Question 8628 — end of life and palliative care

Summary

Mrs. Martine Froger draws the attention of the Minister of Health and Prevention to the absence of “robust data” relating to the end of life, noted by the evaluation mission of the National Assembly of the law of February 2, 2016 creating new rights in favor of the sick and people at the end of life, known as “Claeys-Leonetti”. Thus, this mission recognizes that if it was able to successfully carry out its work of qualitative evaluation of the law, “it is different with the work of quantitative evaluation of the law, for which the mission encountered difficulties that the rapporteurs wish to highlight”. After the observation of a real lack of knowledge of the exact circumstances of the end of life posed by the General Inspectorate of Social Affairs in 2018, the lack of indicators on the implementation of the “Claeys-Leonetti” law and, more generally, on the end of life in France, is now blatantly obvious. In the absence of robust data, the mission emphasizes that it was not able to precisely assess the gap between palliative care supply and needs. The data relating to advance directives also remain uncertain, while we do not know how to precisely count the deep and continuous sedations administered each year, nor even the requests for this purpose, any more than the organized collegial procedures. The published data is rare and sometimes old or comes from an unrepresentative sample. Furthermore, the data collected is silent on the journey and experience of the person at the end of life, whose needs are poorly assessed. This lack of feedback limits the ability to assess the effectiveness of the legal provisions in force. Finally, the research work is also largely missing. Despite the creation, in 2018, of a national platform for research on the end of life, aiming to contribute to the structuring, development and promotion of French research in the field of end of life and palliative care, the research work does not measure up to the importance of the issue that the end of life represents today. Therefore, she asks him to want to indicate to him the concrete measures he intends to take and within what time frame, in order to remedy this situation which seriously undermines any reasoned debate on the end of life in France.

Machine translation from French. The official text remains authoritative.

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