2023-07-20 16:05:46
While a bill on the end of life must be presented by the government at the end of September, France Assos Santé is today submitting its report to Minister Agnès Firmin Le Bodo. This document highlights the lessons learned by the member associations of France Assos Santé and thousands of user representatives. For France Assos Santé, an evolution of the end-of-life regulatory framework can only be done in consultation with the users themselves and for them.
A desired change in the regulatory framework and end-of-life support
Yes, the Claeys-Leonetti law and the rights of sick people are still too little known and difficult to mobilize in practice, yes difficulties of access to palliative care persist, and France Assos Santé can only call for the implementation of an ambitious policy to strengthen the rights of sick people and make access to palliative care effective for all. The fact remains that situations, well identified, for which the current regulatory framework does not provide a response, exist : it is in particular the situation of people suffering from serious and incurable illnesses whose sufferings we fail to relieve; it is also the situation of sick people who sometimes never stop dying following stopping the treatment that kept them alive. The argument that these situations would be too minor to justify a legislative change is not acceptable to France Assos Santé, as explained by Gérard Raymond, President: “the law must allow all sick people, whatever their pathology and end-of-life course, to benefit from end-of-life conditions that respect their wishes, and to see their suffering taken into account and relieved. »
Active assistance in dying must be a care
The government has announced its desire to open up a new right to benefit from active assistance in dying. For France Assos Santé, this development must be centered on the expectations and needs sick people and their relatives, both in terms of access, and in its implementation and monitoring.
For this, we ask:
- That active assistance in dying be considered as an act of care, organized, assisted and supported by our health system, with medical support throughout the process, from the patient’s request to the administration of the lethal product, to guarantee that it runs smoothly and not leave the patient and his family alone at the last stage of the care process.
- That the practical terms of active assistance in dying, if adopted, allow all people who wish to do so, and who meet the conditions, to have effective access to this right, including people who do not have the capacity to self-administer a lethal product.
“The challenge is to know what model of end-of-life support we want, and for France Assos Santé, the answer is clear: we want a model of proximity and assistance by the health system, where medicine is committed to the end. This principle of non-abandonment of the sick person and their loved ones, of support and management of suffering, which is at the heart of palliative care management, will also have to be at the heart of active assistance in dying care if tomorrow a law were to authorize them. » summarizes Gérard Raymond
End of life: not without the users!
It is imperative :
- That the desired developments concerning the rights of people at the end of life, but also the responses to their needs and those of their loved ones, are built with the representatives of the users.
- That the associations representing users take their full place in the development of the future bill alongside health professionals. It is up to the first concerned to assess the relevance of the changes envisaged with regard to their experience: the end of life is also a subject of democracy in health. To meet the needs and expectations of patients, France Assos Santé asks to be involved in the development of this bill and its concrete implementation methods.
“Under cover of the holding of a Citizens’ Convention, discussions on the end of life have since taken place in a very medical reduced circle. However, the end of life is not only the end of a course of care, it is also and above all the end of a life course and it is harmful for the first concerned that the debate is lost today in medical and legislative technical considerations, whereas it should focus on the needs and expectations of the people concerned. » concludes Gérard Raymond.
Rights of sick people and end-of-life support, What health associations say
of the experience of patients and their relatives, inventory and recommendations, France Asso Santé, April-June 2023 – Download the Report
1690263982
#life #hear #voice #users
