The deputies begin, on Monday, in a special committee, the examination of the text on the end of life. Patients want to make their voice heard in this debate which directly concerns them.
Stéphane did not “no time to wait”. This 58-year-old sales executive has been suffering from colorectal cancer since 2019, which has spread to his liver. After undergoing 89 chemotherapy sessions and experiencing “all existing protocols”here he is on the waiting list to benefit from a new molecule, perhaps his last chance. “I can have it tomorrow or in six months or never, he realizes. I am at the end of my therapeutic journey, so, obviously, I am closely interested in the bill on the end of life.”
Like this Norman father, dozens of people affected by serious pathologies responded to the call for testimonies launched by franceinfo in April, to be heard on the sidelines of the debate which opens in the National Assembly. On Monday, May 13, deputies began examining the bill on assisted dying and supportive care. The government text, which provides for the introduction in France of aid in dying in the form of assisted suicideor even, exceptionally, euthanasia, will first be reworked within a special commission, before arriving in the hemicycle of the Palais-Bourbon on May 27.
“Give me the opportunity to choose when I will bow out”implores Stéphane, who aspires to “die with dignity, without suffering or humiliation”. This reform raises the hopes of a large majority of patients with whom Franceinfo was able to speak. Some even call on parliamentarians to broaden the scope of the text, while a minority expresses its opposition to this bill considered “fratricidal” and dangerous.
A good response to the fear of suffering?
“It is absolutely necessary that this law goes through to the end”, pleads Virginie, 62 years old. This financial assistant has been battling triple negative breast cancer for eight months, which is particularly dangerous in the event of a recurrence. “I’m afraid I’m going to die screaming in pain.”she blurted out, still marked by death “monstrous” of his father-in-law, also suffering from cancer.
“I am ready to suffer in order to heal. But if there is no more hope, what is the point of suffering in order to die?”
Virginie, breast cancer patientat franceinfo
This resident of Yvelines hopes to be able to benefit from palliative care if her condition deteriorates. “It may not be enough”however, she believes, hence her expectations for the bill. “I would be very reassured, for me and my children, if I had the guarantee of being able to leave if it becomes unbearable”, she explains. Since 2016, deep and continuous sedation maintained until death can respond to such suffering, but this practice is only possible when the vital prognosis is involved in the short term, in the very last days of life.
Criteria too restrictive for some
Laurence, 57, doesn’t want to hear about palliative care. This steward at a college in Bordeaux has suffered for years from rheumatoid arthritis, which causes her joint pain and sometimes makes her dependent on those close to her. “For now, I live with it, but I want to be able to leave with dignity if I can’t take it anymore”she explains.
“Terrified by addiction” who awaits it, the Girondine is worried about the criterion of “vital prognosis committed in the short or medium term” required to qualify for assistance in dying. “Why wait until you’ve reached the end? My illness is incurable and I don’t want to live ten years in an armchair with people forced to wipe my buttshe blurted. I experienced it with relatives, it’s degrading and it’s hell for everyone.”
In Hérault, Patrick shares the same concern. Suffering from hepatorenal polycystic disease, this 69-year-old man expects to find himself in severe kidney failure in the coming years. “When I am attached to a dialysis machine four days a week, will we consider that my vital prognosis is in jeopardy in the short or medium term? The reiterated will of the person seems to me more important than anything.”
“I would like us to take more into account the words of the patient, who must have the last word.”
Patrick, patient with kidney diseaseat franceinfo
This former cinema director fears that the bill will gradually be distorted over the course of the parliamentary discussion, under the weight of opposition, to the point of becoming “inapplicable”, according to him. “If it becomes a gas factory, I might go to Switzerland or Belgium, he warns. I have already made my arrangements, with 15,000 euros of savings that I have allocated to this.”
The delicate issue of patient consent
What will happen to patients who are no longer able to request assistance in dying? The question haunts Hélène, 65, in Essonne, who knows that the bill excludes at this stage any person unfit to “to manifest one’s will in a free and enlightened manner”. Affected by bone cancer since 2009, this retiree talks about the metastases that have spread to her skull. “My brain could be affected, which would deprive me of the ability to say what I want at the end of my life and leave me at the mercy of the decisions of the medical profession”she fears.
This former human resources manager included her final wishes in her advance directives. “Why require full awareness when taking action if you have written and renewed your wishes?”, she asks. She denounces “hypocrisy” of the bill, written and debated by “people who are not touched in their bodies and do not know what our pain and anguish are”.
“I want parliamentarians to put themselves in our shoes and show humanity.”
Hélène, bone cancer patientat franceinfo
“In this debate, we hear a lot from doctors, but who asks people at the end of their lives what they want?”engages Martine, 58 years old, who “perceives the end of the road in a more tangible way” since her breast cancer spread to the rest of her body in January. This collaborator of an elected official from the Grenoble region also judges the text “very chilly” and deplores the fact that the government has “belt and suspenders to protect caregivers”in particular by favoring assisted suicide rather than euthanasia.
The fear of being “incited to suicide”
Some patients, on the contrary, are worried about the legalization of assisted dying in France. Suffering from rheumatoid arthritis for around ten years, Vivianne, 49, fears that such a vote would result in a form of“incitement to suicide, more or less subtle”, carried out on vulnerable people. When she leaves her home in Saône-et-Loire, on crutches, “all twisted” but too much “shameful” to take her wheelchair, this mother says she already suffers from the gaze of others, sometimes perpetrators of offensive remarks.
“One day I will be completely dependentcontinues Vivianne. I’m afraid that people who take care of me will make me understand that I have become a burden and ask me why I don’t resort to assisted dying.” It therefore suggests a simple and discreet relaxation of the current framework, “case by case”to respond to certain suffering at the end of life, without resorting to a law “fratricidal” to the consequences “deleterious”.
“When you’re fighting an illness, it’s like a Tour de France cyclist on the rise: you need to be encouraged, not encouraged to stop.”illustrates Caroline, 64 years old, disabled by Friedreich’s ataxia, a neurodegenerative disease. “If we start to set criteria based on which we can ask to die, it is because we consider that life at this stage no longer has the same value”she believes.
“Once I am eligible for assisted dying, how will I feel knowing that my life has so little value in the eyes of society?”
Caroline, patient with Friedreich’s ataxiaat franceinfo
Caroline dreads feeling “obligated” to consider assisted dying for “no longer weigh on others”. “Rather than eliminating the suffering, we should eliminate the suffering, by massively developing palliative care, and better support their loved ones, so that the sick are no longer afraid of being a burden”, pleads this former French teacher. So many projects that the government has integrated into its bill, but too timidly in its eyes. In what direction will parliamentarians tilt the text, which the executive praises as delicate “balance” ? There are likely to be many adjustments between now and its final adoption, which is not expected before the end of 2025.