End of life: words to better understand the debate

“With this text, we look death in the face. » In an interview given to Libération and La Croix, Emmanuel Macron announced, Sunday March 10, that a bill opening “assisted death” under “strict conditions” would be presented in April to the Council of Ministers, with a view to of a first reading from May 27 in the National Assembly. While the text is not known in detail, the subject is already sensitive. The Head of State assures him: “there will be opposition”, even “violent attacks”.

Currently, end of life in France is governed by the Claeys-Léonetti law, adopted in 2016, which provides in particular that incurable patients can benefit from “deep and continuous sedation until death”.

Euthanasia, assisted suicide, assisted suicide, active assistance in dying or deep and continuous sedation until death… Le Monde takes stock of the terms and concepts relating to the end of life.

According to the definition adopted by the National Consultative Ethics Committee (CCNE), in a 2013 opinion, euthanasia is an “act intended to deliberately end the life of a person suffering from a serious and serious illness. incurable, at her request, in order to put an end to a situation that she considers unbearable.” For Emmanuel Macron, “euthanasia means the act of ending someone’s life, with or even without their consent, which is obviously not the case” in the bill, he assured. in his interview with Libération and La Croix.

In Belgium, euthanasia – during which the doctor injects the lethal product – has been authorized since May 28, 2002. According to the text, the request must be “voluntary, thoughtful and repeated” and “without external pressure”. In 2021, this country recorded 2,700 euthanasias, or 2.4% of the total number of deaths.

The Netherlands has regulated euthanasia since April 1, 2002. The law provides that the doctor and an independent expert must establish that the patient is enduring unbearable suffering with no hope of improvement.

Unlike euthanasia, in the context of assisted suicide, it is the person themselves who performs the fatal act, and not a third party. Assisted suicide “consists of providing the means to a person to commit suicide themselves (…) by absorbing a lethal product which has previously been delivered to them”, defines the CCNE.

Assisted suicide has been authorized in Switzerland since 1937, but euthanasia is not legal there. The person does not necessarily have to be terminally ill, but must provide proof of their capacity for discernment.

Austria legalized assisted suicide in December 2021, before the law came into force on January 1, 2022.

Italy, for its part, decriminalized it in 2019 for fully conscious patients “kept alive by treatments (…) and suffering from an irreversible pathology, a source of physical and psychological suffering that they consider intolerable”.

In common parlance, assisted suicide is often referred to as “assisted suicide.” However, it denotes a different situation, particularly in the eyes of the CCNE. Strictly speaking, assisted suicide refers to the situation of a person who wants to commit suicide but who is not physically capable and requires the action of a third party. Assisted suicide “mobilizes a third party more closely than assisted suicide,” notes the committee, but “the difference is tenuous with the notion of euthanasia.”

The CCNE, however, points to a “real difference” between assisted suicide and euthanasia: “The will of the person who wants to die and who decides to do so, but who is unable to kill themselves, is supposedly primary and clearly affirmed. She asks a third party (…) to do what she cannot accomplish by herself,” the opinion states. Euthanasia “concerns [therefore] people who do not wish to commit suicide, even if it is with assistance.”

“Certain people, in fact, can express both the desire to die and their refusal, or their psychological impossibility to kill themselves by committing suicide – and this outside of any impediment linked to illness –, or their preference for a doctor to end their existence, at their request, rather than doing it themselves,” details the same opinion.

Emmanuel Macron defines assisted suicide as a “free and unconditional choice of a person to dispose of their life”, not specifying who performs the last gesture. The Head of State excludes, like euthanasia, this term from the future bill.

Euthanasia and assisted suicide can be considered as variations of the notion of “active assistance in dying”, the legalization of which has already been deemed possible in France by the CCNE in September 2022. The majority of members of the citizens’ convention on end of life, whose final report was submitted in April 2023, also spoke out in favor of the legalization of both assisted suicide and euthanasia. “The term that we retained [in the bill] is that of “assisted dying”, because it is simple and humane,” explained Emmanuel Macron.

In Luxembourg, active assistance in dying leaving the choice between euthanasia and assisted suicide has been legal since 2009. For a request to be legal, the patient must be conscious, not have suffered external pressure and be ” in a dead-end medical situation, with no prospect of improvement.”

Spain has also authorized both routes since March 2021. Spanish law provides that any person with “a serious and incurable illness” or “chronic” pain placing them in a situation of incapacity” can request help from the medical profession to die, and thus avoid “intolerable suffering”.

The Claeys-Léonetti law, currently in force in France, allows “deep and continuous sedation until death” for terminally ill patients in very great pain, whose lives are threatened “in the short term”. People are put to sleep permanently by the injection of midazolam, a powerful, fast-acting substance.

At the same time, treatments are stopped when “they appear useless, disproportionate or when they have no other effect than the sole artificial maintenance of life”, according to the law. Hydration and nutrition are also withheld, and painkillers are administered. According to specialists, death occurs around a week. It is due to the failure of organs, which stop functioning after stopping treatment. Due to kidney failure, potassium builds up in the blood and eventually causes the heart to stop.

The healthcare team must accompany the patient until the end, providing palliative care, in particular toilet care, touch-massage, mouth (moistened compresses against dryness, etc.) or eyes (drops ).

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