Verhue A, Cohen J, Van Droogenbroeck F, Dury S, De Gieter S, De Moortel D, Vanderstichelen S. Identifying the pathways to increased death literacy: Building a conceptual causal model through a mixed-methods pragmatic ESC-DAGs approach. Palliat Care Soc Pract. 2026 Aug 6;20:26323524261475705. doi: 10.1177/26323524261475705.
Plain Language Summary
Death literacy is the knowledge and skills that let us navigate the end of life and it can help us play a larger role in providing care and support for people confronted with death, dying, and bereavement. However, not much is known yet about how death literacy develops. Based on the literature and input from experts, and using a method that gradually synthesises their input using causal reasoning, we integrated all the possible factors that may influence how people develop death literacy into one model. Our final model identifies 11 factors that influence how death literacy develops. At the individual level, lived experience (e.g., caring for a dying person), indirect exposure (e.g., listening to a podcast about grief), prior non-end-of-life related knowledge (e.g., health literacy), and end-of-life related attitudes (e.g., willingness to provide end-of-life care) influence whether and how death literacy. At the environmental level, policy and the political context, external resources (e.g., 24/7 nurse support), and organisational culture influence whether and how individuals develop death literacy. Lastly, sociodemographic characteristics (e.g., gender or ethnicity) and personal characteristics (e.g. confidence) and cultural norms (e.g., death as taboo) shape individuals’ pathways to higher death literacy. In addition to individual factors, our results show the importance of factors around us (our networks, environments, organisations) to the development of death literacy. The model offers a basis for further research into death literacy and for the development of programs aimed at increasing death literacy. © The Author(s) 2026.
