Researchers based at the Cicely Saunders Institute decided to explore death literacy among people in the United Kingdom.

2,106 adults across the UK took part in an online survey. The survey asked about peoples’ knowledge and experiences of dying, death and bereavement using a scale called Death Literacy Index-Revised (DLI-R), as well as background information such as their age and ethnicity. The DLI-R was developed through community-based research in Australia exploring the experiences of families supporting individuals to die at home.

Overall, people in the UK scored around 6 out of 10 on the DLI-R scale. The highest scores related to knowledge and skills gained through personal experiences, while the lowest scores were in knowing how to find and access help in the community. People who had personally cared for someone at the end of life, or who had worked or volunteered in a setting involving death or bereavement, had higher scores than those with no such experience.

Marital status also mattered, with people who were single and who had never married scoring lower than married people. Adults aged 25–34 reported slightly higher death literacy scores than older adults. Ethnicity also played a role, with Black and Black British people scoring higher compared to other groups such as White and White British people. Death literacy scores were not influenced by gender or education level.

This study shows that personal and professional experiences with death and dying play an important role in shaping people’s knowledge, skills, and confidence around end-of-life care. Approaches that encourage people to learn from others’ experiences, support community involvement, and make it easier to find information and access services may help people better support one another through dying, death, and bereavement.

Diggle MFJ, Johansson T, Davies JM, Heaps K, Sleeman KE. Associations between sociodemographic factors, experience of death and dying, and death literacy: A nationally representative cross-sectional study. Palliat Care Soc Pract. 2026 Sep 3;20:26323524261473937. doi: 10.1177/26323524261473937. PMID: 42703383; PMCID: PMC13546418.