Fonctions d'une unité de soins palliatifs dans le parcours de soins de patients atteints de SLA

ALS is an incurable neurodegenerative disease requiring a multidisciplinary approach. In 2002, the Competence Centers were created in order to organize the multidisciplanary monitoring of these complex and progressive clinical situations. In this context, collaboration with palliative care teams is desirable. Initially confined to the terminally ill phase of disease, the 2005 HAS recommendations proposed the involvement of the palliative care teams earlier in treatment, especially at time of the disclosure of the progressive complications of the disease, but also during multidisciplinary discussions around establishment of live supportive therapies (i.e ventilation, nutrition). The possibility of accessing respite services through palliative care service, to prevent exhaustion of caregivers, was also mentioned. Practically, depending on the geographics regions or from one patient to another, there is great heterogeneity of collaboration between ALS centers and palliative care service, (fixed or mobile team). Given the wide variety of practices and in order to refine the modalities of cooperation between the different teams, we conducted a single-center retrospective, quantitative study focusing on patients admitted in a regional palliative care unit USP (unite de soin palliatif correcte?). Three major functions were individualized: patient's admission for respite to relieve caregivers; ongoing evaluation and discussion of treatment orientations (or goals?) and treatment adjustment along with continuing care and support within the framework of the end of life.