Not really taboo, but passed over in silence. Just one of those things we don’t talk about. On April 2, the citizens’ convention on the end of life will submit its conclusions to Emmanuel Macron. Unless surprised, she will plead in favor of a modification of the Claeys-Leonetti law of 2016 and for the introduction of assisted suicide under conditions. To get there, hours of debate, working groups, speeches by caregivers, experts, associations and religious. And an oversight: the point of view of those who have accompanied a loved one on this journey in the form of a fatal countdown. As if their pain didn’t exist. They themselves hesitate to talk about it for fear of betraying the choice of those they loved. Or for fear of undermining progress in favor of active assistance in dying by saying “it’s not that simple”. So they are silent. However, these few months, these few weeks are not insignificant.
It can be October, June or December. For loved ones, the story often begins with a date. More or less precise. In the more or less short term. A relative, a friend tells them about Switzerland or Belgium where he chose to die, via assisted suicide in one case, euthanasia in the other. Either way, the effect is the same. In The Last Lesson, published in 2004 in which she tells how she accompanied her mother, Noëlle Châtelet speaks of a “guillotine sentence” about this “it will be October 17” pronounced by her relative. It doesn’t matter that they have spoken about it often, that she is not opposed to it on principle, the statement of the date makes the end suddenly very concrete. “It’s a bit as if someone told you before that he was going to commit suicide,” says Mathieu, who is currently going through this process with a member of his family.
Sometimes the story started earlier. At the announcement of an illness, by a very assertive choice. This is what Pascal Le Mignant experienced with Guy, his companion. In June 2021, while they are worried about Guy’s arm which keeps moving, the medical verdict falls. Guy is suffering from Charcot’s disease, this neurodegenerative disease which leads to a confinement of the body while remaining lucid. Immediately, Guy announces to Pascal that he does not want this end. “We had spoken a little about these subjects before, but especially about the refusal of therapeutic relentlessness and without thinking about it too much. When the disease appears and he tells me that he will not go all the way, I agree”, says Pascal.
Always craving a little more time
Few relatives refuse abruptly. Of course, there are sometimes moments of anger, of rejection. After all, in our Judeo-Christian societies, haven’t we been taught to preserve life at all costs? You can’t help but want to keep a husband, wife, mother or other loved one close to you a little longer. He is promised to bring homes closer, to visit him more often, to set up aid. Besides, isn’t there an ultimate medical treatment that could give him a few more months to live? To accept his choice is to recognize that the love and assistance that we can give him are not enough. Not so easy. Questions swirl around in your head. And all the more so since the disease has not yet taken its toll or that old age does not seem so unbearable that it justifies such a gesture. “What may be surprising is the dichotomy between what the person shows of his reduction and his project”, continues Mathieu.
Some accept their parent’s choice straight away, others resist for a few days, a few weeks, without always expressing it, then give in. Many keep in mind the memory of a previous bereavement, of another loved one, often a father or a mother, who died of illness in great suffering not relieved by medicine. No question of letting a new loved one experience the same thing. “A painful accompaniment generates two types of reaction: things have to be changed to improve palliative care or: neither for me nor for my loved ones, it is better to die”, admits Claire Fourcade, president of the French Society for accompaniment and palliative care, which tirelessly defends the first option. Nathalie Andrews, from the association Le Choix, kept “a sweet memory of this friend accompanied in Switzerland, unlike the death of her mother, appalling”.
Bowing to more important than yourself
Despite doubts, despite a form of selfishness in wanting life to go on as before, everyone says they gave way to something more important than themselves. “After many twists, after many constraints, I felt that my right to me, my right as a child to still want you near me went against love itself”, writes Noëlle Châtelet. Sophie Grassano, activist of the Association for the right to die with dignity, who accompanied Jeany, a friend suffering from cancer to Switzerland, completes: “The administrative problems that stressed me seemed very trivial compared to a date , to Jeany’s ability to travel to Switzerland.” Anne left Angers in August 2021 to accompany her sister Christine, 75, until April 2022: “My feelings had to come second, it was her who counted. We had to upgrade.”
During the few months or weeks preceding the deadline, joyful moments and final questions intertwine. Curious period during which we try to fully live these moments that remain. The questions multiply. How to take advantage when you know that, in a few weeks, it will no longer be possible? Should we come as often as possible or, on the contrary, keep a form of normality in the relationship? Whom should I speak to ? Should we contact this brother angry with the mother for so long to tell him? How to share it with children old enough to understand? Between telling them bluntly, “Kiss Grandma, this is the last time you will see her” and “Kiss Grandma, this may be the last time we will see her”, almost nothing, an adverb, but another world.
Even among the most convinced, questions can resurface at key moments. Thus, if Guy and Pascal had little hesitation before deciding on euthanasia in Belgium rather than follow-up in palliative care in France, the setting of the date was less obvious. Guy initially chose the loss of use of his hands as the trigger. When the time comes, he postpones the deadline, Pascal can still help him. They spend the summer with their family, by the sea. When his face is touched by illness, he tells Pascal that the time has come. “For twenty-four hours, I refused. Telling him yes, it was like pressing the button. The next day, I saw that he couldn’t take it anymore, so I called the Liège hospital”, says Pascal, who will suggest waiting for the start of the school year. In vain. Guy dies in Belgium on August 29.
Others recount the mourning prepared with the loved one, sometimes down to the smallest detail. Like a shared moment, the reminder of the years lived together. Christine, Anne’s sister, asked her one day to write down in a notebook the list of what she wanted to give. “When I reopened my notebook, I had the contact details of each other. And an ultimate mission: to give the remainder of the money to Sea Shepherd, the association for the defense of the oceans. It was good, she built her departure, left something behind, I had no heartache.” Paule, Elisabeth’s mother, chose to die in Switzerland because of excessive bone pain. She decided the date three months in advance, to say goodbye to everyone and give time to her granddaughter living abroad to come. On the other hand, in the last few days, she no longer wants to take her grandchildren on the phone – too many good memories stirred up – and asks her daughter to go out in the last thirty minutes. “We would have liked to be with her, but it was her choice”, inclines Elisabeth.
The last hours do not leave unscathed. Because Guy is of strong constitution, his heart refuses to stop, he needs a second syringe. “I had to tell him, don’t hang on my love, it’s your choice,” recalls Pascal, one of the few to talk about it. The traces are much deeper when relatives have not been informed and receive a letter announcing the death in Switzerland or Belgium of one of their parents. Guilt and doubts can also complicate the work of mourning when the reasons for the assisted suicide are, basically, considered ill-founded by the loved ones even if they have bowed to the will of the loved one. Gérald Deschietere, psychiatrist at the Saint-Luc clinic in Brussels, called upon in euthanasia cases, pleads for a systematic consultation of relatives even if Belgian law only provides for one possibility. “It’s important to put disagreements into words, as a kind of family therapy,” he notes. A path to follow in future French legislation?