Support at the end of life: patients' and caregivers' perspectives

The new law of February 2, 2016 and successive plans to develop palliative care have not prevented the issue of end-of-life support from once again being at the heart of public debate as part of the 2018 Estates General on Bioethics, held prior to the revision of the Bioethics Law. The summary report on the debates, published in June 2018, notes opposition between supporters of the status quo and advocates of new legislative developments in favor of legalizing assisted suicide or euthanasia. In addition, three legislative proposals were tabled as early as the end of 2017 and were relayed by a tribune of 156 MPs calling for the adoption "without delay" of a new law recognizing "patients at the end of life the free disposal of their bodies"(Tribune, Fin de vie : 156 députés font pression pour une nouvelle loi, Le Monde, Feb. 28, 2018). Should we legislate again? Should we take a closer look at the measures implemented by medical teams to understand the brakes and levers for better support for patients at the end of life? These questions were already asked in 2015, and are being asked again today. To answer them, it is necessary to evaluate existing end-of-life support systems, questioning their effectiveness before considering their prospects for evolution and improvement. This is why it is necessary to integrate into this research an often neglected dimension: the implementation of these provisions by healthcare professionals, ... Our general hypothesis is that the working conditions of caregivers often prevent the possibility of implementing positive law for lack of sufficient quality of work (Y. Clos) and that it is indeed by improving the quality of life at work that we will in fact lift certain brakes on the concrete implementation of the recommendations.