Dtwo decades after the promulgation of the Kouchner law on patients’ rights and that renovating social and medico-social action, the Partage et Vie foundation chose the theme of rights and ethics for its new Estivales, in partnership with Point. A theme that is essential, not only because of this anniversary, but also – and above all – because of the Covid-19 crisis. Because the successive waves of the epidemic have had multiple repercussions on the lives of the elderly and people with disabilities, their families and loved ones, as well as their carers and the leaders of the establishments responsible for welcoming them.
“In twenty years, the many laws have been expanded to clarify things and strengthen the rights of vulnerable people”, notes Karine Lefeuvre, lawyer, vice-president of the National Consultative Ethics Committee (CCNE) and scientific advisor to the Partage et Vie foundation on issues of human rights and health democracy. “Today we have an extremely protective and fairly complete system. And yet, on the ground, these laws and their decrees are not always sufficiently known, understood and applied.
The role of social life advice in nursing homes
This is, for example, the case concerning the designation of the person of trust. Since 2002, a hospitalized patient or since 2015 the resident of an Ehpad can give the name of the person who will be likely to testify to his choices, in case he is not in a condition to express himself. A person different from the family referent who practically settles the administrative questions. “The appropriation of this measure was very heterogeneous”, regrets Karine Lefeuvre. “In some establishments, a procedure is in place to explain this possibility and help users make their choice freely. In others, this document disappears in the middle of a whole file and we do not provide enough support to the resident who must fill it out. »
The same observation can be made about the functioning of social life councils (CVS) in nursing homes. In principle, they must be asked to issue opinions and proposals, regardless of the importance of the subjects… In reality, some establishments struggle to bring them together, others do so at a minimum, while still others have seized of this tool, made it a forum and supplemented it with other forms of participation within the establishment.
“Beyond the law, the crucial issue is to seize the texts, to give them life, even to take a little freedom by adapting the meaning initially planned – while respecting their spirit – to better respond to day-to-day issues”, explains the lawyer. “For me, law and ethics form an independent and inseparable couple. And the Covid crisis has put the latter back at the center of discussions. A concrete example: a decree of 1er April 2020 on the treatment carried out on the bodies of the deceased and on the funeral rites aroused a wind of revolt on the part of professionals in the field and families. The CCNE took a position 15 days later and the decree was largely relaxed on the 30th of the same month…
The fact that this committee was called upon so often during the epidemic constitutes real progress for Karine Lefeuvre, who is well convinced that the law will no longer be able to move forward alone, at least in terms of health and protection of the most vulnerable.