About the project
Symptoms like pain, delirium, and dyspnea are often present in patients nearing death and can cause a lot of distress. In some cases these symptoms become refractory, which means that treatment options are exhausted because they fail, the results are not available in due time, or the risk-benefit ratio is no longer acceptable to the patient. In such cases, palliative sedation can be considered as a last resort option.
It is an important objective of this project to provide a revision and update of the EAPC framework for palliative sedation after thorough multicentre observational research in a European context. This research will focus on improved ways of assessing and managing refractory symptoms and the adequate use of palliative sedation in this context, taking into account differences across Europe in both clinical and ethical aspects.
Main aims
This five-year project will perform a clinical study into proportional palliative sedation in five European palliative care centres, with patient comfort as primary outcome measure. In addition, this project will study the decision making process during and after the assessment of refractory symptoms and will introduce a novel way to facilitate and support the medical and ethical discussion using the dilemma method. This is followed by a cost consequence analysis with a policy workshop with national palliative care associations.
The project’s impact will be increased by a revision of the current EAPC framework for palliative sedation, based on experts in the field. To support dissemination and communication, the project will develop a freely available online education programme and an ebook.
Project goals
- To evidence and investigate the practice of proportional palliative sedation using:
- An observational clinical study
- a multiple case study
- To investigate the use of moral case deliberation for palliative sedation
- To revise the 2009 EAPC recommended framework for palliative sedation
- To increase public and professional understanding of palliative sedation by delivery of: an online education programme; policy recommendations about costs and effects; an ebook with best practice examples and patient summary of framework; a congress/webinar for professionals
Project Membership
Project Centres
- Radboud University Medical Centre,
the Netherlands - University Hospital Bonn,
Germany - KU Leuven,
Belgium - Hospice Casa Sperantei,
Romania - University of Navarra,
Spain - La Maddalena Cancer Centre,
Italy - University of Pecs,
Hungary - European Association for Palliative Care (EAPC),
Belgium - European Cancer Patient Coalition (ECPC),
Belgium - Lancaster University,
UK
5-year project work plan
Work Packages
WP1 – Literature review and country survey
WP2 – Observational study about the effects of proportional sedation
WP3 – Palliative sedation: a multiple case study
WP4 – Moral case deliberation to support decision-making for refractory symptoms/palliative sedation
WP5 – Cost Consequence Analysis and policy recommendations
WP6 – Revision of the EAPC framework for palliative sedation
WP7 – Development of an online educational programme for palliative sedation
WP8 – Dissemination
WP9 – Management