Why MAID is failing people living with dementia
In the spring 2019 issue of Dementia Connections magazine, the article “Death and Decisions” by Julia Williams explored the issue of access to Medical Assistance in Dying (MAID) legislation for people living with dementia. It included interviews with Dr. Samir Sinha, director of geriatrics at Sinai Health System and the University Health Network in Toronto; Dana Livingstone, whose mother passed away from complications related to dementia; and Ron Posno, who is living with dementia. Currently, people with dementia are excluded from accessing MAID. Posno believes that every Canadian has the right to a medically assisted death. Here, Posno, who is 80, dives deeper into his perspective as to why MAID, in its current form, is failing people living with dementia.
From my perspective, the federal government was forced into the creation of the Medical Assistance in Dying law (MAID) by the Supreme Court of Canada with its Carter Decision in February 2015. Basing its findings upon the Canadian Charter of Rights and Freedoms, the Court essentially said every Canadian has the right to a medically assisted death, and then the Court directed the Government of Canada to legislate such law within one year.
The government asked the Supreme Court for more time, and a large number of experts from across the country were asked to bring forward recommendations ASAP. The Supreme Court gave the government four more months, and the government assigned the experts’ recommendations to a panel of MPs and senators for review. This second review panel largely supported the experts’ recommendations and — this is critically important — both panels supported the use of advance requests (ARs). Neither mentioned anything to do with the concept of “foreseeable future,” nor the need for “late-stage protection,” nor any requirement “to protect the vulnerable.”
On June 17, 2016, Bill C-14 (MAID) was passed by the House of Commons, possibly the most compelling health legislation since the passage of Medicare in 1966. And yet, MAID failed because it did not follow the directions of the Supreme Court and it failed to permit access for people with dementia.
In its original direction to the Government of Canada, with respect to the creation of MAID, the Supreme Court did not say people with dementia are vulnerable and need protection. It said, “Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.” (Carter Decision, February 2015)
In spite of such clear and definitive direction, people with dementia are still excluded from MAID.
Five months after MAID was passed, the federal government hired the Council of Canadian Academies (CCA) — a not-for-profit organization that asks the best experts in their respective fields to assess the evidence on complex scientific topics of public interest to inform decision-making in Canada — to study the problems of MAID and report back by December 2018.
Dr. Samir Sinha [who was one of the sources in Dementia Connections’ story, “Death and Decisions”] is known as a passionate spokesperson for senior health. He is also a member of CCA. Sinha sees MAID as “a complex ethical issue.” As an example, he offers from the CCA report: “Removing a requirement for express consent [i.e. removing late-stage protection] immediately prior to the MAID procedure raises the possibility that a person might receive MAID against their wishes.”
This statement is an example of pure speculation. I am a person with dementia. I was assessed almost three years ago, and, if my dementia progression devolves as expected, I will have maybe 10 or more years before I am incapable of rational thought. If an AR process was in place, I could apply early in my progression, and, if it came to be that I wanted to change my rational mind, I would have time to withdraw the application. That’s not speculation; that’s the reality of people living with dementia. We don’t need “late-stage protection.” We do need an improved MAID.
Here are the four real failings of MAID:
Foreseeable future. MAID is limited to deaths in the “foreseeable future,” but does not clarify what or when that is.
Late-stage protection or express consent. Who are we protecting, physician or patient? How can an “ask” be accepted from a patient in the throes of pain, or in the late stages of dementia?
No provision for advance request/directives. Why? Who are we protecting? Why must an application be withheld to just before a cogent death, contrary to existing, mandatory requirements for do-not-resuscitate orders?
Protection for the vulnerable. Late-stage protection creates vulnerability; people with dementia are most vulnerable during late-stage progression of dementia, but most are capable of cogent fluency for 10 years or more after initial diagnosis.
Real, rational solutions are available. We just need calm, rational decision-making. Dump the first two failings. They are so obviously wrong, they don’t require detailed explanation for removal. Provision of advance requests need not be difficult. We already have — right across this country — a citizen’s right to a “do-not-resuscitate” application procedure. It does not discriminate, other than by consideration of mental competency. People with dementia can apply — while they are still cogent. If they are not able, then a properly designated attorney or a substitute decision-maker may apply on behalf of the person in need. ARs could be provided. The legal precedent is there, and the procedure is well-established; just follow the steps.
So, let’s go ahead. Dying With Dignity Canada (DWDC) has a petition going around in which it has proposed legitimate, well-considered and relatively easy changes to MAID. Of the more than half million people with dementia in Canada today, possibly 400,000 could make an informed and cogent choice. They don’t have to choose MAID, but that choice should be available.
Waiting is destructive; proceeding is constructive. We should have access to a real MAID law, and a more informed, dementia-friendly Canada.
Let’s do it now. [ ]
Learn more at dyingwithdignity.ca