Unfortunately, in the UK, this is often not the case. Health and social care services are under significant strain, worsened by the COVID-19 pandemic. Healthcare inequalities have deepened, leaving many individuals with inadequate care and support at the end-of-life and during bereavement. This means patients often spend their final days in pain, unable to access the help they need, while carers and families are often left distressed and without support.

This pressing issue has sparked increasing demand across the UK for palliative and end-of-life care that is fully integrated, accessible and focused on the needs of patients and their families. At King’s, researchers like Professor Katherine Sleeman are leading efforts to turn this vision into action.

Identifying areas for change

In 2021, Professor Sleeman launched the Better End of Life Project, a three-year research programme funded by Marie Curie. The project brought together experts from the Cicely Saunders Institute at King’s, the University of Hull, and the University of Cambridge to address a crucial issue: improving end-of-life care across the UK.

The project set out to understand the experiences of people affected by dying, death and bereavement today. The aim was not only to capture these experiences but to turn them into compelling evidence that would drive policy change. To achieve this, the project focused on three key workstreams:

• A cross-sectional survey of bereaved relatives, offering insights into the experiences of dying people across England and Wales.
• Mapping the current care and services available, identifying inequalities and gaps in provision of care, especially out-of-hours.
• Analysis of routinely collected data to uncover patterns in care towards the end-of-life, and opportunities for improvement.

 This comprehensive approach allowed the project to identify clear areas for change, helping shape the future of palliative and end-of-life care.

Developing the Better End of Life Project

 As part of the project, Professor Sleeman and her team focused on understanding out-of-hours care for people with advanced illness and their informal carers. They analysed data from emergency department attendances during the last year of life for those who died in 2020 across the UK, providing valuable insights into patterns of emergency care use.

To deepen their understanding, the project team conducted interviews with healthcare professionals across the UK responsible for commissioning or overseeing out-of-hours palliative care. These interviews revealed gaps in service provision and highlighted opportunities for improvement.

 A key strength of the Better End of Life Project was its strong emphasis on patient and public involvement. People with lived experience of advanced illness, as well as those caring for family members at the end-of-life, were actively involved throughout the research process. From shaping survey questions to contributing to data analysis, their input ensured the research was grounded in real-life experiences.

The project’s findings have provided clear recommendations for policy change, demonstrating the potential of the research to shape the future of palliative and end-of-life care. Professor Sleeman and her team also identified gaps in current evaluation methods, calling for further research and new models of care to guide future service development.

Continuing impact

Since its launch, the Better End of Life Project has prioritised real-world impact - centering the voices of patients, carers, and families in efforts to influence national policy. From the outset, it was purposefully designed to translate research into meaningful change, with a strong emphasis on reaching audiences beyond academia. Its core outputs were four influential reports, designed to inform and shape public and policy discourse on palliative and end-of-life care, with academic publications serving to support and deepen this work. 

The project’s reports have informed a range of key policy developments. The 2022 report was cited in a Parliamentary Office of Science and Technology (POST) briefing on palliative care, which called for improvements to service provision, workforce development, public awareness, and funding - all aimed at improving quality of life for people nearing the end-of-life, and their families. 

In 2024, the Time to Care report provided a powerful, often painful, account of end-of-life experiences from the perspective of bereaved carers. It highlighted issues such as unmanaged pain, long waits in emergency departments, and inconsistent support - drawing wide attention from policymakers. The findings have been cited across multiple platforms and have contributed to ongoing debates around assisted dying in the UK.

Significantly, the project’s work has fed into parliamentary discussions and directly influenced legislation. Evidence from the team’s policy analysis was used to support amendments to the Health and Care Act (2022), which now requires all Integrated Care Systems in England to provide specialist palliative care services across all settings.

As public interest in end-of-life care continues to grow, the work of the Better End of Life Project continues to inform policy, guide service development, and spark dialogue about how care at the end-of-life can and must be improved. It has laid a strong foundation for future research and reform, ensuring that end-of-life care remains a national priority.