The story shook Quebec in January: Andrée Simard, widow of former Prime Minister Robert Bourassa, had come to the end of her life in total indignity, at St. Mary’s Hospital Center.
It was his daughter Michelle Bourassa who recounted these dark days of November 2022 in The Press1. Our journalist Denis Lessard investigated2. If I summarize: at the end of life, Mme Simard had suffered a long agony. His pain, according to the account of Michelle Bourassa and two physician friends of the family, was never adequately relieved.
Requests from his relatives were ignored by staff and no attending physician was available, Mme Simard having had the very bad idea of starting to die on a weekend…
In short, the small procedural boxes have had the upper hand over common sense and Mme Simard suffered three days of agony, without the palliative sedation that would have ensured him a dignified and painless end of life.
Nearly three months after the media coverage of the death of Andrée Simard, the dust has settled. Investigations are underway, particularly at the College of Physicians.
But Michelle Bourassa, she does not take off.
“Christian Dubé, the Minister of Health, called me to apologize,” she told me in an interview. But I told him: “Don’t apologize, do the right thing!” »
His letter in The Press and Denis Lessard’s investigation released a word, she said. Michelle Bourassa received a tsunami of testimonies, people who told her that they too had seen a loved one die without their pain being relieved.
Since the death of the one she calls “the wife of [sa] life”, the daughter of the former prime minister is on a mission: she wants approaches and mentalities to change, in the hospitals of Quebec.
To carry out this mission, Michelle Bourassa created a Facebook page with friends (#MortEnSilence – For the respect of fundamental rights at the end of life). She invites people to subscribe to the page and fill out a form to document cases of unworthy deaths, using a register: “It happens everywhere, she notes. Montreal, Saint-Jérôme, Sherbrooke: we have testimonials from all over Quebec. With the register that we are compiling, we want to have a clear portrait of the rights that are not respected, for people at the end of life. »
These rights exist and they are set out in the Act respecting end-of-life care3. Michelle Bourassa finds it important that Quebecers at the end of life – and their loved ones – know about these rights.
In my mother’s case, several rights were not respected by St. Mary’s Hospital. Among other things: my mother died in a room shared with another person: she was entitled to a single room. We were not offered any support. She was not entitled to continuous palliative sedation…
Michelle Bourassa, daughter of Andrée Simard
Mme Bourassa also cites the right to receive end-of-life care at home and to benefit from a clear treatment plan.
She notes that Quebecers are unaware of their rights at the end of life and that hospitals themselves can cut corners.
“What I want is for us to continue talking about this issue, because we know how it works: over time, we forget. And I don’t want anyone to forget. »
In an interview, Michelle Bourassa is inexhaustible about these unworthy deaths, too many according to her. Three months after its release in The Press, she makes the end of life of her fellow citizens a personal cause: “Before that, I did not know what I was for on Earth. There, I know! »
She speaks of “omerta” of nursing staff and unions: “We tell you as little as possible and when you ask questions, you piss them off, you bother them, they have no compassion…”
When she complained, at St. Mary’s Hospital Center, she was told that a patient ombudsman was taking complaints. She gets carried away with this memory: “My mother died on the weekend, the ombudsman is not there, the weekend. And we didn’t need an answer in 45 days…”
Michelle Bourassa also wants to convey the message of the importance of palliative care at home. She cites the example of the NPO Nova Home Care, which serves hundreds of patients thanks to private donations and foundations… And very little public funding4.
“My mother used hospital resources for three days, three days too long. If I had been offered the option of palliative care at home, it would have cost 50% less. Instead, we find ourselves at the end of life in hospitals… Where they botchent! »
The appeased reader will say that Michelle Bourassa exaggerates. No doubt that the anger aroused by the painful death of his mother Andrée makes him lose some nuances, I readily agree.
But it’s not by accepting unacceptable situations, head down, that things will change either…
“I want to be the guardian of these cases,” she told me.
BEYOND THE MISCELLANEOUS — Two weeks ago, I chronicled the fate of this 15-year-old teenager, stabbed in Longueuil. I had spoken to his grandfather, who was in all his states in front of the permanent sequelae suffered by his grandson…
A few echoes from the victim’s high school have reached me. Teachers would be angry, I wouldn’t have the whole portrait, the stabbed teenager would himself be a vector of trouble, we whisper…
I do not know if that’s true.
I just know this: a teenager was stabbed, presumably by two other teenagers, and it’s terrible. It is appalling, for one and for the other. It’s appalling for abusers, too, of teenagers. It starts badly a life, for one and for the others.
That was the chronicle: the delayed horror, beyond the news item, beyond the one-does-not-fear-for-one’s-life, the shock wave in the life of a 15-year-old – just 15 – and in the lives of his loved ones. And throw a rock at me if you want, but I also have a thought for the two little idiots who have been accused…
At that age, even if they have hair on their chins, they are what they are: children.