Preserving patient autonomy: the role of physicians in adopting advance directives in oncology

Scientific background

Legal, sociological and psychological study of the application in oncology of the part of the Claeys-Léonetti law (2016) concerning the possibility for French people to draw up their advance directives (AD). This side of the law aims to promote patient autonomy by placing them at the heart of the decision-making process, whether or not they are able to express their wishes. ADs are used by doctors in all cases where a patient is unable to give his or her opinion orally on a treatment or life-sustaining decision. They are binding on the physician.

Although French society is very keen to promote patient autonomy, we note that a very small percentage of patients treated in oncology have or will write their ADs, and this regardless of their age or social status. This is detrimental to the respect of their autonomy, because in oncology, it is possible that an unanticipated situation requires a decision to be taken while the patient is unconscious (post-operative events following major carcinological surgery; neurological or cardiac damage, etc.). In an unconscious situation, the patient can only assert his or her choice of life and acceptance or refusal of treatment if he or she has first drawn up his or her advance directives, and if these are clear enough to be followed. It is the responsibility of doctors to talk about the end of life and to help patients draw up their ADs (time during the consultation, sound advice...).

A preliminary survey carried out in 2020-21 showed that over 80% of caregivers acknowledge that they never raise the issue of ADs with their patients. They report that they still find it difficult to discuss possible treatment failure and the end of life with them.

Project objectives and brief description of the methods used to achieve them

This project aims to identify what training caregivers need in order to mobilize them to promote the writing of ADs. We have identified i) a need for clarification of the legal text (purpose, content and legal obligations); ii) a need to define the information that must be included in ADs in order to be usable by physicians (oncologists, surgeons and anesthesiologists-resuscitators) in the event of an urgent decision for unconscious patients. Iii) the need to offer caregivers the keys to adequate literacy in order to evoke potential care pathway pitfalls and "end of life".

Training must also prepare caregivers for potential changes in the law towards an ever more controlled end of life.

The project aims to define this training:

• Completion of a study of the current legal framework to decipher its spirit, objectives and limitations and analysis of AD laws in 4 other European countries that have or have not legalized assisted suicide or euthanasia and assessment of caregivers' perceptions of their application.
• Conducting a survey (epidemiological and sociological analysis) of oncologists and anesthesiologists aimed at identifying i) the interests for physicians and their practices in benefiting from ADs during difficult decision-making and ii) the type of information that absolutely must be included in ADs in order to be able to take patients' wishes into account.
• A semi-structured interview survey (psychology and sociology) with patients who have already written their ADs at the IUCT-Oncopole aimed at identifying what prompted them to do so (moments of care and attitudes of caregivers).
• Health psychology research to identify patients' expectations of ADs.

Expected results

The overall objective of the project is praxeological and aims to set up training for doctors in the field of oncology so that they become players in the promotion of ADs. It must determine the elements to be incorporated into the training. The next stage of the project will be to set up and evaluate the training, with the main aim of increasing the percentage of patients who write up their ADs, and ensuring that these are better taken into account in medical decisions, thereby ensuring greater peace of mind for all concerned. The aim is to improve the quality of discussions between patients and carers, to anticipate situations where the patient may move from a curative to a palliative project, and to take better account of patients' end-of-life wishes. On this last aspect, the aim is to move towards greater trust and closeness in the doctor-patient relationship.

Under the direction of Bettina COUDERC and Florence TABOULET.

Link to theses.fr: https://theses.fr/s362010