A new European project will investigate current clinical practice, review guidelines and include a prospective clinical study about palliative sedation. Jeroen Hasselaar (Radboud University Medical Center), Sheila Payne (International Observatory on End of Life Care at Lancaster University) and Julie Ling (European Association for Palliative Care – EAPC) explain more.
Project main partners: Ágnes Csikós (Pécs), Lukas Radbruch (Bonn), Daniela Mosoiu (Boekarest/Brasov), Carlos Centeno (Pamplona), Johan Menten (Leuven), Sebastiano Mercadante (Palermo), Kris Vissers (Nijmegen), Sheila Payne (Lancaster), Julie Ling (Dublin), Jeroen Hasselaar (Nijmegen).
Mr. A. has advanced metastasized lung cancer. He is bedbound, suffers from severe and ongoing breathlessness and is anxious that he may choke. Regular treatment doesn’t seem to be effective anymore. The family is deeply concerned seeing their loved one gasping for breath. During a family meeting with the clinical team, it has been discussed that the patient’s life expectancy is limited, a matter of days, and that palliative sedation may offer relief.
Palliative sedation involves the lowering of consciousness in patients in the last phase of life. The term palliative connects this practice to palliative care, but major debate exists about the appropriate application of palliative sedation and the settings where this takes place. Despite national and regional guidelines, regulations, and the EAPC framework, practices are still poorly investigated, and many questions remain.
What constitutes the symptom(s) that may necessitate palliative sedation? How are such symptoms assessed as ‘refractory’ and what is the role of a multidisciplinary (palliative care) team? How is palliative sedation performed and in which context? Should decisions regarding palliative sedation be limited to palliative care specialists, or do we also need to acknowledge and support its broader use in primary care for patients who wish to die at home? And although palliative sedation is largely a medical decision, nurses have a significant role in administering drugs and monitoring the patient’s care and condition. Importantly, how can the patient’s voice, or the views of family caregivers, be heard and incorporated in this field where medical and ethical values seem intertwined?
On 7 and 8 March 2019, the kick-off meeting of a new European project about palliative sedation took place in Amsterdam. The project is financed by the European Union (Horizon 2020) and brings together partners from England, Germany, the Netherlands, Belgium, Spain, Italy, Hungary and Romania. The five-year project (2019-2023) called ‘Palliative Sedation’ – The use of proportional palliative sedation for the relief of refractory symptoms is coordinated by Radboudumc Nijmegen, the Netherlands.
The project will investigate current clinical practice, review guidelines, and will contain a prospective clinical study about palliative sedation. Furthermore, the project 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 framework for palliative sedation. An online learning programme is planned, together with a policy workshop for the further development and implementation of guidelines, in close connection with the EAPC.
- Contact Jeroen Hasselaar, project coordinator, by email.
- ‘Palliative Sedation’ – The use of proportional palliative sedation for the relief of refractory symptoms. View more on the project website.
Join us in Berlin at #EAPC2019…
If you’re attending the 16th EAPC World Congress in Berlin, please come along to an Open Meeting, ‘New EU-funded Palliative Care Research: an Overview of all Projects Launching 2019’ on Friday 24 May at 10:30 to 11:15 in Room 5, second floor. You will hear more about ‘Palliation Sedation’, as well as several other new EU-funded research projects. Download the final scientific programme for the EAPC World Congress here – also available with interactive programme tool. Start perusing and planning now! Register here.