Rarely has a bill concentrated so many societal and political compromises in so few pages. The executive knows it, each line of the text “relating to the support of the sick and the end of life”, presented on April 10 in the Council of Ministers and examined in the National Assembly from the 22, will be scrutinized with the greater attention. For months, the government has been consulting, organizing debates, seeking a path between the wishes expressed by a majority of citizens for an evolution of the Claeys-Leonetti law, the refusal of assisted suicide and euthanasia in the name of the primacy of life carried in particular by religious people and the requests for safeguards required by doctors. But by seeking too much for the subtle balance, he ended up letting slip a seemingly innocuous provision, but which weakens the whole structure: the possibility of asking for help from loved ones in the final phase of euthanasia.
The measure is nestled at the heart of the text: “the administration of the lethal substance is carried out by the person himself. When the person is not able to carry out it physically, the administration is carried out, at his own discretion. request, either by a voluntary person designated by them when no constraint prevents this, or by the healthcare professional present.” Clearly, if the patient does not fall into the category of assisted suicide because he is not capable of swallowing the lethal product alone, but into that of euthanasia, a relative, a friend, a member of the family or a member of an association may carry out the action which will lead to death if no caregiver is ready to assist them.
However, this option was never mentioned during the citizens’ convention which was held from December 2022 to March 2023. It then seemed obvious that, if euthanasia were to be legalized, a caregiver would carry out the gesture, as in countries having already authorized this practice. Thus, in Belgium, where euthanasia has been legal since 2002, only doctors are authorized to practice it. “It’s a guarantee of patient protection. We know that the doctor uses the right products and carries out the procedure correctly,” underlines Yves de Locht, a general practitioner in Brussels, who performs them regularly. “It is up to us to take responsibility for the act, it comes from our work as doctors not to abandon the patient,” insists Corinne Vaysse-Van Oost, palliative care practitioner in Belgium.
Medical, legal and ethical questions
So, what fly has stung the executive? Many see this as a sign of his desire not to offend the doctors. Arguing that their vocation is to care for and support their patients until the end and not to hasten their death, many are, in fact, opposed to the idea of being involved in a procedure of active aid to die. “Is the president trying to disengage doctors as much as possible? Emmanuel Macron is proposing something that goes easy on everyone,” regrets Nathalie Andrews, member of the Le Choix association, in favor of “a chosen death.” “It’s unthinkable, they are stuck by the fact that they don’t want to anger the doctors,” adds Denis Labayle, a long-time activist for active assistance in dying. On the executive side, the scope of this provision is minimized. “The idea was to open up the possibilities depending on the case,” says an Elysian advisor. “These will be extremely small cases, the exception within the exception, for people who are not able to absorb it themselves. “
This opens up a vast field of medical, legal and ethical questions to which the executive does not provide answers. Even the most convinced of assisted dying activists agree, many very concrete questions are unanswered. The text provides, for example, that “when the lethal substance is not administered, the presence of the health professional alongside the person is not obligatory”. In the absence of a doctor or nurse, will a loved one, who has never performed the procedure before and does not have medical training, be able to react to an unexpected event? “The lethal preparation has a very bad taste, let’s imagine that the person does not drink it all the way through and falls into a coma, but does not die…” questions Nathalie Andrews. Even Yves de Locht has no longer practiced euthanasia at home for several years, but always in the hospital and with a colleague to have reinforcement from hospital staff in case of difficulty.
To try to reassure, the government added, in the version of the text presented to the Council of Ministers, that the caregiver “must however be in sufficient proximity to be able to intervene in the event of difficulty”. Without removing all doubts. Nor the legal vagueness. How do you know what will happen in a room where doctors and nurses are not present? How can we prevent a couple from deciding to die together after only one of them has requested active assistance in dying? How can we ensure that the person will not change their mind at the last moment, leaving loved ones, sometimes heirs or tired of carrying the burden of an illness, facing a dilemma that some might be tempted to resolve at the cost of illegality? Not to mention the consequences that the choice to help a loved one, a mother, a brother or a sister, die can have within siblings or a family where not all members share the same beliefs. Nor even suspicions which could arise from more favorable financial arrangements for the person who helped and which would fuel jealousies. A doctor or someone outside the family has the advantage of having no interest of any kind.
What psychological follow-up?
Finally, the government project does not provide anything to prevent the possible psychological effects of an action – helping someone to die – which is new to society and whose impact is difficult to measure. “On the conscious level, human beings can accept a gesture which may be of the order of compassion, but we do not know the medium and long-term consequences on the unconscious level”, distinguishes Jean-Jacques Bonamour du Tartre , psychiatrist and former president of the French Federation of Psychiatry. Those who have already accompanied loved ones through an assisted suicide or euthanasia procedure, even without being directly involved, know that the moments afterwards are not easy. Pascal Le Mignant who, in 2022, went to Belgium with Guy, his companion suffering from Charcot’s disease, recognizes that it was easier for him to rely on a doctor. “But I would have done it without any problem for Guy, given Guy’s state,” he says. Before adding: “But, in fact, such a gesture can be traumatic for a loved one. My case was different, but it was me who called Belgium to say that we were arriving and, even if I know that it was was the best thing to do, I sometimes think about it and wonder: didn’t we go there too soon?”
Even doctors express the emotion that overcomes them when they carry out what they consider to be their duty. “It’s the last care, it’s not us who cause death, we shorten the suffering, but it’s an intense moment, the loved ones are there, in tears, they throw themselves into your arms. To manage this emotion, I walk, I sometimes go to the sea, I talk about it with my wife and with the doctor who was there with me, I do not remain alone with what I did”, underlines Yves de Locht, the Belgian general practitioner. The presence of his colleague is particularly precious: “It’s liberating to talk about it together because we experienced the same thing, we were both around the bed.”
No one today imagines leaving loved ones alone after having made such a gesture. All the actors plead at least to provide psychological follow-up. But most would like to clarify the various outstanding questions before the law comes into force to avoid spectacular or poorly defined cases weakening its first months of application. “In Belgium, the framework is very clear, easy to teach. This serious act must be well defined so that, on an ethical level, we feel comfortable,” defends Corinne Vaysse-Van Oost. Unless, during the parliamentary discussion, the government comes to abandon this “volunteer” option to move closer to the Over-Quiévrain model where only patients or doctors are authorized to administer the lethal substance.
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