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Death literacy

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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. [1]

History

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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, and its findings led to the term "death literacy" being coined in a 2016 paper by Kerrie Noonan, Debbie Horsfall, Rosemary Leonard and John Rosenberg. [1]

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 care in the future.[1]

Measurement

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To measure death literacy, researchers developed the Death Literacy Index (DLI). The original 29-item version was validated in Australia (Leonard et al., 2021).[2] A shorter nine-item version, the DLI-9, followed in 2024 (Noonan et al.).[3] The DLI has been adapted for use in Turkey,[4][5] Sweden,[6] and China,[7] and has been used in population studies in the United Kingdom[8] and Singapore.[9][10]

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Death literacy is part of public health approaches to palliative care and is linked to the compassionate communities movement,[11] which encourages communities to support dying people. It is also related to grief literacy, a concept proposed in 2022 (Breen et al.).[12]

Rogerson et al. (2026) describe death literacy as an emerging research area, with scholars examining how it is used in policy and practice.[13]

Significance

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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. [1] 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. [1]

Community approaches

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Community-based initiatives can provide opportunities for people to develop knowledge and skills relating to death, dying and grief. Death Cafés 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.[14]

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.[15]

See also

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References

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  1. 1 2 3 4 5 Noonan, Kerrie; Horsfall, Debbie; Leonard, Rosemary; Rosenberg, John (2016-01-02). "Developing death literacy". Progress in Palliative Care. 24 (1): 31–35. doi:10.1080/09699260.2015.1103498. ISSN 0969-9260.
  2. ↑ Leonard, Rosemary; Noonan, Kerrie; Horsfall, Debbie; Kelly, Marguerite; Rosenberg, John P.; Grindrod, Andrea; Rumbold, Bruce; Rahn, Alison (2022-10-21). "Developing a death literacy index". Death Studies. 46 (9): 2110–2122. doi:10.1080/07481187.2021.1894268. ISSN 0748-1187.
  3. ↑ Noonan, Kerrie; Grindrod, Andrea; Shrestha, Sumina; Lee, Sora; Leonard, Rosemary; Johansson, Therese (17 September 2024). "Progressing the Death Literacy Index: the development of a revised version (DLI-R) and a short format (DLI-9)". Palliative Care and Social Practice. 18. doi:10.1177/26323524241274806. ISSN 2632-3524. PMC 11418362. PMID 39314871.
  4. ↑ Semerci, Vahide; Sönmez Sari, Ebru; Seven, Ahmet (12 December 2022). "Validity and Reliability of the Turkish Version of the Death Literacy Index". OMEGA - Journal of Death and Dying. 88 (3): 807–822. doi:10.1177/00302228221144672. ISSN 0030-2228 – via Sage Journals.
  5. ↑ Semerci Çakmak, Vahide; Sönmez Sarı, Ebru; Seven, Ahmet (2025-08-06). "Death Literacy Index Short Form: Cultural Adaptation and Psychometric Evaluation of the Turkish Version". OMEGA - Journal of Death and Dying. doi:10.1177/00302228251366736. ISSN 0030-2228.
  6. ↑ Johansson, Therese; Tishelman, Carol; Eriksson, Lars E.; Cohen, Joachim; Goliath, Ida (23 April 2023). "Factors associated with death literacy among Swedish adults: A cross-sectional exploratory study". Palliative and Supportive Care. 22 (6): 1573–1583. doi:10.1017/S1478951523000548. ISSN 1478-9515 – via Cambridge.
  7. ↑ Che, Sok Leng; Li, Xiang; Zhu, Mingxia; Ng, Wai I (2023-05-11). "The Death Literacy Index: translation, cultural adaptation, and validation of the Chinese version". Frontiers in Public Health. 11. doi:10.3389/fpubh.2023.1140475. ISSN 2296-2565.
  8. ↑ Graham-Wisener, Lisa; Toner, Paul; Leonard, Rosemary; Groarke, Jenny M. (2022-08-13). "Psychometric validation of the death literacy index and benchmarking of death literacy level in a representative uk population sample". BMC Palliative Care. 21 (1). doi:10.1186/s12904-022-01032-0. ISSN 1472-684X.
  9. ↑ Shafeeq, Syarafana (25 September 2025). "Fewer than one in 3 in Singapore knows how to support dying person: Survey by hospice council". The Straits Times. Retrieved 9 September 2026.{{cite web}}: CS1 maint: url-status (link)
  10. ↑ "Singapore's first Death Literacy Index reveals gaps in end-of-life knowledge". Channel News Asia. 25 September 2025. Retrieved 25 September 2025.{{cite web}}: CS1 maint: url-status (link)
  11. ↑ Dumont, Katia; Marcoux, Isabelle; Warren, Émilie; Alem, Farah; Alvar, Bea; Ballu, Gwenvaël; Bostock, Anitra; Cohen, S. Robin; Daneault, Serge; Dubé, Véronique; Houle, Janie; Minyaoui, Asma; Rouly, Ghislaine; Weil, Dale; Kellehear, Allan (20 July 2022). "How compassionate communities are implemented and evaluated in practice: a scoping review". BMC Palliative Care. 21 (1). doi:10.1186/s12904-022-01021-3. ISSN 1472-684X. PMC 9297657. PMID 35854292 – via Springer Nature.
  12. ↑ Breen, Lauren J.; Kawashima, Daisuke; Joy, Karima; Cadell, Susan; Roth, David; Chow, Amy; Macdonald, Mary Ellen (2022-02-07). "Grief literacy: A call to action for compassionate communities". Death Studies. 46 (2): 425–433. doi:10.1080/07481187.2020.1739780. ISSN 0748-1187.
  13. ↑ Rogerson, Jennifer; Holland-Hart, Daniella; Edwards, Michelle (24 March 2026). "Death literacy: Tensions between theory and practice". Palliative Care and Social Practice. 20. doi:10.1177/26323524261429985. ISSN 2632-3524 – via Sage Journals.
  14. ↑ Laranjeira, Carlos; Dixe, Maria Anjos; Querido, Ana; Stritch, Jennifer Moran (2022-08-02). "Death cafés as a strategy to foster compassionate communities: Contributions for death and grief literacy". Frontiers in Psychology. 13. doi:10.3389/fpsyg.2022.986031. ISSN 1664-1078. PMC 9379088. PMID 35983204.
  15. ↑ Noonan, Kerrie (1 April 2015). "OA46 Dying to know day: a public health campaign in australia". BMJ Supportive & Palliative Care. British Medical Journal Publishing Group: A14.4–A15. doi:10.1136/bmjspcare-2015-000906.46 – via BMJ Journals.
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