What About Leonetti’s Law, 20 Years after its Adoption by Unanimous Vote ?
The 20th anniversary celebration of Leonetti’s law is occurring in a rather particular context at a time when a new bill on the end of life is being debated at the French National Assembly. The text by Olivier Falorni intends to legalise assisted suicide and euthanasia. Is it to be an extension of the 2005 law or is it in blatant contradiction? According to Tugdual Derville, the Alliance VITA spokesman, who was already active on the subject in 2005, it is crystal clear.
Can you recall the context in which the Leonetti law was introduced ?
It is indeed essential to consider the text in its context. There was a real politico-mediatic tsunami, in the Humbert case, which triggered the process which led to the “Law relative to the rights of patients and the end of life”, which was promulgated on 22nd April 2005. Vincent Humbert survived a serious road traffic accident with severe neurological consequences, due to a head injury. Three years later, in 2003, he was euthanised with potassium chloride, by a doctor at the rehabilitation clinic in Berck, two days after a failed euthanasia attempt by his mother on the anniversary of the accident. On hearing that her son’s rehabilitation was finished and that he was going to be sent to a care home, she announced on television that in desperation she was going to act. The decision to act corresponded to the publication date of a book which it was claimed had been written by her son!
At the time, I investigated in detail on that dramatic situation, gathering in particular a witness statement from the young man’s physiotherapist. Hervé Messager stated, contrary to what Vincent’s mother claimed, that he did not wish to die and that anyway he was quite incapable of writing or even dictating a letter or a book. Even today, his medical records are concealed: the Wikipedia page which refers to the case claims he was “tétraplegic”. In fact, he had a frontal syndrome, which affects the brain, not the spinal cord, and as the specialists well know that changes everything. I explain all this in my book, La Bataille de l’euthanasie. Enquête sur les 7 affaires qui ont bouleversé la France – The battle for euthanasia. Investigation of the 7 cases which have profoundly upset France (Salvator, 2012).
President Chirac did not respond positively to the public calls to authorise euthanasia for Vincent Humbert. It was in that context that in the autumn of 2003, on the young man’s death, he tasked MP Jean Leonetti with a “parliamentary mission on end-of-life accompaniment”. The pressure for euthanasia was continuous at the time and even appeared irrepressible, with public opinion manipulated by what can only be described as lies and much confusion. The Leonetti mission had the great merit of considering cases objectively and of taking the time to audition many people. His report is a true type model, a serious clarification effort which contrasts with the confusion sustained by this type of debate and its exploitation based around “symbolic cases”. The mission report itself led to the bill, which was adopted by unanimous vote, which is quite exceptional.
How could such a unanimous vote be achieved?
The unanimous vote can be explained by three elements.
First of all, the quality of the consultation preparatory work and the wording of the bill itself (even if with hindsight it includes a weakness, which I shall come back to later). Then there is the fact that the submission to Parliament has the merit of providing the strength of the law to universal principles of medical deontology already implemented. Finally, one should mention – and it is an important point because a law is interpreted according to the way in which it has been debated in Parliament – that the Health Minister of the time had stated, at the formal request of those hesitating, that the law should explicitly exclude euthanasia. According to the words of Philippe Douste-Blazy, the law followed a “third path”, the French way, the palliative care path, which rejected both therapeutic obstinacy and euthanasia. In that sense, the bill being proposed by Olivier Falorni would unquestionably represent a flagrant breakaway.
What can be said in detail on the content of the bill ?
The main innovation of Leonetti ‘s law was the introduction of advance directives in addition to the naming of a person of confidence which was introduced by the 2002 law : “Any adult can record advance directives to cover the case when they may one day be unable to express their wishes.” The orchestration of the roles of advance directives and the person of confidence was explained in detail in the 2005 law.
The other important item, although obvious, is the reminder that it is contrary to medical deontology to provide (undertake or pursue) useless or disproportionate treatments. Even if this aspect of medical deontology is obvious, it is even clearer when it is included in the law. Those who promote euthanasia tried to suggest that to administer death is the only solution for avoiding therapeutic obstinacy, which the law names more precisely as: “unreasonable obstinacy”. For various reasons, some doctors could be tempted by obstinacy, at the risk of maltreating their patients, preferring to follow an escalation of useless treatments rather than telling the truth about the failure of therapeutic protocols…
The 2005 law takes the trouble to define the contours and the consequences of ending treatments, in particular when at the request of the patient and that it is life threatening. Patients may indeed refuse “any” treatment. It is a question of freedom. If such refusal is reiterated for a vital treatment, the wording specifies “Doctors must safeguard the dignity of dying patients and ensure the quality of their end of life by providing the care mentioned at article L. 1110-10 (author’s note : in other words, palliative care)”. Doctors act accordingly in all cases of discontinued treatments, whether or not such treatments are disproportionate, with in particular a statement on the collegial nature of the decision. Note that the dignity of life is in no way connected to any right to euthanasia, but rather to palliative care. Note also that any treatment may only be given with the ” Free and enlightened consent of the patient” (2002 law). The 1999 law already asserted the right of access to palliative care. The 2002 law states for example: “Every person has the right to receive care aimed at relieving pain. Pain must in all circumstances be prevented, evaluated, considered and treated. Health professionals must implement all available means to ensure a dignified life for all until death.” It should be pointed out that a quarter of a century later, there remains a vast gap between the right established in the law and its practical implementation, since half of the patients who would need palliative care still do not have access to it in 2025! That is another reason for pointing out the indecency of a legal process which dares to contradict or even to rescind laws which should simply be applied.
You mentioned however a weakness in the 2005 law…?
Yes, in the statement of motives. In a paragraph in its introduction, it was stated from the outset that nutrition and hydration are treatments. Whereas – in medical terminology – they are part of care. As are washing, dressing etc., such care is “always due” whereas a treatment may be challenged. In fact, a distinction must be made between the installation of an artificial feeding system (gastrostomy) which is a medical act, i.e. a treatment whose proportionality may be questioned; and the pursuit of nutrition once the device is in place, which comes under care.
Regarding hydration, it must be recognised that at the very end of their life, some patients, in particular those suffering from terminal cancers, should no longer be hydrated, because the very hydration causes “congestion” which causes discomfort. It is one thing to abstain in effect from “care” which it no longer is, because it no longer provides care, and quite another to end it (nutrition or hydration) to cause death…
That is the weakness which led to the situation of the Lambert case, which one hopes will remain exceptional. The patient, who was not at his end of life, was deliberately deprived of nutrition and hydration, which were claimed to be treatments which had become disproportionate. The two criteria for euthanasia are the intention and the result: death. It was therefore a euthanasia. Fortunately, the High Authority for Health (HAS) recalled precisely in a memorandum in 2018, that the criterion of intention distinguishes clearly euthanasia from deep and continuous sedation until death, which was legalised by the 2016 law. As confirmed by the evaluation mission of the law, such continuous sedation remains an exceptional and rare practice, compared with the preferred reversible sedation which gives the patient the best chance of remaining conscious and expressing his/her freedom through relations.
Summing up: if one considers hydration and nutrition as treatments (which can be questioned) rather than care (which is always due when necessary for life), there is a danger of encouraging euthanasia protocols by combining a deep and continuous sedation with an ending of nutrition and hydration, which ending causes death in the short term.
We therefore support the 2005 law – providing that it is not incorrectly interpreted as euthanasia – on the basis of the stated intention by those who adopted it (minister and MPs) to oppose therapeutic obstinacy through disproportionate treatments and euthanasia.
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