The Great Losers

“We need to broaden the concept of disability”

Patrick Lagacé presented a beautiful end-of-life story on Saturday. Sunday, a less beautiful end of life. Interview today with Minister Sonia Bélanger, in charge of updating the End-of-Life Care Act.

Posted at 6:00 am


Sonia Bélanger, a newcomer to politics, is about to navigate a bill in a minefield: reforming the End-of-Life Care Act. In an interview with La Presse, the Minister for Health and Elderly states that it will be necessary to expand the concept of disability for medical assisted suicide (MAD).

Ms Bélanger – CEO of the CIUSSS du Centre-Sud-de-l’Île-de-Montréal until her appointment as a CAQ candidate in 2022 – reminds us from the outset that she cannot enter, out of respect for the National Assembly, in detail of the bill before it is submitted.

It will be soon. If ? The minister didn’t want to say it.

The title of the bill refers to end-of-life care. The hardest part, however, will be medical euthanasia, which has been enshrined in law since 2015. A reform failed last spring.

What vision does Sonia Bélanger have of the AMM as a citizen?

Answer: “Like many people, I evolved on this question between 2010 and 2022. When I heard “medical euthanasia” in 2010, I had my values, perceptions, and fears. And I’ve evolved from that. “Sonia Bélanger reminds her mother, “old, but who is still with us, I’m lucky”. Then she talks about her late father: “I saw his suffering related to dementia, I saw him gradually disappear, I saw the suffering in his eyes. In Quebec we want to die with dignity, that’s clear. »

It is difficult not to see in the words of Sonia Bélanger an echo of the complex issue of medical assistance in dying for people with dementia such as Alzheimer’s: there is much on this subject that the deputies studying the Law 38 project in the spring of 2022, broke his teeth.

The consensus in Quebec to extend the right to MAID for people with dementia is clear, as established by the Special Commission on End-of-Life Care, chaired by MNA Nancy Guillemette1.

But the road to creating a protocol that allows patients to request medical assistance when dying when they are no longer clear is littered with ethical, political, human and legal mines.

Bill 38 failed because MPs ran out of time in the last parliament in the spring. Complex issues and dogged eyes on the clock in a traditionally bipartisan file prompted Minister Christian Dubé to withdraw Bill 38, whose scrutiny was chaotic2.

Sonia Bélanger has given the government the mandate to take the torch in hand. “Exceptional work has been done in the investigation of Bill 38,” she said. I’ll pick up where the spring bill left off. »

In an interview, she addresses the Truchon Gladu saga, named after two disabled people who fought for the right to medical care while dying in 2019 at the cost of a long court battle: “We have seen the suffering of these people. We cannot close our eyes to this event, there are probably other people going through the same thing. We need to broaden the concept of disability. »

This point in particular is very sensitive, since the concept of ‘disability’ varies from person to person and from situation to situation. The state of suffering associated with disability is itself variable: it is an aspect that generates much debate, often emotional.

Minister Bélanger spontaneously raised the issue of medical euthanasia in palliative care homes. In Bill 38 we planned to force homes that do not provide this care to do so. I quote Ms. Bélanger: “Palliative care homes achieve extraordinary things. Now medical euthanasia is also care, it is terminal care. I have certain expectations of palliative care homes. »

When an end-of-life patient in a palliative care home requests medical euthanasia but refuses it, the procedure is as follows: Transfer the person to the hospital for treatment. The minister does not like this picture: “When people are at the end of their lives, they are in pain. A patient transport to the hospital seems unimaginable to me. »

One more vague point for clarification: how many of the palliative care homes that say they offer medical euthanasia actually offer it? I addressed this practice in Sunday’s Chronicle from the perspective of the Rivière-du-Nord Palliative Care Center in Saint-Jérôme, which at the same time says to allow and… not allow AMM3.

I discussed with the minister the case of Montreal’s Marie Clarac Hospital, a private hospital run by Catholic nuns, which refuses to provide medical assistance to dying within its walls.

” Do you mind ?

“Of course that bothers me. We will continue the discussion and I think they will have to offer it. »

A few weeks ago, Quebec was outraged by the horrific death of Andrée Simard4, widow of former Prime Minister Robert Bourassa, at St Mary’s Hospital Centre.

An investigation by La Presse’s Denis Lessard had revealed that we had refused to give adequate doses of sedatives on the pretext that she was not in palliative care. Frau Simard died in excruciating pain.

“Has Ms Simard’s case influenced the bill you are going to introduce?

— It strengthened my belief that all hospitals must have palliative care with trained and competent teams, replied Sonia Bélanger. I emphasize that the quality of care at St Mary’s is high, but it will be important to strengthen the role and training of professionals. »