Seven years after the promulgation of the “Claeys-Leonetti” lawa National Assembly assessment mission draws up the balance sheet, to feed and enlighten the current public debate on the question of the end of life. For more than two months, MEPs heard from a wide variety of players – ninety in total over the course of thirty-one hearings – often having different approaches to the subject in order to have a global vision of the law application. They note that the provisions of the law remain largely unknown to patients but also to caregivers. They also show great territorial disparities. Their work was the subject of a report adopted in public session on March 29, 2023.
Composed of fourteen articles, this law notably guarantees new rights for patients by enshrining the binding nature of advance directives, strengthening the role of the person of trust and deep and continuous sedation maintained until death (SPCJD). It also reaffirms the refusal of unreasonable obstinacy, the right to a dignified end of life and access to palliative care for all.
Insufficient access to palliative care
The parliamentarians’ first observation questions the effectiveness of access to palliative care. The mapping of palliative care is marked by territorial disparities (21 departments did not have palliative care units at the end of 2021). Many of those interviewed indicated that two thirds of patients requiring palliative care did not have access to it. The rapporteurs emphasize that it is essential to continue to massively develop this palliative care so that the rights of patients provided for by law are fully guaranteed everywhere in France. This presupposes making this sector, which is affected by the shortage of caregivers, more attractive.
A palliative culture that is struggling to spread
Health professionals are always more trained to cure than to treat. Death is often considered from the angle of therapeutic failure and palliative care is relegated to the management of death even though curative and palliative care must be carried out jointly. A strong seal persists between curative care and palliative care. Such a situation is detrimental to the quality of care for patients, who are sometimes transferred late to palliative care. It is therefore essential to raise caregivers’ awareness of palliative care and to make initial and ongoing training in palliative care mandatory, especially for doctors.
Advance directives and trusted person: little-known and imperfect mechanisms
The work of the mission shows that advance directives and the person of trust constitute progress for the rights of patients that should not be called into question, but that the application of these systems can still be improved. In particular, they must be much more widely disseminated, to patients but also to caregivers. It is also important to maintain the greatest freedom in the drafting of advance directives, while making available to everyone all the resources that can facilitate their drafting.
Very limited use of deep and continuous sedation until death (SPCJD)
The main observation that the mission was able to make is that of very rare recourse to the practice of the SPCJD. The prevalence of the latter is in fact estimated at 0.9% according to a recent study (PREVAL-S2P study). Very limited, this recourse is also variable according to the place of care. The type of structure appears to be more decisive than the specialty in explaining these disparities.
The Claeys-Leonetti law specifies that the SPCJD must be accessible to anyone who requests it and who meets the conditions, including at home. However, this practice appears difficult, if not almost impossible, to implement outside the hospital. Moreover, in practice, confusion seems to persist around the meaning of the SPCJD and the intention behind it. Some indeed denounce a form of hypocrisy around this practice. The SPCJD would thus arouse a form of reluctance among some caregivers.
• Assessment mission of the law of February 2, 2016 creating new rights for patients and people at the end of life (Claeys-Leonetti law) Press kit on the website of the National Assembly. See as well the video of the public meeting.
