CME in 2022."

   “Dementia and Assistance in Dying: A Catch 22,” George Szaz, British Columbia Medical Journal, Vol.65, No.7, Sept. 2023. A very sad case.

"Persons suffering from dementia are not eligible for medical assistance in dying, and this is inhumane."

   "For People with Dementia, Changes in MAiD Law Offer New Hope: For People with Dementia, Changes in MAiD Law Offer New Hope, Jocelyn Downie, Policy Options, April 21, 2021.

"People with dementia have been caught in a cruel trap under Canada’s medical assistance in dying law (MAiD) – until now. As their suffering advanced, their decision-making capacity receded, but the capacity to make their own health-care decisions was required at the moment of MAiD itself. Access to MAiD balanced on the knife-edge of reaching an intolerable state of suffering prior to completely losing capacity. People were forced to choose to end their lives earlier than they wanted. With the passage of legislation amending Canada’s MAiD law (Bill C-7), this dilemma will be over for many."

A Headline Today - Jan. 22, 2024:

Health System Urged to Brace For Major Shift in Dementia Demographics," Kelly Grant, Globe & Mail.

"In a study released Monday, the Alzheimer Society of Canada predicts there will be more than 1.7 million people in Canada living with dementia in 2050, nearly three times the estimated 650,000 today. One in four will be Asian, a broad category that includes people with roots in China, Vietnam, Korea, India, Pakistan, Sri Lanka and other countries."