Finding your way, love, a meaningful job. When you are young, there is no shortage of existential subjects. And a priori, the end of life is not at the heart of the concerns of those under 30 years old. However, two out of three young people have already raised the issue with their loved ones, whether about their parents (69%) or for themselves (63%). This is what emerges from an exclusive OpinionWay* survey for 20 minutes carried out with its #MoiJeune community, when the citizens’ convention on the end of life was launched on Friday.
Between a visceral attachment to freedom of choice and a vague knowledge of previous laws on the subject, 18-30 year olds are massively pleading for respect for everyone’s freedom to choose the conditions of their end of life.
Little known advance directives
Made up of 150 citizens drawn by lot, the citizens’ convention will debate a crucial question: “Is the end-of-life support framework adapted to the different situations encountered or should any changes be introduced?” A collective reflection, therefore, on the need to change or not the legislation.
The last text voted on this subject dates back to 2016, it is the Claeys-Leonetti law. “It has made it possible to respond to the demand to be able to die with dignity, by opening up new rights to people who are sick or at the end of life: the possibility of writing advance directives, the designation of a person of trust, and the possibility to benefit from deep and continuous sedation until death under certain conditions”, indicates to 20 minutes Alain Claeys, co-author of the law and co-rapporteur of the opinion of the National Consultative Ethics Committee (CCNE) on the end of life published last September.
Problem: more than half of young people (56%) do not know this text at all, and less than 1 in 5 (19%) really know what it is about. Thus, 36% of 18-30 year olds have never heard of advance directives, according to our survey. “It’s not surprising: there is a lack of knowledge of this law”, observes Alain Claeys.
An obligatory expression of one’s wishes?
However, “advance directives are extremely important,” he insists. They allow any adult person to express their wishes: to be transferred to intensive care if the state of health allows it, to undergo surgery, or, under conditions, to stop the treatments in progress and to be relieved of their suffering, even if this results in death. And these written directives are binding on doctors”.
A decisive aspect, to the point that nearly half of the 18-30 year olds questioned (46%) believe that they should be made compulsory. How to explain it? “This refers to the way each of us manages our fears related to death and seeks control, reassurance, analyzes Robert Zuili, clinical psychologist expert in emotions. We need to protect ourselves against the threat of death, which invites us to anticipate”.
Alain Claeys thinks however that “it would be complicated to match them with a binding nature. I hear this aspiration of young people, but it is more a process of conviction”. Especially since “it does not suit everyone: we are not all driven by the same need for control”, adds Robert Zuili. Moreover, more than one young person in four (27%) is opposed to this idea. “There is still educational work to be done, to make it known that they can be modified at any time”, recalls the CCNE member.
An attachment to the freedom to choose
The debates of the Convention should address the opening in France of assisted suicide, to which 83% of 18-30 year olds questioned are in favor. And if it were introduced, half of young people (49%) believe that its financial support should be provided by both health insurance, the patient and mutual insurance companies. “These figures reveal an increased need for personal autonomy among young people,” notes Alain Claeys.
But what are the differences between deep sedation, assisted suicide and euthanasia? “Deep sedation applies when the vital prognosis is engaged in the short term, and in the event of refractory pain, he recalls. The patient is asleep and his treatments are stopped. But the demand that is emerging is that of active assistance in dying, when the vital prognosis is not engaged in the short term”. Like people suffering from serious and incurable illnesses such as Charcot’s disease, some of whom choose to resort to assisted suicide in Belgium, where the law authorizes it. “CCNE considers that assisted suicide can be envisaged when the vital prognosis is committed in the medium term, under strictly defined conditions”, specifies Alain Claeys. In this case, the patient could be prescribed a lethal product to take himself. This is different from euthanasia, which assumes that the doctor administers the lethal product to the patient, unable to take it alone.
What is certain is that the forthcoming debate reflects an attachment to the freedom to choose. “Death confronts us with our deepest fears, and some are more afraid of suffering than of dying,” explains Robert Zuili. By deciding on his death, we regain control. A reassuring control when dying constitutes a relief, a means of ending suffering. On the other hand, it can be more difficult when it comes to the decision of a loved one. You have to find the balance between emotion and reason, between the desire to keep those you love the longest with you, the fear of feeling abandoned and the desire to respect their will.
A popular framework, but less confidence in the result
Until March, the members of this convention will debate and make proposals to change the legislation. A system approved by 80% of young people. But after the citizens’ convention on the climate, whose members judged that the government had not taken strong enough decisions to reduce greenhouse gas emissions, 6 out of 10 young people think that this new version does not will not lead to a relevant result.
“By going through a citizens’ convention, the freedom granted is total, it is the trust that is relative, notes Robert Zuili. The only way to restore it is to put it to the test. It is up to the government that this consultation translates into results allowing it to project itself into a better future”.
For Alain Claeys, “the choice of a citizens’ convention on the end of life is a very good thing. However, it is necessary to be very clear about the chosen framework: these debates are used to collect the proposals of the citizens. It will then be up to the legislator and the government to draw from these proposals to change the law. In the meantime, the CCNE will be there to enlighten citizens, caregivers, the legislator and the executive”.