Today the Academy launches a new workshop report on how to improve care for people at the end of their lives. We review challenges and opportunities for the field of palliative care, and seek to use these insights to enable research to better support dying people and those close to them.
This report summarises the discussions from a workshop we convened back in January, before the COVID-19 pandemic was declared. However even then it was clear that with the UK’s ageing population and growing numbers of people living with multiple long-term diseases, the UK is going to be facing a rise in people dying in the coming years.
This wider context sits alongside a need for open discussion about the limits of medicine, the appropriateness of individual treatments, and the need to focus on each person and what actually matters to them at the end of life – not just what’s the matter with them. The current COVID-19 pandemic can only make these conversations more urgent.
This workshop report builds on the Academy’s public engagement work on death and dying over the past two years. In summer 2019 the Academy launched its biggest ever programme of work to directly engage the public with medical science: The Departure Lounge. This interactive installation and website enabled people to explore and share stories about death through the eyes of carers, patients and healthcare workers, with the accompanying media campaign reaching over 7 million people.
Many of the issues raised through our public engagement work emerged again in January’s workshop, which was attended by experts in palliative care, from nurses and hospice volunteers to researchers and policymakers.
In particular, participants flagged the need to overcome the fragmentation of the end of life and palliative care landscape to provide better care for people as they die, and to bring together initiatives from across both local and national levels. Attendees emphasised the importance of involving patients and the public more in scientific work on death and dying, from taking part in study trials, to asking the research questions that really matter.
Finally, we need to place evidence at the heart of dying well – researchers, health and social care workers and policymakers need to work together to improve evidence-based practice and share this expertise across different areas of medicine. We have to provide better financial support for this historically underfunded and understaffed research area.
People at the workshop agreed to use their new connections from the meeting to work more closely together. They also identified a number of key priorities to address in the near and longer-term, such as: improving training for health workers to better approach the social aspects of patients dying; reviewing how current national and local initiatives around palliative care interact; and enhancing oversight, funding and co-ordination of palliative care research.