Adults should be able to make an advance request for medical assistance in dying in Quebec following the diagnosis of an incurable and debilitating disease, recommends a special committee.
The recommendation is one of 11 in a report tabled in the National Assembly on Wednesday by an all-party committee tasked with examining the expansion of medical assistance in dying (MAID) laws in the province.
Currently, Quebec law requires that a person be able to give informed consent when receiving MAID, which excludes people with degenerative diseases, including Alzheimer’s disease.
At a joint press conference in Quebec City on Wednesday afternoon, several members of the nonpartisan special committee spoke to the media to review the recommendations.
“We believe that our recommendations reflect the evolution of the perceptions of the Quebec population with regard to medical aid in dying,” declared the chair of the committee and deputy of the Coalition Avenir Québec Nancy Guillemette.
Advance request form recommended
In order to better respect the will of people with neurodegenerative diseases, Quebec deputy Vincent Marissal declared that “capable people, who will ultimately be unfit, should be able to make a prior request for medical assistance in dying following the getting a diagnosis.”
In particular, the committee explained how the new recommendation would allow people to arrange for the procedure before they are no longer able to give consent due to symptoms associated with their condition.
To ensure that the patient acts “in a free and informed manner”, according to the report, the commission recommends that a prior MAID request form 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 medical condition which should give rise to his advance application,” the committee said in the report.
A trusted third party would be responsible for determining when MAID should be administered, based on criteria previously determined by the patient.
The committee also recommends that a notice be placed on the back of provincial health cards when a request for prior consent has been granted.
“Very reassuring” for patients
For committee vice-chair and Quebec Liberal MP, David Birnbaum, Quebec has been a leader in end-of-life care.
It was the first province in Canada to pass legislation legalizing assisted dying in 2014. This law was also the product of an all-party committee.
Birnbaum said Wednesday’s new recommendations reflect the company’s situation.
“We’ve heard compelling, human stories on all sides of this issue, from people who are already faced with a diagnosis of early-onset Alzheimer’s disease, who want to know that their children can be sure they know their wishes,” he said.
Dr. David Lussier is a geriatrician at the Institut universitaire de gériatrie de Montréal and a member of the Quebec End-of-Life Commission, which oversees the legality of individual procedures in the province.
He said his patients with degenerative diseases would greatly benefit from the implementation of these recommendations.
“Knowing that for someone who has like ALS or multiple sclerosis, knowing that if it gets worse they will be able to access medical assistance in dying is very reassuring,” he said.
“It makes the end of their life, their final years, a lot easier because they know 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 MAID practitioner, said the committee’s new recommendations are practical and dignified.
No MAID for people with mental disorders
In March, the commission — made up of 11 elected members of the National Assembly of Quebec, including six government members and five from opposition groups — was tasked with chairing hearings on possible amendments that would broaden access to the MA for people suffering from debilitating diseases such as Alzheimer’s disease and people with mental disorders.
The commission heard from nearly 80 people and organizations during two phases of specific consultations and public hearings, including an online consultation, before tabling its report.
After what the committee called a difficult decision, it rejected the idea of extending MAID to people whose only medical condition is a mental disorder.
According to Birnbaum, the risks associated with offering this option to such people “would have too many variations and therefore could not be tightly controlled.”
Although he said the committee was aware that his proposal might disappoint people with mental disorders for whom MAID could relieve “great suffering”, he made his decision in part because of a lack of consensus among psychiatrists. and other specialists, of the low social acceptability observed in the public consultations. and concern of the Quebec Association for the Prevention of Suicide.
The committee, which represents all parties in the National Assembly, says the next step is for the government to review its recommendations and act quickly.
“We all unanimously supported this report,” Birnbaum said, “and we all unanimously hope that the government will act quickly on our recommendations and introduce legislation that would put them into action.”