An opinion piece first published in Ledevoir 22nd October 2024 authored by Yvon Bureau
The author is a social worker. This letter is from a son “standing and LIVING to the full” to his father
My father, J.-Ernest Bureau, died in Saint-Georges de Beauce on October 18, 1984. That was 40 years ago. In the healthcare world of the time, his end of life was very difficult to live with, even undignified. It took place in a hospital in Quebec City. Fortunately, at his express request and with the help of his loved ones, he went to die at the hospital in his hometown.
Two days before he died, I promised him this: âDad, dying in Quebec is going to change.â This promise was kept. With constancy. With tenacity. With energy. With audacity. With solidarity. Finally, with success, because the world of end-of-life care has changed, both for loved ones and caregivers, as well as in care facilities. For the better. And it will continue to improve.
To my father, in the newspapers, I wrote two letters. On October 20, 2014, âPromise made, promise kept, dadâ appeared in L’actualitĂ© . And on October 17, 2019, âDying with dignity: letter to my father, J.-Ernestâ appeared in L’Ăclaireur ProgrĂšs . On the occasion of the 40th anniversary of my promise and his death, I am writing to him today the following in Le Devoir : âPromise made and promise kept again.â
Dear Dad, even infinitely far away and wherever you are, it is a deep pleasure to unite with you. Since 2019, is there still anything new in this noble cause of dying enlightened and free? Oh yes! A lot!
First, you know that Ghislain Leblond and I were co-presidents of the Mourir digne et libre collective, and this, since the fall of 2008. With valuable collaborators, we participated in major changes. On October 31, 2021, our collective chose to bow out with pride in the work done, and with peace of mind. We were reassured of the continuity of the work started thanks to the remarkable presence of the Quebec Association for the Right to Die with Dignity and its president, Dr. Georges L’EspĂ©rance. This association has an exceptional site, to be consulted regularly, especially with regard to the care of medical assistance in dying (MAID).
What also reassures us, Dad, regarding this new end-of-life care, is this: a big surprise awaited the doctors who provided this care. The patients who received MAiD were almost all filled with immense serenity. Surprising. Impressive.
In addition, here is what impresses us. All palliative care homes have become end-of-life care homes. All end-of-life care is provided there, including MAiD. Also interesting, on October 30, Quebec will make possible a new advance request for a person with a diagnosis of neurodegenerative disease.
Here is also, as a human being and as a social worker, what relieves me enormously: in Quebec, the number of suicides and assisted suicides has decreased. Positive effects both on relatives and caregivers. This is comforting and encouraging.
Dad, now here’s what’s bothering me a little. It’s the discourse of the opponents of MAiD. They claim that almost no one would ask for MAiD if there were more palliative care available. However, the vast majority of those requesting this care already receive excellent palliative care!
Some people wonder why Quebec is the place in the world where MAiD is most commonly performed: in 2023, nearly 7% of end-of-life care. It’s quite simple: since the 1960s and 1970s, Quebecers have distanced themselves enormously from religion and opted for secularism. In 1985, the arrival in the media of the biological will (or living will) was the start of a long journey of mentalities regarding end-of-life care.
Added to this are 25 years of presence. Then comes the creation of new major stars. In 2009, the CollĂšge des mĂ©decins du QuĂ©bec affirmed and ruled loud and clear that MAiD is âappropriate, proportionate and personalized care.â This was a tipping point; almost all the groups concerned approved it. On December 4, 2009, the National Assembly of Quebec unanimously created the Special Commission on the Question of Dying with Dignity. Throughout Quebec, 29 days of public consultation took place. Extraordinary!
And, in March 2012, came the important and remarkable report Dying with Dignity . And, in March 2014, by a very large majority, the National Assembly of Quebec adopted the Act respecting end-of-life care. And since December 2014, MAiD has been part of end-of-life care in Quebec; approximately 22,000 people will have received it by December 2024.
Dad, that’s basically why so many Quebecers ended their lives with this treatment. Now you see why it’s not surprising. And it won’t be a surprise if this percentage continues to increase. I have to tell you too. Quebec inspires â and will inspire â many countries. Here, my thoughts go to France; I hope it will dare to let itself be inspired by the Quebec experience.
Oh yes, I also have to tell you about this: during all this time, the Quebec Palliative Care Association held its annual congress; the last one, the 33rd , took place last spring.
You may be wondering, Dad, if I still have dreams about end-of-life care in Quebec? Oh yes! Here they are. The use of a unifying and inclusive terminology, namely this one: end-of-life care. The creation of a Quebec policy on end-of-life care. The first Quebec symposium on end-of-life care. All basic costs in end-of-life care homes and units are paid by the State. An official and regular invitation to Quebecers aged 60 and over to write, sign and place their advance medical directives in the official Quebec registry. An invitation to Quebecers living in institutions to update their individualized care plans regularly and as needed.
Why, Dad, still so many dreams? It’s simple. It’s so that in Quebec, dying becomes more and more enlightened and free, more human, more dignified, more respectful of each person, in their values, in their beliefs, in what has or does not have meaning for them, in their dignity. It’s so that the person, at the end of their life or at the end of their life, is and remains at the heart of the information and decision-making processes. It’s so that, increasingly, in the world of end-of-life care, the primacy of the sole interest of this person reigns. And that the informed and free choice reigns between the different end-of-life care. Very important.
Interesting fact. Since 1984, we have gone from dying with dignity to dying with dignity and dying with my dignity. These passages say a lot about the evolution of care. You know my interest in terminology!
You see, Dad, how far I have come since and through my promise that I made to you and that I continue to keep. Standing. With tenacity. With pride. With solidarity with all the many people who are committed, in Quebec, and also with many people in the world, for a dying that is more and more enlightened, more and more free, more and more dignified and more and more human.
You understand, Dad, since 1984, in the world of end-of-life care, it has made such a difference! For the better. On this 40th anniversary of my promise made and kept, know that you live in my heart and my thoughts, with great affection.
On this, I return to this noble work. There is still much to do
https://www.ledevoir.com/opinion/idees/822120/idees-promesse-aide-changer-facon-mourir-quebec
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