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

Adults should be allowedto make an advance request for medical assistance in dying in Quebec following the diagnosis of an incurable and incapacitating disease, a specialcommitteerecommends.

The recommendation is one of 11 in a report tabled at the National Assembly on Wednesday by anall-partycommittee lookinginto expanding medicalassistance in dying (MAID) laws in the province.

Currently, the Quebec law requiresa person to be able to provide informed consent at the time of receiving MAID, which excludes 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 QubecMNANancy Guillemette.

Advance requestform recommended

In order to better respect the wishes of people with neurodegenerative diseases, Qubec 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 procedurebefore they are no longer able to give consent due to the symptoms associated withtheir disease.

To ensure the patient is acting "in a free and informed manner," according to the report, the committee recommends anadvance 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 MAIDshould be administered, based on criteria determined in advance by the patient.

The committeealso recommendsthat an advisory should be noted on the back of provincial health cards when an advanceconsent request has been granted.

'Very reassuring' for patients

Forcommittee vice-chair and Quebec LiberalMNA David Birnbaum, Quebec has been a leader with respect to end-of-life care.

It was the first province in Canada topass a lawlegalizingassisted dying in 2014.That legislation was also the product of anall-party committee.

Birnbaum said Wednesday'snew 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 griatrie de Montral and a member of Quebec'sEnd-of-Life Commission, which oversees the legality of individual procedures in the province.

He said hispatients 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'Esprance, president of the Quebec Association for the Right to DiewithDignity (AQDMD) and a practitioner of MAID, said the committee's new recommendationsare practical and dignifying.

No MAID for those suffering from mental disorder

In March, the committeecomprised of11 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 fromincapacitating illnesses such asAlzheimer's disease, and those suffering from mental disorders.

The committeeheard 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, itrejected the idea of expanding MAIDto people whose sole medical problem is a mental disorder.

According toBirnbaum, 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 withmental 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 theQuebec 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," Birnbaumsaid,"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."