This specialist in palliative care and old age evokes the paradox of a society that “denies” death, but which sets it up as “freedom” by considering legalizing euthanasia.
After four months of work, the end is over at the Palais d’Iéna. The 184 members of the citizens’ convention on the end of life meet one last time at the headquarters of the Economic, Social and Environmental Council (Cese), in Paris, on Sunday April 2, to definitively adopt the report which they will submit on Monday to Emanuel Macron. During nine weekends of hearings and debates, these citizens drawn by lot and from all walks of life developed proposals around two main areas: improving the care of end-of-life patients and considering access to euthanasia or assisted suicide in France. Their conclusions will feed into the thinking of the government, which could legislate on the subject by the end of the year.
Shaken by the 165,000 deaths from Covid-19 and faced with the public hospital crisis, our society is therefore preparing to open a sensitive debate. Is she ready for it? Clinical psychologist Marie de Hennezel describes a report “very paradoxical” of the French with death, between “denial” And “taboo” on the one hand and an increasingly asserted desire to allow everyone to “to master” his last days on the other.
From 1987, and for nine years, Marie de Hennezel worked with people at the end of life, in the first palliative care unit created in France, in Paris. She drew from this experience a bestselling book, Intimate Death (1995), prefaced by François Mitterrand, whose confidante she was during her long fight against cancer. In 2003, at the request of the government, she produced a report entitled “End of life, the duty of accompaniment”, which inspired the first French law specific to the rights of patients at the approach of death, known as the Leonetti law. of 2005. Now aged 76, she opposes any legalization of active assistance in dying in France and campaigns for better consideration of the elderly in society.
France info: In a recent report, the National Advisory Council on Ethics noted that “the end of life is no longer perceived as an essential time in the human experience”. Do you share this observation?
Marie de Hennezel: Yes. We want to skip this time. We want to anticipate death or be asleep in the last moments. It is considered that to die well is to die in one’s sleep, quickly, without disturbing others. But the time to die is valuable. The last exchanges that a dying person can have with his loved ones allow him to leave peacefully and help others to experience a different mourning.
Let’s not forget the anthropological break caused by the ban on visits during the Covid-19 crisis. Many families have been deprived of farewell rituals. The last words and the last gestures are irreplaceable. These are times of meditation on finitude, a confrontation of each one with his own death.
Wouldn’t the fact of being able to choose the moment of one’s death make it possible to better organize one’s end of life and to restore strength to this “essential time”?
I understand that some people may think that this is the only way to be subject to his death. But it’s still a shame. Assisted suicide and euthanasia would pose other problems. Think of loved ones. Those who accompany the person may feel guilty for not having succeeded in keeping him or her alive. Those who don’t go feel guilty for not being there in the final moments. Whatever we do, we feel guilty. It’s still quite violent. As for doctors who practice euthanasia, this is not insignificant. I took it in psychotherapy. They had nightmares afterwards. It is a radical, brutal act.
For the past fifteen years, you have led support groups with retired people. What is their view of their end of life?
There are two audiences. The 60-80 year olds I meet want to preserve their autonomy and often be able to choose the moment of their death. It is a generation that is still in good health, which wants to master its last moments. For the 80-100 year olds with whom I talk, it’s completely different. They are not asking for a lethal injection, but they are all thinking about death and would like to talk about it. Only they have no one to do it with. Families don’t often want to address the issue, nor do residence staff. Intergenerational solidarity is crumbling. There is immense loneliness.
What do these old people want to say?
They apprehend death as a destiny in a relatively peaceful way. On the other hand, they dread the way in which they will die, with the specter of being transferred to the hospital and ending up on a stretcher in the emergency room, as happens too frequently.
“Older people also wonder about the meaning and usefulness of their existence.”
Marie de Hennezel, psychologistat franceinfo
Their fear: to be considered one day as a burden for society. “Won’t we be pressured into having the grace to leave?”told me an 86-year-old woman. “Maybe we will be made to feel guilty for wanting to stay alive”, told me another. We live in a young society, which values performance, profitability and efficiency. These people see it very well.
A law on old age, promised during the previous five-year term and intended to improve the living conditions of people with loss of autonomy, was finally abandoned. How do you interpret it?
This is a very bad signal, especially since there is now talk of a law on the end of life. The baby-boomer generation is beginning to arrive in the vulnerable areas of old age. She clearly perceives the lack of investment in terms of support, housing, mobility… When you are going to have almost 30% of the population losing their autonomy, these elderly people are likely to feel like a burden for society. . You will see that a number of people will have the feeling of an unworthy old age and will cry out for death. Let’s take care to preserve their self-esteem.
Where is our society in its relationship to death?
It maintains a very paradoxical relationship with death. There is a sentence from anthropologist Louis-Vincent Thomas that sums it all up: “We are in a thanatophobic and deadly society.”
“For fear of death, we want to anticipate it.”
Marie de Hennezel, psychologistat franceinfo
Coping with death and staying alive to the end is not easy in a world that denies death and values autonomy and mastery over one’s life. We come to talk about “right to death”of “freedom to choose when to die”. This desire for mastery is a way of facing one’s fear. But it is above all a desire of healthy people. The closer you get to the end of your life, the more, in general, you hold on to it. But the taboo that reigns in families and in the medical world creates great loneliness among those who are about to die.
When did the denial of death go back to?
It started after the war, with advances in medicine and the desire to reverse death. With success, moreover, since we have gained 20 years of life expectancy since 1945. However, this all-powerful medicine has a difficult relationship with death. During my career, I almost only knew doctors for whom death was a failure.
The medical profession has a lot to learn from palliative care services: they accept that people are going to die and that it is not a failure. Rather than being obstinate, they help patients to die as well as possible, without suffering. Unfortunately, doctors are too little trained in this culture. A mandatory meeting should be instituted each year in hospitals to raise awareness among all caregivers of end-of-life support.
You were the first psychologist to intervene in a palliative care unit. How did the patients apprehend their last moments there?
They needed the truth first. At the time, there was this comedy of lies in the other services: we told people that we were going to fix them and that, 15 days later, they were going to leave and that everything would be fine. But these people felt that their bodies were weakening and that they were going to die. The speech that was given to them, in contradiction with what they felt, distressed them.
I found it remarkable, in palliative care, that the doctors and the team do not play this comedy. They had the intelligence to say what they knew and what they did not know. They acknowledged that they could no longer cure the patient, but did not give a quantified prognosis.
“How much time someone has left depends on the mystery of each person’s bodies and intimate deadlines.”
Marie de Hennezel, psychologistat franceinfo
Some are afraid of dying and say to themselves: “As long as it happens as soon as possible.” I have seen some let go inside and die quite quickly. Others need time to experience important things. There may be a renewed vitality, a relational appetite, a desire to meet people, to close the loop with them. It’s a matter of temperament and personality. From the moment everyone is in the truth, they can decide in their hearts what is going to happen.
How did relatives, immersed in this society of denial of death, find their place?
It was the dying who helped the living. They themselves addressed the question of their death. And we, in the team, did everything we could to help loved ones overcome their fear of entering the room, of being present, of holding hands, of speaking. It is really an essential time, which must be preserved, without skipping it.