The debate surrounding the legislative framework for the end of life has resumed. In the context of the upheld positions or witness accounts, a degree of confusion is becoming apparent between the meaning of sedation and the practice of euthanasia. This confusion may stem from a lack of knowledge of the legal framework and of the personal situation of the patients. It is possible that the wish to legalise euthanasia is tending to obscure an important distinction. In order to avoid confusion or misinterpretations, it is important to analyse the legal framework and current practices.
Palliative sedation: reversible or deep, two practices which are quite distinct
The vocabulary employed by various militants and certain media, combined with short-cuts, can indeed lead to confusion over the meaning of the words and especially, regarding the reality of medical practices at the end of life. The law dated 2nd February 2016 which created “new rights for the sick and for those at their end of life”, the so-called Claeys-Leonetti law, introduced deep and continuous sedation maintained until death (SPCJD), which is distinct from” proportionate” sedation.
These sedative practices, i.e. which put the patient to sleep, are for palliative intent (appeasement of unmanageable suffering) at the end of life, during an “advanced or terminal phase”. In its recommendations issued subsequent to the 2016 law, the High Authority for Health (HAS) makes the following distinction:
- Proportionate sedation according to the intensity of symptoms allows the patient to retain a relational life. It can be “temporary, intermittent, and is potentially reversible”. The sedation is dosed to enable patients to sleep for a few hours, and still retain some periods of wakefulness, for example to see their family members. The aim is to relieve suffering in order to be able to enjoy periods of relief between two sleeps.
- Deep and continuoussedation maintained until death is characterised by the suspension of conscience of the patient which is maintained until death. This long and complex term is important because the practice is governed by several essential markers. It is deep because it must ensure total loss of conscience; it is also continuous until death in order not to awaken the patient to ask him/her to reiterate his/her choice; finally it includes an analgesic aspect in order to relieve pain.
Although reversible sedation is preferred whenever possible, deep and continuous sedation is an important tool for use in certain precise circumstances.
It may be exercised at the initiative of the doctor in the context of a collegial decision, when the patient is unable to express his/her wish (unless the patient has previously asserted not wishing SPCMD through advance directives), and in cases where the refusal of unreasonable obstinacy leads to the curtailing of certain life-supporting treatments.
It may be requested by the patient in the following two cases:
- If life expectancy is threatened in the short term and that it involves suffering which is resistant to treatments;
- Or if the decision to end a treatment threatens life expectancy in the short term and is liable to result in unbearable suffering.
Deep and continuous sedation maintained until death is therefore not intended to be reversible. Since it occurs during a phase when death is close (life expectancy threatened in the short term, i.e. a few hours or days maximum), the doses may be larger, to keep the patient asleep with no awakening until death.
Deep and continuous sedation is a highly controlled practice
Deep and continuous sedation maintained until death differs from euthanasia through several criteria:
- First of all, concerning the intention: the intention of the medical team should not be to comply with the patient’s request to die, but rather to relieve suffering which is resistant to treatment.
- Next comes the means and the procedure: the medicine used is a sedative which deeply affects conscience (tranquillisers, and in some cases opioid morphine) and not a lethal product.
In the case of deep and continuous sedation, as indicated by professor emeritus Dr Jonquet, a specialist in intensive care-resuscitation, death is primarily a consequence of the disease, since the patient is “a few hours or days” from his/her end of life.
Although such sedation is liable to lower the breathing rate and accelerate death, that is not the objective but is in fact a side-effect: “the relief of pain combined with the possible acceleration of death but which is not as such the objective. It can therefore be accepted for a patient who, in any case is going to die and for whom there is no other means of relieving his/her suffering.” Death however comes at a moment which cannot be predicted, as opposed to euthanasia where death is provoked rapidly by the administration of a lethal dose.
In the words of Jean Leonetti, who presented the 2016 law together with Alain Claeys, the intention is “to sleep before dying in order not to suffer”. This palliative intention is an essential criterion for the distinction between an act of euthanasia and sedation, an aim which refers to the intention of the medical team. In this precise context, deep and continuous sedation until death illustrates the “French path” on the subject of the end of life, which treads the narrow path between the refusal of unreasonable obstinacy and the refusal of an administered death.
How to understand the recent information on the death of a patient suffering from LAS ?
Suffering from lateral amyotrophic sclerosis, Loïc Résibois had been campaigning for several months in favour of legalising euthanasia and assisted suicide, which among others he was hoping for himself. Not however to the extent of travelling to Belgium or Switzerland, where such practices are authorised: He had made the choice, he said, of remaining in France by “militancy“, in order to support his cause. As a member of an association militating for that cause, he claimed that he wished to put an end to his days and thus avoid sedation, which in his view would be tantamount to suffering for up to several weeks.
He finally succumbed to the evolution of his neuro-degenerative disease, following a deep and continuous sedation maintained until death.
His final living moments were given media coverage. On the social networks, which he contributed to on a daily basis, he posted a final message to all his followers, explaining that he was to receive sedation the next day, “the only solution permitted by law today”. His statements could suggest that he took the decision of the relatively precise moment of his death – and the many articles quoting his words maintain that confusion: “I have chosen, said Loïc Résibois, in particular by militancy, to die in France, at the place which is dearest to me, on Île de Ré”.
The semantic employed by the various articles relating the death of Loïc Résibois, as well as the statements by family members, mention the rendezvous taken, but fail to describe the true state of the patient. On reading certain articles, one could almost be led to believe that he died by appointment, as if he had benefited from euthanasia. However, according to Dr. Claire Fourcade the president of SFAP, “Purely on the basis of the information issued, the legal framework was indeed fully complied with.” In fact, the patient’s condition had been deteriorating for several weeks, according to the statement broadcast by FranceTVinfo.
A practice improperly understood by both patients and medical staff
Because the media often make use of imprecise vocabulary, there is a risk of confusion between sedation and euthanasia, which in certain patients generates a fear of the treatments which they might receive against their consent. In order to counter any risk of a drift towards euthanasia during the application of deep sedation, the HAS published its recommendations for good practices on 15th March 2018.
Conducted over several months up to the end of March 2023, the parliamentary evaluation commission for the Claeys-Leonetti law aimed at preparing a statement on the application of the end-of-life legislation. One of the observations in the information report is that deep and continuous sedation is not always fully understood on the wards, and that moreover, it is difficult to track:
“The work by the commission was unable to obtain consolidated data on the number of deep sedations conducted each year since the adoption of the Claeys-Leonetti law. As confirmed by the CNSPFV (national centre for palliative care and the end of life), no specific coding or systematic tracking system exists for deep sedations in the context of the information system medicalisation programme (PMSI). The codes available do not allow for individualisation of the type of sedation undertaken or to differentiate between proportionate sedations and deep and continuous sedations.”.
The problem with this sedation, is not that it is not enough, but in fact that it is inadequately known and poorly applied by medical staff. As admitted by the reporters, the very precious measures provided by the Claeys-Leonetti law remain largely unknown to patients but also to medical staff. That does not prevent Monsieur Falorni, the MP who presided over the evaluation commission, to militate firmly for a change in the current law… whereas it is evident, that it is largely unknown and unequally applied throughout the nation.
In the continuing debate on the end of life, the avoidance of confusions, the understanding of the current measures within the law would ensure better awareness by the general public. Beyond the precise subject of sedation, the urgency is rather to guarantee access to palliative care for all those who need it!
