The disability divide: Experts debate Quebec's proposed expansion to medical assistance in dying

Two views were heard Tuesday on whether medical assistance in dying (MAID) should include disabilities qualified as "neuromotor" alone.

Several parties weighed in on the Legault government's bill to extend end-of-life care during public consultations at the national assembly.

On the one hand, groups like the Collège des médecins say the adjective "neuromotor" should be removed to include other types of disability, aligning with the federal government's approach to MAID.

On the other, former Parti Québécois MNA Véronique Hivon -- considered the "mother" of the current MAID law in Quebec-- is calling for caution and fundamental debate when the definition of "disability" is "extremely broad."

Minister of Health and Seniors Sonia Bélanger introduced Bill 11 last month. If passed, it would allow those with serious and incurable diseases leading to incapacity, such as Alzheimer's, to make an early application for MAID.

It will also make MAID accessible to those with severe and incurable neuromotor disabilities (paraplegia, cerebral palsy, amputation after an accident, etc.).

In the eyes of the Association québécoise pour le droit de mourir dans la dignité (AQDMD) and the Collège des médecins du Québec, the term "neuromotor" isn'tappropriate.

They argue its use contradicts the Criminal Code eligibility requirements for MAID, which have excluded such an adjective since 2016.

"Any illness leads to a disability whether it is mild or severe, temporary or transient. And every disability comes from illness," said neurosurgeon and AQDMD president Dr. Georges L'Espérance.

To the concerns raised about possible abuses caused by ommission of the word "neuromotor," L'Espérance said several preventative guidelines are already in place, such as the criteria for incurable and serious illness.

"Let's say I have a disability because I cut my middle finger. Well, it may be incurable, but it's not a serious disease, and it doesn't lead to an irreversible decline," he gave as an example.

L'Espérance also said that severe intellectual disability should be excluded from the law because of consent issues.

The main concern of the Collège des médecins regards people severely affected by disabilities that don't qualify as neuromotor.

"The notion of disability is clear everywhere in Canada, except here. To our knowledge, there has been no drift anywhere in Canada on this subject," said Collège President Dr. Mauril Gaudreault, calling for a focus on the person's overall condition and not the origin of the disability.

According to him, the guidelines to avoid slippage are clear and sufficient: "By wanting to clarify more [the notion of disability], I think we are complicating things," he said.

'NO SMALL MATTER'

Hivon said the notion of disability is "not a small matter" or one for "small debates."

"Who can judge on what principle? Would it be more painful, for example, to lose the use of one's legs than to lose the use of one's sight or hearing? Who is going to determine that?" she asked, inviting parliamentarians to push their consultations online.

Hivon is concerned that the lack of definition or restrictions around the term disability opens the door to MAID for cases of severe and incurable intellectual disabilities wherein people can still consent.

The former MNA for Joliette believes Quebec would be setting a trap for itself if it decided to harmonize with the federal government and the Criminal Code.

"We would never have moved in 2009, the Criminal Code was not open to medical assistance in dying. And now we wouldn't move on early application," said Hivon.

The chair of Quebec's commission on end-of-life care, Dr. Michel Bureau, believes removing the "neuromotor" qualifier would risk worrying "98 per cent" of disabled people who are not currently concerned.

"They won't ask for medical aid in dying. They've never thought about it, their loved ones have never thought about it. And now you are going to ask them. I think we are asking people who do not want to hear the question," he said.

Minister Bélanger acknowledged that the notion of neuromotor disability was far from a consensus.

Her draft legislation mirrors the entirety of Health Minister Christian Dubé's Bill 38, which failed to pass last June.

The opposition criticized him for introducing it too late and for including a surprise provision on severe neuromotor disabilities. That provision was dropped in an attempt to speed up the passage of the legislation.

On Tuesday, participants also urged legislators to clarify provisions surrounding the denial of MAID and the involvement of family members.

Consultations are scheduled to continue Wednesday.

This report by The Canadian Press was first published in French on March 14, 2023.