Deep and Continuous Sedation until Death: What Do Caregivers Experience? Qualitative Exploratory Survey in Oncology

Aim: The recent Claeys-Leonetti law of 2016 recognizes the patient's right to deep and continuous sedation until death if the patient so requests. On a daily basis, how do health-care teams appropriate this new possibility and adapt to these specific end-of-life situations? Procedure: We conducted semi-structured interviews with six volunteer caregivers from each profession (two physicians, two nurses, and two nursing assistants) in a medical oncology and radiotherapy department. The interviews were analyzed using a thematic content analysis method, in order to report on the experiences of the care professionals with regard to the SPCJD protocols and the consequences for end-of-life care in these circumstances. Results: This exploratory survey highlights interprofessional disparities in the experience of accompanying patients on SPCJD. The heterogeneity of the representations seems to be linked to a lack of knowledge of the law, to varying acceptances, but also to different intentions according to the functions performed. The continuity of patient care is affected: the only common point observed among all the professionals concerns the difficulties described in accompanying the families. Conclusion: The Claeys-Leonetti law, whose objective is to give more rights to patients, raises ethical issues and difficulties for caregivers that have not yet been sufficiently investigated. It seems fundamental to take into account the effect of this procedure on the experience of professionals, so that the implementation of protocols is accompanied and thought out as well as possible, with the aim of limiting the potential difficulties and suffering related to the SPCJD.