Montreal

Quebec tables bill to include advanced consent in assisted dying

Quebec lawmakers have presented legislation that, if passed, will expand medical aid in dying (MAID) to allow people to ask for it before they are incapacitated by an incurable disease like Alzheimer's.

Proposed expansion of MAID does not include mental illness

One hand is holding another.
The Quebec government has tabled a bill that would allow people to give prior consent for medical aid in dying if they have Alzheimer's or another illness that would render them legally incapable of giving informed consent later. (Ben Nelms/CBC)

Quebec lawmakers have presented legislation that, if passed, will expand medical assistance in dying (MAID) and allow people to ask for it before they are incapacitated by an incurable disease.

Bill 11, which was tabled on Thursday by Sonia Bélanger, the minister responsible for seniors, modifies the act respecting end-of-life care to allow people to make an advanced request for MAID. 

"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," Bélanger said at an afternoon news conference in Quebec City.

"The measures presented in this bill were thought out and supported by opinions expressed by citizens and experts and we have the opportunity to continue our reflection accompanied by different groups who will come to present their positions."

If passed, it will allow those suffering from degenerative diseases, like Alzheimer's, to apply for MAID and give advanced consent.

In the spring of 2022, lawmakers had proposed changes to Quebec's MAID framework to allow for advanced consent, but they decided at the time to postpone changes to law, citing the need for further discussion. 

In its current form, Bill 11 would establish a set of guidelines by which a person can 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.

They must then make a free and informed request — that is notarized or made in the presence of witnesses — describing the extent of the suffering they no longer wish to tolerate. 

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 can be administered.

Under the bill, a patient who is capable of giving consent to care may, at any time, withdraw their advance request.

Bill 11 also would require palliative care hospices to offer MAID. Currently, not all palliative hospices provide it, which, Bélanger said, forces some Quebecers to take ambulances to facilities where they can receive the procedure.  

The bill would expand the end-of-life care specialized nurse practitioners can provide, allowing them to administer "continuous palliative sedation" during the end-of-life process.

The Quebec bill does not expand MAID to those with mental disorders like depression, stating that "a mental disorder is not considered to be an illness."

Bélanger said that during consultations with medical professionals, the public and advocacy groups, no consensus emerged around the inclusion of mental disorders in the MAID legislation, so Quebec is keeping it out. 

A consultation process will take place before the bill can be adopted.

Marc Tanguay, the interim leader of the Quebec Liberal Party, said his party would permit its MNAs to vote freely on the bill according to their conscience, and he was anticipating an important, non-partisan discussion in advance of a vote. 

"We need to do diligent work but serious work so that the law is clear and is applied uniformly everywhere in Quebec," he said.

The Quebec Association for the Right to Die with Dignity hailed the bill as a step forward for patients' rights. 

"Thanks to advance requests, people affected by a cognitive neurodegenerative disease will be able to decide to benefit from medical assistance in dying at a later date. This change will offer them a peaceful end to their lives," Dr. Georges L'Espérance, the president of the association and a MAID practitioner, said in a statement.

On Wednesday, Living with Dignity, a group that advocates against MAID, favouring improved medical and palliative care in lieu of the procedure, posted a message on social media declaring its opposition to the expansion of MAID in Quebec.

"We hope that the upcoming debates will also highlight the many pitfalls of medically assisted dying of incapacitated persons, even by advance request," the organization wrote, adding that there are "major ethical issues that will merit extensive consultation in parliamentary committee."

The federal government legalized MAID in June 2016 — after Quebec had already done so — but, at first, only those whose deaths were "reasonably foreseeable" qualified. This essentially limited MAID to those with terminal illnesses who were nearing the end of their lives.

In October 2020, the federal government expanded the law and did away with the requirement that the death be reasonably foreseeable. The change allowed people with "serious and incurable illness, disease or disability [excluding mental illness, for now]" to qualify for MAID.

Patients must also be in an "advanced state of irreversible decline in capability" and be enduring intolerable suffering "that cannot be alleviated under conditions the person considers acceptable."

Provinces and territories have their own regulations and policies for implementing MAID.

Currently, Quebec law requires a person to be able to provide informed consent at the time of receiving MAID, which excludes people with degenerative illnesses, including Alzheimer's disease.

In December 2021, a non-partisan committee recommended that adults in Quebec diagnosed with incurable and incapacitating diseases be able to make an advanced request for MAID prior to them becoming incapacitated by their illness.

Canadians whose only ailment is a mental illness like depression or a personality disorder are scheduled to be eligible for MAID under the federal regulations in March 2024. Such requests were initially slated to be legalized this year, but Justice Minister David Lametti said a delay was necessary to allow the medical community to prepare for the complexities of those cases.

Between April 2021 and March 2022, 5.1 per cent of deaths in Quebec were the result of MAID. 

But recent figures obtained by Radio-Canada indicate that number is growing: as many as seven per cent of all deaths in Quebec are now the result of MAID. The figure cements Quebec as the jurisdiction with more medically assisted deaths per capita than anywhere else in the world. 

ABOUT THE AUTHOR

Matthew Lapierre is a digital journalist at CBC Montreal. He previously worked for the Montreal Gazette and the Globe and Mail. You can reach him at [email protected].

With files from Radio-Canada