Description du projet
Questions éthiques et juridiques relatives à la sédation palliative
Le projet PalliativeSedation, financé par l’UE, étudie les moyens de mieux aider les patients présentant des symptômes réfractaires en fin de vie. Il se concentre sur les aspects cliniques, éthiques, juridiques et moraux de la sédation profonde des patients mourants à l’échelle européenne. Le projet passera en revue la gestion de pointe des symptômes réfractaires au niveau national ainsi que les pratiques et directives actuelles dans cinq centres internationaux de soins palliatifs. Des études qualitatives devraient enrichir la compréhension des pratiques de sédation palliative du point de vue des médecins, des infirmières et des membres de la famille du mourant. Le projet conduira également une délibération sur plusieurs cas moraux dans 16 centres cliniques à travers l’Europe afin d’étudier la prise de décision clinique concernant les symptômes réfractaires et la sédation palliative proportionnelle. Un cours en ligne devrait aider les cliniciens, les patients et les familles à mieux comprendre l’utilisation de la sédation palliative pour les symptômes réfractaires.
Objectif
Due to the rise in cancer and multiple chronic disease, the number of patients with refractory symptoms, ie severe symptoms where conventional treatment options fail, is likely to increase. In such cases palliative sedation (PS) can be indicated which involves the intentional lowering of consciousness at the end of life. However PS is too often restricted to continuous deep sedation and confused with hastening of death. This proposal offers a modified concept, namely proportional PS, with titration of sedatives up to the point of symptom control to improve patient comfort. Firstly, the project will offer a review about state-of-the-art refractory symptom management and a country survey. Secondly, an observational multicenter study will be performed in five countries to study the effect of proportional PS at patient comfort and symptom relief. Thirdly, a multiple case study of 50 cases will investigate caregivers and family experiences. Fourthly, moral case deliberation will be studied as a tool to improve multidisciplinary decision making for the treatment of refractory symptoms/PS in 16 clinical centers in 8 countries, including the effect on caregiver emotional distress. Fifthly, a Cost Consequence Analysis will be provided to feed a policy workshop and recommendations for the further development of palliative sedation in Europe. Sixthly, a revision of the 2009 EAPC framework for PS will be undertaken, using a Delphi procedure. Finally, a free online education programme will be delivered together with an abook and a closing congress and webinar to support dissemination. The project consortium consists of experts in the field of palliative care and PS from 8 North-Western, Southern, and Central-Eastern European countries. Renowned advisory board members are involved among which the European Cancer Patient Coalition to foster the patient perspective. A dedicated European taksforce for PS is foreseen as a follow up after the project's finalization.
Champ scientifique
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Régime de financement
RIA - Research and Innovation actionCoordinateur
6525 GA Nijmegen
Pays-Bas