Jocelyn Downie, James S. Palmer Chair in Public Policy and Law
Twitter: https://twitter.com/jgdownie
SSRN: https://papers.ssrn.com/sol3/cf_dev/AbsByAuth.cfm?per_id=715388

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You might think that people with dementia cannot get medical assistance in dying (MAiD). But you’d be wrong. In fact, some people with dementia can get MAiD. Indeed, some people with dementia have received MAiD. Here’s how.

In order to be eligible for MAiD, a person must:

• be capable of making decisions with respect to their health at the time of the request for MAiD as well as immediately prior to the provision of MAiD;
• have made a voluntary request for MAiD that, in particular, was not made as a result of external pressure;
• have given informed consent to receive medical assistance in dying after having been informed of the means that are available to relieve their suffering, including palliative care and have given express consent to MAiD immediately prior to the provision of MAiD;
• have a grievous and irremediable medical condition which is defined as:
  • having a serious and incurable illness, disease or disability;
  • being in an advanced state of irreversible decline in capability;
  • that illness, disease or disability or that state of decline causing them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that you consider acceptable; and
  • their natural death having become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining.

If a person is in the very advanced stages of dementia, they will not be eligible for MAiD because they will not be capable of making decisions with respect to their health immediately prior to the provision of MAiD. Advance requests for MAiD are not allowed in Canada.

But in the earlier stages, a person with dementia may be eligible for MAiD.

Dementia itself is not an illness, disease, or disability. Rather, it is a group of symptoms. Dementia can be caused by a range of things, including diseases such as Parkinson’s, Huntington’s, and Alzheimer’s disease. It can also be caused by traumatic brain injury, reduced blood flow to the brain, and drug or alcohol abuse. Since Alzheimer’s disease causes most cases of dementia, I will use it as my illustrative example.

Alzheimer’s disease is clearly a serious and incurable disease.

A diagnosis of Alzheimer’s disease immediately makes one’s natural death “reasonably foreseeable”. “Reasonably foreseeable” can, and has, been interpreted as meaning: the timing of anticipated death is not too remote or the cause of death is predictable. With Alzheimer’s disease, upon diagnosis one’s natural death is “not too remote” (because the median lifespan is seven years after diagnosis) and one’s cause of death is predictable.

People with Alzheimer’s disease can experience an advanced state of irreversible decline in capability before they lose decision-making capacity. An immigrant might lose the ability to speak the language of his adopted home after having spoken it for decades. A professional pianist might lose the ability to play the piano. An English Professor might lose the ability to read. A hiker might lose the ability to walk more than a block at a time. They might all still be fully capable of making decisions about their health. Alzheimer’s can significantly impair our ability to perform everyday tasks that involve physical coordination, memory, or planning, before we have lost the capacity to make decisions with respect to our health. And, as Stefanie Green, President of the Canadian Association of MAiD Assessors and Providers noted, “’What would be more advanced… than being close to losing capacity to make decisions for oneself?’”

People with Alzheimer’s disease can also experience enduring, intolerable and irremediable physical or psychological suffering before they lose decision-making capacity. Some people find the following to be excruciating: the inability to independently perform any of the activities of daily living; the inability to recognize one’s children; the inability to pursue any of the activities that gave one’s life meaning; and the total loss of independence.

Thus, someone with Alzheimer’s disease could be eligible for MAiD.

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For an example of just such a person, consider the following actual case (the quotes below are from a letter to the clinicians involved from the College of Physicians and Surgeons of BC who were responding to concerns expressed by the Coroner and Chief Medical Officer of BC).

Ms. Wilson was a 74-year-old woman formally diagnosed with Alzheimer’s disease in 2015. She began seriously pursuing MAiD in January 2017.

Voluntary and informed consent:

She was fully informed about the alternatives to MAiD and ways to maximize her quality of life and she had good access to medical treatment and supports.

“Drs. Pereira and Dr. [ ] had long-standing involvement in the provision of medical care to Ms. Wilson, and were familiar with her condition and decline over the years. Both physicians were similarly well-aware of her suffering, and made significant attempts to ameliorate her condition with medical therapy, multi-disciplinary involvement, and community supports.”

“Ms. Wilson received very good and complete medical care, and she saw numerous specialists to treat her condition over the last years of her life, including therapists, paramedical professionals, and a clinical pharmacist, as well as support from the geriatric clinic. Her medical treatment was maximized, and she had good support from community organizations and her family.”

Capable:

Ms. Wilson was found to be capable of making the MAiD decision by three physicians (her family physician of more than ten years, her neurologist of four years, and her MAiD provider).

“she demonstrated continued capacity to direct her medical care…”

“Dr. Pereira was the long-standing family-physician for Ms. Wilson, and was very familiar with her current cognitive status. We further note that Dr. [ ], in [ ] capacity as a neurologist providing longitudinal care for Ms. Wilson conducted a formal capacity assessment, and provided [ ] documented opinion that Ms. Wilson possessed the appropriate capacity to consent for MAiD.”

Serious and incurable illness, disease, or disability:

Ms. Wilson had been diagnosed with Alzheimer’s disease.

Advanced state of irreversible decline in capability:

Ms. Wilson had lost a wide range of prior capabilities.

“Ms Wilson was no longer able to drive, could not operate the television remote control, could not work the telephone, and was unable to make meals.”

“She was not able to perform most activities of daily living without assistance from her husband.”

Enduring, intolerable, and irremediable suffering:

Despite high levels of family, community, and professional supports, Ms. Wilson was experiencing suffering that she found to be intolerable and which could not be relieved.

“On numerous occasions she related that her suffering was intolerable to her, and that was why she requested MAiD. As her cognition deteriorated and her dependence on her husband increased, her reported suffering worsened. … She became increasingly distressed at her level of deterioration, despite the support and care of her doting husband. Dr. Pereira noted that in his opinion, Ms. Wilson’s condition was grievous to her in a very profound way.”

“Ms. Wilson articulated her increased suffering, particularly her psychological suffering, as a result of her increasing loss of independence. She was very clear that she did not want to leave her home, and did not want to live in a care facility. … Ms. Wilson communicated that she was suffering in a way that was increasingly intolerable, and she did not find any alternatives to be acceptable.”

MAiD was provided to Ms. Wilson on October 29, 2017.

On December 6, 2018, following a detailed review of the case, the College of Physicians and Surgeons of British Columbia concluded “the three physicians involved in this case practiced consistent with the current legislation…”

In May 2019, Canadian Association of MAiD Assessors and Providers released a clinical guidance document “Medical Assistance in Dying (MAiD) in Dementia,” to provide guidance to physicians and nurse practitioners when presented with requests for MAiD from persons with dementia, https://camapcanada.ca/wp-content/uploads/2019/05/CPG-dementia.pdf

And so, now, it is apparent that some people with dementia can get MAiD in Canada.