Palliative care bill amended in committee
This presentation aims to highlight the major evolutions of the initial text introduced by the Social Affairs Committee
The examination of the bill on accompaniment and palliative care was conducted by the Social Affairs Committee from 9th to 12th April 2025. The text adopted by the committee was published on 16th April. The modifications introduced generally concern clarification of the terms and ensure the effective implementation of the 10-year plan announced by the government in April 2024. However, also inserted in the text is the inclusion of training in “assisted dying” in the syllabus for health professionals even before the examination of the law dedicated to assistance in dying.
Training in “assisted dying” ?
Article 8 of the bill includes training in end-of-life accompaniment and the palliative care approach during medical studies, as well as in the training of health professionals and medico-social workers. However, an amendment presented by Agnès Firmin Le Bodo, an MP for the Horizons party, ex reporter of the 2024 end of life bill, and by François Gergnigon, the co-reporter of the present bill, added training in “assisted dying” whereas the term has not been defined and concerns the so-called Falorni bill on the end of life. The latter has not yet been examined in committee. In view of the opposition by several MPs, the LFI MP René Pilato stated that it is not “active” assistance in dying. According to Agnès Firmin Le Bodo, deep and continuous sedation until death comes under the “assistance in dying” category. As a result, those MPs are deliberately maintaining the confusion between the two texts which are in fact separate, thus attempting to create a continuum between palliative care and “assistance in dying” whereas the latter notion in reality covers both euthanasia and assisted suicide.
At the same time, Agnès Firmin le Bodo submitted to a vote the addition of an information session in the syllabus for primary and secondary schools, on life cycles and death, including “witness accounts by voluntary workers from “recognised secular, apolitical and non-sectarian accompaniment associations.” Several MPs called for vigilance on this type of subject which is the prime responsibility of families, all the more since the perimeter has not been clearly defined, nor has the type of associations which are so-called “recognised”.
Adjustment of the terms “accompaniment” and “palliative care”
The reporter, Annie Vidal, suggested replacing the term “palliative care and accompaniment”, introduced by the special committee during examination of the 2024 bill, by “accompaniment and palliative care law”. In her presentation of the reasons for the amendment, she explains that the term “palliative care and accompaniment” is a departure from international standards, which do not recognise the term “accompaniment medicine”, as opposed to palliative care and “palliative medicine” which have proved their efficiency and whose definition is highly consensual. For that reason, the amendment adopted reinforces the distinction between the notion of palliative care and accompaniment, without however doing away with the latter. Accompaniment, which designates an approach and not the nature of the care, is an integral part of palliative care. The dedicated term used by those in the know in France (“French society for accompaniment and palliative care”) includes the accompaniment notion. Similarly, the ten-year strategy includes the notion of accompaniment in order to reinforce the general nature of the cover.
Euthanasia and assisted suicide are considered external to the perimeter of palliative care
By specifying from the very first article that “Accompaniment and palliative care aim neither to hasten, nor to defer the occurrence of death”, the authors of the amendment co-signed by the reporter Annie Vidal used an item from the worldwide definition of palliative care, updated by the World Health Organisation (WHO) and the International Association for Palliative Care and Hospices (IAHPC) in 2019. They wished to indicate that “if the legislator decides to legalise euthanasia and assisted suicide, such practices cannot be considered as care”. That detail attempts to indicate the importance of combating unreasonable obstinacy, but also the need to exclude euthanasia and assisted suicide from the perimeter of palliative care.
Note the definition commonly accepted for care in reference texts is as follows: “Care is an action or a set of actions which a person decides or accomplishes for his/herself and for others, in order to sustain life, maintain, restore and promote health”.
The creation of “accompaniment and palliative care establishments”
The MPs wished to define more precisely such establishments, which are intermediate structures between the home and hospital. They are “residential homes for patients at their end of life whose medical condition is stabilised but who still require technical and specialist care, and for whom a return to their home cannot be considered for medical, organisational, social, psychological reasons, or by choice of the patient or their entourage. Such care homes also provide a temporary respite for carers in order to avoid their exhaustion by end-of-life accompaniment”. They are the very terms used in the report by Professor Chauvin, submitted to the government in 2022 and which acted as a basis for the elaboration of the 2024-2034 10-year strategy.
Establishment of an enforceable right to palliative care
Through article 4, the right to benefit from accompaniment and palliative care in accordance with article 1110-10 of the public health code [1] is guaranteed for any person whose state of health so requires. The patient or, if his/her condition does not allow it, their person of confidence and/or next of kin, may submit a legal claim to the administrative or judicial courts if they have been unable to obtain such care so that a suitable solution can be provided.
Ending of treatments and evaluation of unreasonable obstinacy
The experience of disputes over the ending of treatments has led to the need for clarification of the workings of the collegial procedure in which “The person of confidence and family members may participate” (…) unless explicitly excluded beforehand by the patient”. If the patient is unable to express him/herself, a mediation procedure is established for the patient’s next of kin who disapprove the decision by the medical corps to limit or terminate treatments.
Additionally, an amendment has been adopted to specify by decree the conditions for ending artificial nutrition and hydration of a patient unable to express him/herself “to avoid abuse and suffering”. The authors specified that “For many people in a complex handicap situation, artificial nutrition and hydration is common practice and constitutes a part of daily life, a care which improves their quality of life. However, since the law dated 2nd February 2016, the public health code states that “artificial nutrition and hydration constitute treatments which may be terminated” under certain conditions which were not detailed.
Finally, the MPs in the committee added a provision aimed at the elaboration by the High Authority for Health (HAS) a reference standard of good working practices “for the prevention of unreasonable obstinacy”.
Urgent need for a Programming Law
Several items have been included in the bill to ensure the effectiveness of the 10-year strategy, the sums of which must be invested and incremented each year until 2034. A multi-year programming law for accompaniment and palliative care must determine, every five years, the development path for accompaniment and palliative care availability.
That is what Alliance VITA is appealing for. As the association already stated during its audition by the social affairs committee on 1st April, this programming law and its application should be a prerequisite to any modification to the end-of-life bill.
[1] “Palliative care is active and continuous care practiced by a multi-disciplinary team in an establishment or in the home. It aims to relieve pain, appease psychic suffering, safeguard the dignity of the patient and support the patient’s entourage.”
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