Compassionate end-of-life care
Patients nearing the end of life experience symptoms like pain, delirium and difficulty in breathing which cause a lot of distress. If available treatments fail and thus alternative medical practices become exhausted, palliative sedation can be considered. Palliative sedation intentionally lowers the consciousness of patients to alleviate intractable suffering from these refractory symptoms.
Revisiting European guidelines
In Europe, palliative sedation is used in 10-18 % of all deaths, although its prevalence varies between countries, regions and institutions. The EU-funded PalliativeSedation project recognised the need to gather systematic evidence on the practice of palliative sedation and to inform healthcare professionals, policymakers and the general public about its ethical, medical and social aspects. “Our key objective was to investigate current practices of proportional palliative sedation that tailor sedation to a patient’s comfort level,” explains Jeroen Hasselaar, professor at Radboud University Medical Center and PalliativeSedation project coordinator. In 2009, the European Association on Palliative Care released a framework on palliative sedation containing guidelines on indication, evaluation and technical procedures. The project team revised this framework with modern terminology, placing emphasis on proportionality in sedation. The framework addresses key issues such as appropriate indications for sedation, evaluation protocols, decision-making processes and ethical considerations. It serves as a guideline for healthcare providers, ensuring the practice is applied with precision and compassion.
Study on European sedation practices
The project team conducted observational studies across various European countries to assess how palliative sedation is used in practice in different cultural and national contexts. They compared the use of medication, the length and depth of sedation, patient comfort and decision-making processes. Despite challenges posed by the COVID-19 pandemic, a total of 248 patients were included, 80 of which received palliative sedation in their final days. Observational data on these patients were accompanied with interviews conducted with both relatives and healthcare providers to record their experiences and reflections on the process. Healthcare providers discussed difficult cases where palliative sedation was considered or administered using moral case deliberation. “These sessions offered invaluable insights into the ethical dilemmas healthcare professionals face and contributed to the project’s evidence base,” highlights project researcher Ian Koper.
Dissemination of knowledge
One of the most significant achievements of the PalliativeSedation project was its ability to inform diverse audiences, from healthcare professionals to policy makers and the general public. To this end, the team developed a massive open online course (MOOC), an e-book and other educational materials. These resources not only provide healthcare professionals with up-to-date information and guidelines on palliative sedation but also educate patients and their families on this medical practice. In addition, the project organised a policy workshop for policymakers across Europe to share findings and promote implementation of the updated framework. Overall, the findings of the PalliativeSedation project ensure that patients in the final phase of life receive compassionate, proportional care tailored to their needs. Looking ahead, the project has identified several areas for further work to support the broader implementation of its findings. Extending the reach of the online education programme and refining policy recommendations are among the proposed future steps.
Keywords
PalliativeSedation, palliative sedation, framework, guidelines, refractory symptoms, end-of-life care
