Quebec's proposed bill allowing advanced consent for assisted dying applauded by advocates

At 43, Sandra Demontigny lives with early onset Alzheimer's disease, having been diagnosed with it in 2018. It's the same disease that took her father's life.

"It's hard because you know you'll just lose and lose and lose all the things you're able to do," said Demontigny.

Shelives in Lvis, Que., not far from the province's capital where legislators are moving forward with a bill that will allow people like her to consent to medically assisted dying before the disease incapacitates theirability to make such important decisions about end-of-life care.

Demontigny said she never wants to reach the point her father did, dying at just 53, and she hopes lawmakers will pass the bill so she can give her consent before the disease overwhelms her cognitive functioning.

"It's been a long time that I've been waiting for that, and I'm not alone," she said.

Sonia Blanger, the minister responsible for seniors, tabled the bill Thursday. It modifies the act respecting end-of-life care.

"MAID is an end-of-life care, and I emphasize the word 'care.' It's care that allows people to live their final moments as they want," Blanger said at an afternoon news conference in Quebec City.

Right now in Quebec, a person needs to give informed consent when they receive MAID.

In its current form, Bill 11would establish a set of guidelines by which a person could provide an advance request for MAID.They must have a serious and incurable illness.

People with a serious or incurable neuromotor disability will also become eligible for MAID, but not for an advance request. Disorders like depression are not includedbut Parkinson's disease is.

Once the patient is incapacitated by their illness, two professionals would have to agree that the patient is experiencing the level of suffering they described in their request before MAID couldbe administered.

WATCH | Quebec moves to expands access to assisted dying:

Quebec introduces bill allowing advanced consent for assisted dying

2 years ago

Duration 2:35

A new bill tabled in Quebec would allow people with serious incurable illnesses to give advanced consent to end their lives with medical assistance in dying.

Under the bill, a patient who is capable of giving consent to care may, at any time, withdraw their advance request. Bill 11would also require palliative care hospices to offer MAID.

Jasmin Lemieux-Lefebvre says the effort to expand medically assisted dying needs to be more closely examined before it passes. He is a co-ordinator forVivre dans la Dignit, an organization in Montreal that advocates for living with dignity.

"When someone who is incapable of decision-making, they may still be happy with dementia," he said. "What will happen?"

He said Bill 11 doesn't address this possibility, and this is one of many issues that needs to be looked at as it is reviewed in the coming weeks.

Making an informed choice

Nouha Ben Gaied is the director of research and development, quality of services with a provincial Alzheimer's association, the Fdration qubcoise des Socits Alzheimer.

She said her group believes people with Alzheimer's or other types of dementia should have theright to choose their advanced-care plan rather than being expected to give informed consent when their cognitive abilities have failed.

"They should have the right to make free and informed choices," Ben Gaied said, and that includes access to medically assisted dying which is a "personal choice. It's an end-of-life treatment option and it should be seen as such."

It should be a final choice when all the other resources are insufficient, Ben Gaied explained. That means palliative care and home care must be improved, with more support given to those who offer such services.

With Alzheimer's disease and dementia comes a level of cognitive decline that affects memory, attention span, personality and behaviour, she said. And with time, there's a loss of autonomy and dignity, she said.

It's incurable, she said, and people living with dementia should have the same rights, but at a certain point, they won't have the cognitive ability to consent to care.

Pushing for bill to be expanded further

Dr. Georges L'Esprance isa neurosurgeon and president of the province's association for the right to die with the dignity, Association qubcoise pour le droit de mourir dans la dignit. He sayshe is delighted with the proposed legislation.

"From what I've read, it's the person who decides what their limits are," he said. "For example, if they no longer recognize their children."

Dr. Mauril Gaudreault, president of Quebec's College of Physicians, welcomed the bill on Twitter, but reiterated that his organization is in favour of offering MAID to people with mental health disorders as well.

"We will advocate for the rights of people with mental health issues," Gaudreault said.

For now, Demontigny, a mother of three, saysevery day is a challenge as she continues to lose her independence.She saysshe relies on her family to help her, but it's hard knowing that it's going to get worse.

At the same time, she said, she still has her faculties and is able to give informed consent now and that's why she wants the bill to pass sooner rather than later without any more legislative delays.

"It's a challenge every day," she said. "I am learning how to deal with it."