Palliative Sedation – The use of proportional palliative sedation for the relief of refractory symptoms

The call identifies a major need to strengthen the evidence of available and high quality palliative care interventions to improve quality of life in the last phase of life. Due to the increasing number of patients with advanced cancer and multiple chronic diseases, the number of patients with complex end-of-life care needs and refractory symptoms, is expected to increase dramatically.
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. Palliative sedation has been defined in different ways but core components involve the deliberate lowering, by medication, of the consciousness of a patient in the last phase of life. It is estimated that palliative sedation precedes 10-18% of all deaths in European countries, although with considerable differences. Until now, guidelines for palliative sedation are mostly based on expert consensus because data from prospective clinical studies are scarce.
The five year project (2019-2023) called ‘Palliative Sedation’ – The use of proportional palliative sedation for the relief of refractory symptoms” aims to investigate the use of palliative sedation in several European countries. The project will investigate current practices and guidelines, will contain a prospective clinical study about palliative sedation. The project furthermore focuses on the similarities and differences in both the clinical and ethical aspects of practice across Europe and will formulate recommendations for an updated European Association for Palliative Care (EAPC) framework for palliative sedation. An online learning programme is foreseen together with a policy workshop for further development and implementation. Partners are located in Belgium, the Netherlands, England, Germany, Spain, Italy, Hungary, and Romania.
Where most of the literature is restricted to continuous deep sedation and possible life shortening effects, we want to consider palliative sedation as a continuum from light to deep sedation and from intermittent to continuous sedation. The administration of sedatives for refractory symptoms should be based on what is needed for symptom relief and its success should therefore be studied in terms of reduction of patient distress with sedation as a means. Patient comfort is the aim, not deep sedation as such. Although this is mentioned in most guidelines, most research is limited to continuous deep sedation. To reflect this broader research intention we will use the term proportional palliative sedation.
The main goals of this project are:
1) To evidence and investigate the practice of proportional palliative sedation using:
a. An observational clinical study
b. A multiple case study
2) To investigate the use of moral case deliberation for palliative sedation
3) To revise the 2009 EAPC recommended framework for palliative sedation
4) 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

Time: 1st January 2019 – 31st December 2023 

Contact HOSPICE Casa Sperantei: Flavia Hurducas,