Advance consent for medical aid in dying should be expanded for Quebec adults, committee says

Adults should be allowed to make an advance request for medical assistance in dying in Quebec following the diagnosis of an incurable and incapacitating disease, a special committee recommends.

The recommendation is one of 11 in a report tabled at the National Assembly on Wednesday by an all-party committee looking into expanding medical assistance in dying (MAID) laws in the province.

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

At a joint news conference in Quebec City on Wednesday afternoon, several members of the non-partisan special committee spoke to the media to go through the recommendations.

"We believe that our recommendations reflect the evolution of perceptions of the Quebec population with regard to medical assistance in dying," said committee president and Coalition Avenir Québec MNA Nancy Guillemette.

Advance request form recommended

In order to better respect the wishes of people with neurodegenerative diseases, Québec Solidaire MNA Vincent Marissal said that "capable people, who will ultimately be incapacitated, should be able to formulate an advance request for medical assistance to die as a result of obtaining a diagnosis."

In particular, the committee outlined how the new recommendation would allow people to make arrangements for the procedure before they are no longer able to give consent due to the symptoms associated with their disease.

To ensure the patient is acting "in a free and informed manner," according to the report, the committee recommends an advance request form for MAID be completed and signed in front of a doctor, as well as countersigned by two witnesses or be made in notarized form.

"The commission recommends that the individual clearly identify the manifestations of his or her medical condition that should give rise to his or her advance application," said the committee in the report.

A trusted third party would be responsible for determining when MAID should be administered, based on criteria determined in advance by the patient.

The committee also recommends that an advisory should be noted on the back of provincial health cards when an advance consent request has been granted.

'Very reassuring' for patients

For committee vice-chair and Quebec Liberal MNA David Birnbaum, Quebec has been a leader with respect to end-of-life care.

It was the first province in Canada to pass a law legalizing assisted dying in 2014. That legislation was also the product of an all-party committee.

Birnbaum said Wednesday's new recommendations reflect where society is at.

"We heard compelling and human stories on every side of this issue, from people who are already before a diagnosis of early onset Alzheimer's, who want to know that their children can be secure in knowing their wishes," he said.

Dr. David Lussier is a geriatrician at the Institut universitaire de gériatrie de Montréal and a member of Quebec's End-of-Life Commission, which oversees the legality of individual procedures in the province.

He said his patients with degenerative disease would benefit greatly should these recommendations come into law.

"Knowing that for someone who has like ALS, or multiple sclerosis, knowing that if they get worse, that they'll be able to access medical assistance in dying is very reassuring," he said.

"It makes the end of their life, their last few years, much easier, because they know that they won't have to go through the whole disease if they don't want to."

Dr. Georges L'Espérance, president of the Quebec Association for the Right to Die with Dignity (AQDMD) and a practitioner of MAID, said the committee's new recommendations are practical and dignifying.

No MAID for those suffering from mental disorder

In March, the committee —comprised of 11 elected members of Quebec's National Assembly, including six government MNAs and five from opposition groups — was tasked with presiding over hearings on potential amendments that would widen access to MAID to include people suffering from incapacitating illnesses such as Alzheimer's disease, and those suffering from mental disorders.

The committee heard from nearly 80 people and organizations during two phases of special consultations and public hearings, including an online consultation, before tabling its report.

After what the committee said was a tough decision, it rejected the idea of expanding MAID to people whose sole medical problem is a mental disorder.

According to Birnbaum, the risks associated with giving these people this option "would have too many variants and thus could not be tightly controlled."

While he said the committee is aware its proposal could disappoint people with mental disorders for whom MAID could alleviate "great suffering," it came to its decision in part due to lack of consensus from psychiatrists and other specialists, low social acceptability observed in public consultations and concern from the Quebec Association for Suicide Prevention.

The committee, which represents every party in the National Assembly, says the next step is for the government to review its recommendations and act swiftly.

"We all unanimously supported this report," Birnbaum said, "and we all unanimously are of the hope that the government will now act promptly on our recommendations and present a bill that would put them into action."