2023-10-24 10:00:02
LSupport for the end of life is currently the subject of intense reflection in our country. The future presentation of a bill follows a national consultation requested by the President of the Republic which included a citizens’ convention, debates organized in the territories by regional ethical reflection spaces, a parliamentary mission to evaluate the Claeys-Leonetti law and working groups of parliamentary assemblies. The democratic challenge of such a collective exercise is to arrive at decisions supported by an informed debate. Citizen participation was useful in partly fueling the debate, mobilizing the experiences and expertise of patients, their loved ones, associations or caregivers. But it is not enough.
Knowledge from research must also be able to fully participate in informing the debate. Moreover, with this objective, the Ministry of Higher Education and Research and the Ministry of Health and Prevention created, in 2018, the National Platform for End-of-Life Research. Its aim is to contribute to the structuring, development and promotion of French research in the field of end of life and palliative care. It is a valuable institutional tool that can and should contribute to the improvement of practices and the acculturation of health professionals and citizens to end-of-life issues. Scientific research in medical, human and social sciences has not been sufficiently mobilized and must be much more mobilized following this national consultation, a prelude to the development of the law.
Indeed, if the end of life concerns us all, because it is both an intimate subject and a political subject, the understanding of its determinants must also be helped by science. Researchers who work on the end of life produce scientific data which shed light on the different situations at the end of life, restoring the complexity of the questions raised and thus helping to remove them from caricatured oppositions. They use collaborative and plural approaches involving field professionals and numerous disciplines: medical and nursing, political, legal, biological, demographic, economic, sociological, philosophical, anthropological, historical, ethical, psychological, psychiatric, etc. Their field of research is broad.
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