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The use of proportional palliative sedation for the relief of refractory symptoms: an international multicenter study

Project description

Ethical and legal issues in palliative sedation

The EU-funded PalliativeSedation project is investigating how to better help patients with refractory symptoms near the end of life. It focuses on the clinical, ethical, legal and moral aspects of providing deep sedation to dying patients across Europe. The project will review state-of-the-art refractory symptom management on a national level and current practices and guidelines in five international palliative care centres. Qualitative studies should enrich understanding of palliative sedation practices from the perspective of physicians, nurses and bereaved family members. The project will also conduct a moral case deliberation in 16 clinical centres across Europe to investigate clinical decision making regarding refractory symptoms and proportional palliative sedation. An online course should help clinicians, patients and families to better understand palliative sedation use for refractory symptoms.

Objective

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.

Call for proposal

H2020-SC1-BHC-2018-2020

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Sub call

H2020-SC1-2018-Single-Stage-RTD

Coordinator

STICHTING RADBOUD UNIVERSITAIR MEDISCH CENTRUM
Net EU contribution
€ 583 852,95
Address
GEERT GROOTEPLEIN 10 ZUID
6525 GA Nijmegen
Netherlands

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Region
Oost-Nederland Gelderland Arnhem/Nijmegen
Activity type
Higher or Secondary Education Establishments
Links
Total cost
€ 583 852,95

Participants (10)