Seven years after being instituted by the Claeys-Leonetti law, the right of terminally ill patients to be plunged into a final coma remains unequally applied in France.
It was almost a snub to death. In 2016, Parliament adopted the Claeys-Leonetti law, carrying a flagship measure: the right for patients to be plunged into a deep and continuous coma as they approach their last breath. “We wanted to create a right not to suffer at the very end of life”then summed up the deputy LR Jean Leonetti. “There are still French people who scream in pain for hours before they die. It is unacceptable”he chanted.
Die without suffering, but how? The option retained in the law was that of a “deep and continuous sedation causing an alteration of consciousness maintained until death”. In other words, for people whose vital prognosis is committed in the short term, the possibility of receiving an injection to be asleep until death. In addition, anti-pain and a “stopping all life-sustaining treatments”including nutrition and hydration. A recipe for doctors and a promise for patients: “to sleep so as not to suffer before die”in the words of Jean Leonetti.
Seven years later, the hour of reckoning has come. At the National Assembly, an assessment mission is investigating the application of the Claeys-Leonetti law, which had also reinforced devices such as advance directives or the person of trust. On April 2, the citizens’ convention on the end of life will submit its proposals to change the current framework, which is deemed insufficient. A first observation is emerging concerning deep and continuous sedation: this practice has not kept all its promises. According to health professionals, much suffering could still be avoided, both at home and in hospital.
The forgotten home sedation
In France, more than a third of deaths take place at home or in a retirement home. The population increasingly aspires to die at home and without suffering, according to data from the National Center for Palliative and End-of-Life Care (CNSPFV). Yet, despite the possibility of a “home implementation” deep and continuous sedation, this practice remains very rare. “Nothing has been done to give general practitioners the means to make this right effective in the city”lamented the CNSPFV in 2018.
GPs had to wait until 2021 to be able to prescribe the necessary sedative, midazolam. Other barriers must still be removed to democratize sedation at home. “Just because it’s possible doesn’t mean it’s easily achievable”summarizes Régis Aubry, head of center at the Besançon University Hospital and co-author of an opinion on the end of life for the National Advisory Council on Ethics (CCNE) in 2022.
“We lack specialized mobile teams and trained and available caregivers.”
Régis Aubry, professor of medicineat franceinfo
To avoid any deviation, the establishment of deep and continuous sedation requires the favorable opinion of another doctor. Still need to add one. “There is this time of collegiality, but also a need for regular visits and support from loved ones. So many time-consuming and poorly paid activities“, notes Sarah Dauchy, the president of the CNSPFV. And as many “brakes” to sedation.
A “veil of ignorance” on the acts carried out
It is in the hospital, scene of half of the deaths in France, that the deep and continuous sedation is the most practiced. But no one can say how many patients benefit from it. “The law has not included an indicator to know it”, deplores Sarah Dauchy. As early as 2018, the General Inspectorate of Social Affairs (Igas) denounced the “veil of ignorance” surrounding death in France and alerted to the “lack of traceability of deep and continuous sedation decisions”.
Two types of services seem to master the technique better than the others. “More than half of patients who die in intensive care benefit from deep and continuous sedation”, advances Pierre-François Perrigault, head of center at the CHU of Montpellier and author of a study on the subject, in the course of publication. Faced with hopeless cases, life-sustaining treatments are frequently stopped in intensive care, to avoid any therapeutic relentlessness. Deep and continuous sedation is then necessary, preventing, for example, a patient deprived of an artificial respirator from suffocating.
Palliative care services are also used to practicing sedation, to varying degrees. They can be light and temporary, for a few hours relief, or permanent, as provided for by the 2016 law. The “deep and continuous” option remains the exception, however, according to doctor Matthieu Frasca.
“Palliative care patients who want to sleep until they die are very rare.”
Matthieu Frasca, doctor at the Bordeaux University Hospitalat franceinfo
Palliative care units receive on average, at a given time, only 3% of patients under deep and continuous sedation, advances Matthieu Frasca, author of a study currently being published. “Fortunately, the vast majority of deaths in France occur in a relieved manner, without the need to resort to sedation”, he insists.
An unknown right, poorly trained caregivers
What about elsewhere in the hospital? The flagship provision of the Claeys-Leonetti law is struggling to gain ground, for various reasons, starting with the lack of information. Only half of the population is aware of the existence of the term “deep and continuous sedation until death” and a third understands its meaning, according to a recent BVA survey for the CNSPFV. “When we consider sedation, whether deep or not, relatives very quickly accuse us of wanting to kill their relative”reports Sophie Moulias, geriatrician at the Boulogne-Billancourt University Hospital (Hauts-de-Seine).
Caregivers can also feel uncomfortable because they are poorly trained. “There is a lack of palliative culture and skills in the medical profession”, says resuscitator Pierre-François Perrigault. A statement shared by former deputy Jean Leonetti.
“Some doctors are afraid to use this method, which seems complex to them.”
Jean Leonetti, co-author of the Claeys-Leonetti lawat franceinfo
The criteria opening the way to deep and continuous sedation, such as “suffering refractory [résistant à tout traitement]” and the “short-term vital prognosis”sometimes seem nebulous, notes the Igas. “Some patients who are thought to be at the very end of life go home and live for a few more weeks”, illustrates Gary Pommier, doctor in the palliative care unit at the University Hospital of Nice. Initiating the procedure on a patient whose vital prognosis has been badly assessed risks leading to sedation that drags on for one or two weeks. An often trying wait for loved ones.
A disturbing neighborhood with euthanasia
Beyond the technical pitfalls, an ethical question continues to dampen enthusiasm: is it a form of euthanasia, feared by many caregivers? In the application texts, the boundary is clear. “Sedation is not euthanasia”, says the guide of the High Authority for Health. Six differences exist between the two, table in support.
For some professionals, deep and continuous sedation has a “boosting” effect on death. It all depends on the dosage, say others. “I believe that a well-conducted sedation does not precipitate the onset of death”cautiously advances Professor Régis Aubry, pointing to a lack of clinical work on the subject.
Another gray area questions the very relevance of deep and continuous sedation. “According to the law, this practice responds to a ‘request by the patient to avoid any suffering’recalls Régis Aubry. However, to ensure that the sleeping person no longer suffers, it would be necessary to put electrodes on him, to carry out measurements. This has never been done before, for ethical reasons in particular.”
“Does deep and continuous sedation really abolish suffering? It is assumed, but without scientific certainty.”
Régis Aubry, professor of medicineat franceinfo
At a time when the end of life is back in the debate, what fate should be reserved for deep and continuous sedation? Despite its imperfections, it remains widely perceived as an advance by health professionals. Its inclusion in law has reinforced the power of patients to control their last moments and allowed “an awareness in the medical profession” on the need to deal with suffering, believes Jean Leonetti. Its very existence is a factor of appeasement for many patients, who, without necessarily having recourse to it, see in it a promise of being relieved until the end.
It remains to allow the effective application of this right for those who wish it. “When we presented our work at the Elysée and at Matignon, we warned François Hollande and Manuel Valls that our law would be useless without a significant effort in favor of palliative care”, says, bitter, Jean Leonetti. The construction site remains colossal on this point.
His socialist colleague, Alain Claeys, also recognizes an oversight: the case “dpeople whose vital prognosis is committed in the medium term”, whose profile is not compatible with deep and continuous sedation. How to respond to these issues? A new law will be born “presumably” in the coming months, the government said. The citizens’ convention has already come out in favor of access to euthanasia or assisted suicide.