After several months of hearings, debates and reflection, the 184 members of the Citizens’ Convention on the end of life have come out in favor of opening up active assistance in dying (AAM) in France. At the same time, Emmanuel Macron indicated that he wanted to translate this citizen process into a law “by the end of summer 2023”.
Announcements that divide caregivers, driven by the same desire to best support their patients at the end of life, but which for many of them refuse to help them die. In his work Die on prescription or be accompanied until the end?* (editions du Rocher), Dr Véronique Lefebvre des Noëttes, psychiatrist in geriatrics and doctor of practical philosophy and medical ethics, gives her testimony as a doctor on the end of life, and pleads as a priority for the development of palliative care units throughout the territory.
You write in your book that to this day one can still “die badly in France”. For what ?
This is paradoxically due to progress in medicine: we thought we could cure everything, master everything, including death, in a certain transhumanist utopia. But although it has become deritualized, taboo and medicalized, this death that we do not want to see remains inevitable. In our ageist society which extols the values of autonomy, old age and death have become obscene. Look at the fate reserved for our old people during the Covid crisis! Society was ready to sacrifice them.
And despite the Claeys-Leonetti law which provides for equal access to palliative care, the reality on the ground is quite different. In my hospital, where I have worked for thirty-seven years, although there are 1,000 geriatric beds, there is no palliative care unit! And to this day there are still twenty-one departments that have no palliative care unit.
Why is there currently no palliative care accessible to everyone, everywhere?
This requires political will. However, for thirty years, we have been on the fifth palliative care plan, the texts follow one another but the politician has not provided sufficient means to create jobs, so that each person at the end of their life can be accompanied by competent personnel. and trained in this difficult specialty. Instead, the lack of means and personnel leads to a forced dehumanization of the link between caregivers and patients, from which all suffer.
Quality palliative care is expensive: it takes small units of a dozen beds, many caregivers, psychologists, art therapists and volunteers. Such units exist, such as at the Sainte-Périne hospital or at the Jeanne-Garnier medical center, where music therapist Claire Oppert, who comes to play the cello in the room of the dying, to whom she brings comfort and peace. But these are exceptions.
In addition to the lack of resources, how can we restore more ties and empathy in end-of-life support?
Through training: you must not only learn to follow protocols, but also to have this bond of empathy with your patient, to best support him at the end of his life, know how to hold his hand, listen to him, appease him. My previous book, The strength of the caress, insists on the fundamental importance of this empathy. It is this bond of humanity that I want to rehabilitate in palliative care.
Empathetic and ethical end-of-life support requires constant work of reflection within the teams to develop, for each patient, the most appropriate care to avoid physical pain and psychological suffering. You have to talk about it upstream, and debrief downstream: is the patient off to a good start? Could we have done otherwise? For each case, the end of life is always complex.
The members of the Citizens’ Convention on the end of life have come out in favor of the opening of active assistance in dying (AAM). What did you think of this consultation and its conclusions?
On the form, it is very good to collect the word of the citizens, but for such a subject, it would also have been necessary to organize a consultation with the caregivers, which was not done.
The report recommends first of all to develop palliative care, obviously, I agree on this point. He then proposes nineteen models of access to the AAM, we will see what the national representation will do with them. But it seems very complicated to me to give a new framework to the end of life when a complete legislative framework already exists, but which to date has still not been implemented. France is not behind in its reflection on the end of life, but we are already applying the existing laws.
If there was equal access to quality palliative care throughout the territory, would the opening of the AAM still be favored by patients, in your opinion? Would they no longer want to be able to choose their death?
I think it would not be necessary if we developed a complete territorial network of palliative care. There will probably always be a few irreducible cases, like Anne Bert. And we have to listen to patients’ requests to end it, but when we have been able to think ahead of the conditions worthy of the end of life, that we can, wherever we live and whatever our means, be taken care of in dedicated units, there is an appeasement, which often puts an end to this imperative request.
Besides, what is choosing one’s death? Is it a catalog where one chooses curare or pentothal? Does the caregiver become a service provider? There is no question of it, we do not control his death. On the other hand, we should be able to control the conditions.
As a doctor, how do you view the possible opening of active assistance in dying?
Evil ! We took an oath, our vocation is to heal, to relieve, not to kill, it’s brutal. Like the Minister of Health François Braun, we are 800,000 caregivers opposed to euthanasia. There will no doubt be some colleagues who, in the name of the same values of humanity that I defend, will make this lethal gesture, but I will not. If it is necessary to push the syringe, I will do it, but to provide deep and continuous sedation until death, as I already do, as it is already provided for in the law.
Caregivers have been suffering for many years, they have been wrung out by the Covid crisis and no longer see meaning in their profession. And today, we are told that the urgency is the opening of euthanasia, as if it were a technical gesture and a right, it is absurd. Instead, let’s restore meaning to the care professions, and promote “aging well” in France.