Descrizione del progetto
Questioni etiche e legali nella sedazione palliativa
Il progetto PalliativeSedation, finanziato dall’UE, sta studiando come aiutare meglio i pazienti con sintomi refrattari nel fine vita. Esso si concentra sugli aspetti clinici, etici, legali e morali della fornitura di sedazione profonda ai pazienti terminali in tutta Europa. Il progetto esaminerà lo stato dell’arte della gestione dei sintomi refrattari a livello nazionale, nonché le prassi e gli orientamenti attuali in cinque centri internazionali di cure palliative. Gli studi qualitativi dovrebbero arricchire la comprensione delle prassi di sedazione palliativa dalla prospettiva di medici, infermieri e familiari in lutto. Il progetto condurrà anche una deliberazione etica in 16 centri clinici in tutta Europa per indagare il processo decisionale clinico riguardante i sintomi refrattari e la sedazione palliativa proporzionale. Un corso online dovrebbe aiutare i medici, i pazienti e le famiglie a comprendere meglio l’uso della sedazione palliativa per i sintomi refrattari.
Obiettivo
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.
Campo scientifico
Parole chiave
Programma(i)
Argomento(i)
Invito a presentare proposte
Vedi altri progetti per questo bandoBando secondario
H2020-SC1-2018-Single-Stage-RTD
Meccanismo di finanziamento
RIA - Research and Innovation actionCoordinatore
6525 GA Nijmegen
Paesi Bassi