Nathalie Collard: For whom and why did you write this book?
Jocelyne Saint-Arnaud: I had published several works intended for health professionals and I gave many conferences. I realized that there was a demand among the population to be better informed about the possibilities available to us to plan and make our choices known in advance regarding the end of life. The goal is not to leave loved ones with all the responsibility for making difficult decisions, especially when it comes to stopping life-sustaining treatment. The book mainly talks about people who die in hospital and therefore, the problems that are raised are linked to everything that can be done in the hospital to maintain life.
NC: You say that communication is essential, with our loved ones and with health professionals?
JS-A. : It’s difficult to talk about the end of life. Doctors themselves use the term “gloomy prognosis” to say that there is no longer any hope of recovery. However, there are ways to make your wishes known, such as advance medical directives. I present each option in the book, I explain their usefulness and their limits, their legal and ethical aspect.
NC: That said, beyond filling out documents that will be placed in the medical file, it is important to talk about it with your loved ones.
JS-A. : When we are at the end of our life, it is not said that we will be able to tell them that we do not want to be resuscitated, for example. We often see children who discover their parents’ wishes and who are a little shocked because there was no prior discussion about the end of life. It’s important to talk about these things.
NC: Speaking of resuscitation and treatments, do you think that we medicalize the end of life too much?
JS-A. : On this subject, I recommend the book Anticancer by French doctor David Servan-Schreiber, now deceased. He said that death is like birth, but that with advances in medicine, it had been medicalized, that it had become very “technical”. I quite agree with him. The aim of my work is therefore to show what the limits of these techniques are and to explain that it is possible to refuse them. I think that if home care were more developed in Quebec, we would have other conditions of death. In my opinion, it is not always useful to prolong life and make the person suffer with treatment that becomes more burdensome than the disease itself.
NC: How can we ensure that our wishes will be transmitted and respected?
JS-A. : You must complete the documents (they are all presented in the book) and ideally these documents must be entered in your medical file. When I sat on the ethics committee of the Hôpital du Sacré-Cœur-de-Montréal, I recommended that we add a tab dedicated to advance medical directives so that staff would have easy access to them. This is something that is easy to implement and could be standardized across the province. This avoids the problems that can arise when the person is no longer autonomous and no longer has the power to express their wishes. It also avoids arguments, especially when children with different opinions have to make decisions for their parent.
NC: Over time, the idea has emerged that medical assistance in dying is the only way to die without suffering and on one’s own terms. What do you think ?
JS-A. : If we are in a hospital environment, we can refuse treatment and still have a peaceful and non-painful death without having access to medical assistance in dying. I don’t talk about MAID that much in my book. I think there are still other ways to get to that point.
The comments collected have been abbreviated for the sake of brevity.
Extract
“Regarding end-of-life care, it is not uncommon for members of the same family to disagree on stopping treatment which turns out to be futile, causes pain without providing any benefit to the family. person involved, in addition to maintaining a strictly biological life. The reasons for family opposition to stopping treatment are multiple. Some people do not accept the death of a loved one, being unable to grieve, others have financial interests to satisfy by prolonging that person’s life, and finally, some try to honor a promise to do everything possible to sustain life. »
Who is Jocelyne Saint-Arnaud?
A philosopher specializing in health ethics, Jocelyne Saint-Arnaud is an honorary professor at the University of Montreal, a trainer for the Order of Nurses of Quebec, an associate researcher at the Ethics Research Center and the Institute for Research in public health from the University of Montreal. She is particularly interested in the limits of health resources, the moral distress of caregivers and end-of-life care.
End of life care: Who decides?
Boreal
222 pages