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Archive: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

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 in the future.[1]

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.[2] 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.[3] ABC News also reported on "death literacy" in relation to Dying To Know Day in 2017.[4] 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.[5][6] 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.[7] 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.[8][9] 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.[10]

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).[11] A shorter nine-item version, the DLI-9, followed in 2024 (Noonan et al.).[12] The DLI has been adapted for use in Turkey,[13][14] Sweden[15] and Ireland[16], and has been used in population studies in the United Kingdom,[17] and Singapore.[18][19]

Death literacy is part of public health approaches to palliative care and is linked to the compassionate communities movement,[20] which encourages communities to support dying people. It is also related to grief literacy, a concept proposed in 2022 (Breen et al.).[21]

Rogerson et al. (2026) describe death literacy as an emerging research area, with scholars examining how it is used in policy and practice.[22]

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][23] 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 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.[24][25]

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.[26]

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. ↑ Supraja, Charumathi (2025-10-24). "Report: Good.To.Go. Death Literacy Festival" (in en). https://www.hindustantimes.com/books/report-good-to-go-death-literacy-festival-101761284329761.html. 
  8. ↑ Dhanaraj, Ruth (2025-08-21). "Good To Go Death Literacy Festival to debut in Bengaluru" (in en-IN). The Hindu. ISSN 0971-751X. https://www.thehindu.com/books/good-to-go-death-literacy-festival-to-debut-in-bengaluru/article69953260.ece. 
  9. ↑ "Death literacy festival: How living wills are shaping India's end-of-life care" (in en). https://www.theweek.in/news/health/2025/08/25/death-literacy-festival-how-living-wills-are-shaping-india-s-end-of-life-care.html. 
  10. ↑ "Inside a paper coffin: how Hongkongers can prepare for the end of life" (in en). 2026-08-09. https://www.scmp.com/news/hong-kong/society/article/3363410/inside-paper-coffin-how-hongkongers-can-prepare-end-life. 
  11. ↑ 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. 
  12. ↑ 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. 
  13. ↑ 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. 
  14. ↑ 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. 
  15. ↑ 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. 
  16. ↑ 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. 
  17. ↑ 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. 
  18. ↑ 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. 
  19. ↑ "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. 
  20. ↑ 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. 
  21. ↑ 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. 
  22. ↑ 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. 
  23. ↑ 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. 
  24. ↑ 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. 
  25. ↑ "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. 
  26. ↑ 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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