Death literacy is the knowledge and practical skills people and communities use to make decisions about end-of-life care. It includes personal abilities and community resources that support informed decision making, mutual help, and engagement with healthcare services.
History
The concept grew out of a six-year Australian research project that started in 2009. The project looked at how communities supported people dying at home, with a 2016 paper by Kerrie Noonan, Debbie Horsfall, Rosemary Leonard and John Rosenberg proposing death literacy as a conceptual framework for understanding and describing public health outcomes as they relate to palliative care.
The researchers found that the knowledge and skills gained from the experience of caring for a dying person spread across social networks, strengthening the ability of communities to provide end-of-life in the future.
Independent media coverage The concept has received independent media coverage, including an article in The Guardian in 2016 discussing death literacy in relation to developing practical knowledge around death and dying. The Saturday Paper published an article in 2017 examining death literacy in the context of end-of-life planning, dying at home and talking about death. ABC News also reported on "death literacy" in relation to Dying To Know Day in 2017. In Ireland, The Irish News reported in January 2025 on a Queen's University study seeking views on "death literacy" across Ireland, and the Belfast Telegraph reported on the study's findings in September 2025. In India, the Hindustan Times reported in October 2025 on the country's first Death Literacy Festival, held in Bengaluru in August 2025, describing activities aimed at encouraging conversations about death and dying, including workshops on living wills, advance directives and grief. This festival was covered by other media outlets in India, including The Hindu and The Week, both of which discussed the concept of death literacy and its role in planning for end-of-life. In August 2026, the Hong Kong-based South China Morning Post reported on death literacy in relation to preparing for end-of-life, advance directives and living funerals; this article included findings from a 2025 study of death literacy among Hong Kong residents.
Measurement
To measure death literacy, researchers developed the Death Literacy Index (DLI). The original 29-item version was validated in Australia (Leonard et al., 2021). A shorter nine-item version, the DLI-9, followed in 2024 (Noonan et al.). The DLI has been adapted for use in Turkey, Sweden and Ireland, and has been used in population studies in the United Kingdom, and Singapore.
Related concepts
Death literacy is part of public health approaches to palliative care and is linked to the compassionate communities movement, which encourages communities to support dying people. It is also related to grief literacy, a concept proposed in 2022 (Breen et al.).
Rogerson et al. (2026) describe death literacy as an emerging research area, with scholars examining how it is used in policy and practice.
Significance
Death literacy can support carers and families in navigating the dying process, including making informed choices about end-of-life care, communicating their wishes, and engaging with health professionals. Research has also looked at education and community development as ways of building this knowledge and strengthening people's capacity to support one another around death and dying.
Community approaches Community-based initiatives can provide opportunities for people to develop knowledge and skills relating to death, dying and grief. Death Cafès are informal gatherings that provide a space for people to talk about death and dying. Research has identified Death Cafés as a strategy for fostering compassionate communities and contributing to death and grief literacy.
In Australia, Dying to Know Day was established as a public health campaign to encourage conversations about death, dying and bereavement. The initiative encourages people to develop their death literacy, make plans for end-of-life care and communicate their wishes.
See also
Health literacy Palliative care Thanatology Death Doula
References
External links
Death Literacy Institute – organisation focused on death literacy Dying to Know Day – Australian community initiative focused on death and dying Compassionate Communities Australia – Australian network promoting compassionate communities Death Cafés – international network of community gatherings for conversations about death, dying and grief