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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

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.[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]

Independent media coverage

The concept has received general media coverage including articles in The Guardian in 2016[2] and The Saturday Paper in 2017.[3] ABC News also reported on "death literacy" in relation to Dying To Know Day in 2017.[4] In Ireland, The Irish News and the Belfast Telegraph reported on an academic study on "death literacy" in Ireland in 2025.[5][6]

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).[7] A shorter nine-item version, the DLI-9, followed in 2024 (Noonan et al.).[8] The DLI has been adapted for use in Turkey,[9][10] Sweden[11] and Ireland[12], and has been used in population studies in the United Kingdom,[13] and Singapore.[14][15]

Death literacy is part of public health approaches to palliative care and is linked to the compassionate communities movement,[16] which encourages communities to support dying people. It is also related to grief literacy, a concept proposed in 2022 (Breen et al.).[17]

Rogerson et al. (2026) describe death literacy as an emerging research area, with scholars examining how it is used in policy and practice.[18]

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.[1][19] 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

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.[20][21]

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.[22]

See also

References

  1. ↑ 1.0 1.1 1.2 1.3 1.4 Noonan, Kerrie; Horsfall, Debbie; Leonard, Rosemary; Rosenberg, John (2016-01-02). "Developing death literacy" (in en). Progress in Palliative Care 24 (1): 31–35. doi:10.1080/09699260.2015.1103498. ISSN 0969-9260. http://www.tandfonline.com/doi/full/10.1080/09699260.2015.1103498. 
  2. ↑ Kaviani, Fareed (2016-11-23). "Festival of dying: is your 'death literacy' lacking?" (in en-GB). The Guardian. ISSN 0261-3077. https://www.theguardian.com/lifeandstyle/2016/nov/23/festival-of-dying-is-your-death-literacy-lacking. 
  3. ↑ Rodie, Cat. "Death literacy and dying at home" (in en). https://www.thesaturdaypaper.com.au/2017/07/29/death-literacy-and-dying-home/15012504004972. 
  4. ↑ "National initiative Dying to Talk encourages communicating dying wishes" (in en-AU). ABC News. 2017-08-09. https://www.abc.net.au/news/2017-08-09/dying-to-talk-encourages-communicating-dying-wishes/8788896. 
  5. ↑ Preston, Allan (2025-01-10). "Study seeks views on 'death literacy' across Ireland" (in en). https://www.irishnews.com/news/northern-ireland/study-seeks-views-on-death-literacy-across-ireland-DKOLORBYPNATVDVYCRXGBGVLHY/. 
  6. ↑ "Study reveals Republic of Ireland has higher level of 'death literacy' than NI" (in en-GB). 2025-09-08. https://www.belfasttelegraph.co.uk/news/health/study-reveals-republic-of-ireland-has-higher-level-of-death-literacy-than-ni/a/112204485.html. 
  7. ↑ 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" (in en). Death Studies 46 (9): 2110–2122. doi:10.1080/07481187.2021.1894268. ISSN 0748-1187. PMID 34152939. https://www.tandfonline.com/doi/full/10.1080/07481187.2021.1894268. 
  8. ↑ 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)" (in en). Palliative Care and Social Practice 18. doi:10.1177/26323524241274806. ISSN 2632-3524. PMID 39314871. 
  9. ↑ Semerci, Vahide; Sönmez Sari, Ebru; Seven, Ahmet (12 December 2022). "Validity and Reliability of the Turkish Version of the Death Literacy Index" (in en). OMEGA - Journal of Death and Dying 88 (3): 807–822. doi:10.1177/00302228221144672. ISSN 0030-2228. PMID 36510355. https://journals.sagepub.com/doi/10.1177/00302228221144672. 
  10. ↑ 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" (in en). OMEGA - Journal of Death and Dying. doi:10.1177/00302228251366736. ISSN 0030-2228. PMID 40767071. https://journals.sagepub.com/doi/10.1177/00302228251366736. 
  11. ↑ 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" (in en). Palliative and Supportive Care 22 (6): 1573–1583. doi:10.1017/S1478951523000548. ISSN 1478-9515. PMID 37170905. https://www.cambridge.org/core/product/identifier/S1478951523000548/type/journal_article. 
  12. ↑ Crawford, Stephanie; Groarke, Jenny; Dempster, Martin; Graham-Wisener, Lisa (2025-02-11). "OP-5 The death literacy index-Island of Ireland (DLI-IRE)". BMJ Supportive & Palliative Care (British Medical Journal Publishing Group): A3.1–A3. doi:10.1136/spcare-2025-MCRC.5. https://spcare.bmj.com/lookup/doi/10.1136/spcare-2025-MCRC.5. 
  13. ↑ 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" (in en). BMC Palliative Care 21 (1). doi:10.1186/s12904-022-01032-0. ISSN 1472-684X. PMID 35962383. 
  14. ↑ Shafeeq, Syarafana (25 September 2025). "Fewer than one in 3 in Singapore knows how to support dying person: Survey by hospice council". https://www.straitstimes.com/singapore/fewer-than-one-in-3-in-singapore-knows-how-to-support-dying-person-survey-by-hospice-council. 
  15. ↑ "Singapore's first Death Literacy Index reveals gaps in end-of-life knowledge". 25 September 2025. https://www.channelnewsasia.com/watch/singapores-first-death-literacy-index-reveals-gaps-in-end-life-knowledge-5369636. 
  16. ↑ Dumont, Katia; Marcoux, Isabelle; Warren, Émilie; Alem, Farah; Alvar, Bea; Ballu, Gwenvaël; Bostock, Anitra; Cohen, S. Robin; et al. (20 July 2022). "How compassionate communities are implemented and evaluated in practice: a scoping review" (in en). BMC Palliative Care 21 (1). doi:10.1186/s12904-022-01021-3. ISSN 1472-684X. PMID 35854292. 
  17. ↑ 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" (in en). Death Studies 46 (2): 425–433. doi:10.1080/07481187.2020.1739780. ISSN 0748-1187. PMID 32189580. https://www.tandfonline.com/doi/full/10.1080/07481187.2020.1739780. 
  18. ↑ Rogerson, Jennifer; Holland-Hart, Daniella; Edwards, Michelle (24 March 2026). "Death literacy: Tensions between theory and practice" (in en). Palliative Care and Social Practice 20. doi:10.1177/26323524261429985. ISSN 2632-3524. PMID 41889789. 
  19. ↑ J, Aiswarya M. (2026-03-26). "Will of the Living" (in en). https://www.newindianexpress.com/kerala/2026/Mar/26/will-of-the-living-2. 
  20. ↑ Chan, Yeng Hsin Jovin; Wu, Xi Vivien; Seah, Betsy; Schmidt, Laura Tham; Woong, Nicholas; Chan, Helen Yue-Lai; Yamamoto-Mitani, Noriko; Ang, Wei How Darryl (June 2026). "Experiencing death cafés: A qualitative evidence synthesis" (in en). International Journal of Nursing Studies 178. doi:10.1016/j.ijnurstu.2026.105392. PMID 41793912. https://linkinghub.elsevier.com/retrieve/pii/S0020748926000647. 
  21. ↑ "Cappuccino, cremations and conversations: Would you visit a death cafe?" (in en-AU). ABC News. 2019-04-20. https://www.abc.net.au/news/2019-04-21/cappuccino-cremation-conversation-would-you-visit-death-cafe/11033430. 
  22. ↑ 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) 5 Suppl 1: A14.4–A15. doi:10.1136/bmjspcare-2015-000906.46. PMID 25960468. https://spcare.bmj.com/lookup/doi/10.1136/bmjspcare-2015-000906.46. 
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