On 30th January 2023, several Alliance VITA representatives were auditioned by the parliamentary evaluation mission for the French National Assembly on the Claeys-Leonetti law.
This audition was attended by Tugdual Derville, the Alliance VITA spokesman, and Doctor Olivier Trédan, Head of an oncology medical department in an oncology centre in Lyon and medical advisor to Alliance VITA. They took part in a round table alongside Jean-Marie Le Méné and Lucie Pacherie, respectively the President and lawyer for the Jérôme Lejeune Foundation.
On the basis of the experience of carers who are members of the Alliance VITA network and that of its SOS Fin de Vie (End of life) and Thadéo help lines, the speakers began by outlining the general policy defended by Alliance VITA which rejects both therapeutic obstinacy and euthanasia as two red lines not be crossed.
Speaking as an oncologist, Doctor Olivier Trédan provided a testimony on the benefits of advance directives which “enrich the discussions between carers and patients”. Nevertheless, they must not be granted full authority and it is important to establish a “therapeutic alliance” between doctors and their patients, based on mutual trust.
Deep and continuous sedation until death may be necessary in some extreme cases but it is preferable to choose a “proportional sedation”, which is reversible, in order to allow the patient to continue to interact with family members. Indeed, the vast majority of end-of-life situations mainly require the comfort and calming presence of close family members.
Over the last seven years, Doctor Trédan has noted major improvements in end-of-life accompaniment: development of palliative care teams, integration of living areas within hospitals, creation of relief structures for helpers and their families. The 5th national development plan for palliative care is still in progress.
Tugdual Derville highlighted three possible deviations of the current law:
- The risk of masking euthanasia by a biased use of deep and continuous sedation, in the absence of the criterion of intention in the 2016 law but also in violation of the precious references specified by the HAS (High authority for health)
- The risk of loss of trust between carers, patients and their families in the event of excessively rigid application of advance directives. They must remain updatable and non-opposable in order to favour the therapeutic alliance with the patient or the patient’s person of confidence, without especially leading to obviously inappropriate treatments.
- The general risk of making this law a stage law (rather than a barrier law) by challenging the “prohibition to kill”.
On this last point, Tugdual Derville warned against the wood of the claimed “assistance to die” hiding the forest, in particular all the questions which appear every day when having to accompany a person during their end of life. The priority should be for better care for those who are both aged and isolated, threatened with “social death”. Moreover, the current debate, by challenging the prohibition to kill, weakens in particular those suffering from illnesses considered as “eligible” for euthanasia or assisted suicide (such as for example Charcot’s disease or ALS), as well as those suffering mentally, as shown by the messages received by the SOS fin de vie (end of life) help line. In the event of serious illness, it is the difficult social circumstances rather than the therapeutic dead ends which lead to requests for euthanasia. The examples from abroad show that, “once the lock is breached, nothing can stop the slippery slope” and the practice of sedation becomes confusing and ambiguous.
In conclusion, the current debate on the end of life leads Alliance VITA to
- Alert on the risk of damaging the relationship of trust between carers and patients
- Reaffirm that the prevention of suicide can suffer no exceptions. The exclusion of certain categories of patients would constitute discrimination.
