While medical aid in dying helps people in Canada die with dignity, to date, it excludes people living with dementia who cannot provide consent in later stages of the disease. New legislation proposed in Quebec would change that.
Providing medical aid in dying (MAID) — sometimes referred to as “death with dignity” — is fraught with both legal and ethical concerns. Yet, the demand for this right is growing around the world. In Canada, 2016 legislation granted Canadian residents who have severe and irreversible illness or disability the ability to apply for permission to die with medical assistance — as long as they are able to provide informed consent at least 90 days in advance of the procedure and then to consent again on the day of. For those with a reasonably foreseeable natural death, as is the case with some cancers, there is no delay between the request and the care and final consent is not mandatory in that case. However, the way this legislation is written, it generally excludes one large group of Canadians living with a fatal, debilitating disease: people with neurodegenerative conditions like Alzheimer’s dementia.
“Federal legislation does not yet allow MAID for non-apt persons, which is the case with all cognitive neurodegenerative diseases,” Georges L’Espérance, a Montreal-based neurosurgeon and president of Association Québécoise pour le Droit de Mourir dans la Dignité, a Quebec-based death with dignity advocacy organization, told Being Patient. This is because people who apply for MAID need to begin the process early enough to ensure that they would still be able to legally consent not only at the outset of the application process, but much later, too: on the very day of the procedure.
Expediting the timeline in order to ensure they can provide what is legally considered informed consent both at the start and the very end, L’Espérance said, robs them of some of the good years they may have left: “They lose one, two, three years of life with their loved ones,” he said. “That is what we want to change so those people will be able to stay with their families.”
According to L’Espérance, most patients who attended the association’s meetings on dying with dignity expressed interest in expanding the legislation. The province of Quebec has responded with the prosposal of Bill 38, which would allow people with severe and incurable diseases to consent to an assisted death before they become mentally or physically incapable, thereby extending the right to all people who have a diagnosis of Alzheimer’s or other dementias.
If this legislation passes, Quebec would join the Netherlands — the only other jurisdiction in the world that grants people with dementia this right.
Increasing access for medical aid in dying
Since January 5th, 2014, people living in Quebec have been able to apply for legal permission to be aided in death by a physician — known in Canada as Medical Aid in Dying. This was two years before the procedure was made more widely available in the rest of the country.
In 2020, almost 3,000 people applied for medical aid in dying in Quebec alone, with 2,120 receiving the procedure — 30 percent higher than in 2019, and more than 50 percent higher than 2018. In Canada on whole, about half a percent of all 2020 MAID patients attributed their decision to Alzheimer’s and still retained the cognitive faculties to give consent at the time of their passing.
According to a 2019 study published in JAMA Neurology, one in five people with elevated levels of beta-amyloid proteins in their brain expressed they would opt for physician-assisted suicide in the event that they become cognitively impaired. While the study only involved 47 participants, it does suggest that there is demand for expanding the law.
L’Espérance noted that an increase in MAID during the COVID pandemic are likely attributable to more people knowing about this right and other changes in legislation. If the legislation passes, more than 153,000 Quebecers living with dementia, he says, will have more options.
In December 2021, a special legislative committee recommended the expansion of end-of-life care in the province, and in May, Bill 38 was announced by Quebec health minister Christian Dubé. If this legislation passes, Quebec would join the Netherlands — the only other jurisdiction in the world that grants people with dementia this right.
Dying with dignity
Kelly Bone received an early-onset Alzheimer’s diagnosis at age 57 and afterward, decided to pursue the right to death with dignity.
“The reason it’s important to me is because I saw what my mother went through,” Bone told Being Patient in a 2020 interview. “She was diagnosed at 58 years old and ended up passing away from Alzheimer’s, and her death, I felt, was a very long and harrowing experience that I personally would not want to go through.”
Despite the growth of the “death with dignity” movement, Bone, who lives in Florida, learned during this process that the laws in the U.S. differ state to state, and the laws in most countries, including the U.S., exclude those with degenerative cognitive conditions from seeking such assistance.
“I’d like to be able to do euthanasia, where I go on my own terms and I do it when my quality of life is diminished,” she said.
In some countries like Switzerland, Bone learned, she was legally eligible for medical assistance in dying as a person with an Alzheimer’s diagnosis, but she would still need to consent to the procedure prior to its administration. That means that someone with an early-onset diagnosis would need to have the procedure administered before they experience significant decline.
Meanwhile, the Netherlands, which became the first country to allow euthanasia in 2002, also extended the right to people in advanced stages of dementia in 2020.
To Bone, dying with dignity means being able to make the final decision, having the time to discuss it with family members and doctors. L’Espérance and his colleagues in Death With Dignity organizations across Canada share this view.
As of now, Bill 38 was tabled late in the recent legislative session. According to the CBC, it could be adopted as soon as this summer if it receives unanimous support from all five parties. Meanwhile, Bill S-248 was read into the Canadian senate and proposes similar changes to federal laws.
Here in Australia, daughters, sons and younger kin can arrange Advance Care Planning for their elderly folk who are in the early stages of dementia. While these people are still capable of making decisions, their views on assisted dying can be gleaned and recorded in the Advance Care Directive that can be utilised if and when they get to a stage where their quality of life is being threatened by unbearable pain and comorbidities.