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Death literacy

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From Wikipedia, the free encyclopedia

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, 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

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The concept has received global independent 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

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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).[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]

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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

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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][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

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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.[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

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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. ↑ Kaviani, Fareed (2016-11-23). "Festival of dying: is your 'death literacy' lacking?". The Guardian. ISSN 0261-3077. Retrieved 2026-09-11.
  3. ↑ Rodie, Cat. "Death literacy and dying at home". The Saturday Paper. Retrieved 2026-09-11.
  4. ↑ "National initiative Dying to Talk encourages communicating dying wishes". ABC News. 2017-08-09. Retrieved 2026-09-11.
  5. ↑ Preston, Allan (2025-01-10). "Study seeks views on 'death literacy' across Ireland". The Irish News. Retrieved 2026-09-11.
  6. ↑ "Study reveals Republic of Ireland has higher level of 'death literacy' than NI". Belfast Telegraph. 2025-09-08. Retrieved 2026-09-11.
  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". Death Studies. 46 (9): 2110–2122. doi:10.1080/07481187.2021.1894268. ISSN 0748-1187. PMID 34152939.
  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)". Palliative Care and Social Practice. 18 26323524241274806. doi:10.1177/26323524241274806. ISSN 2632-3524. PMC 11418362. 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". OMEGA - Journal of Death and Dying. 88 (3): 807–822. doi:10.1177/00302228221144672. ISSN 0030-2228. PMID 36510355 – via Sage Journals.
  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". OMEGA - Journal of Death and Dying 00302228251366736. doi:10.1177/00302228251366736. ISSN 0030-2228. PMID 40767071.
  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". Palliative and Supportive Care. 22 (6): 1573–1583. doi:10.1017/S1478951523000548. ISSN 1478-9515. PMID 37170905 – via Cambridge.
  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.
  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". BMC Palliative Care. 21 (1) 145. doi:10.1186/s12904-022-01032-0. ISSN 1472-684X. PMC 9374575. 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". The Straits Times. Retrieved 9 September 2026.
  15. ↑ "Singapore's first Death Literacy Index reveals gaps in end-of-life knowledge". Channel News Asia. 25 September 2025. Retrieved 25 September 2025.
  16. ↑ 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) 131. doi:10.1186/s12904-022-01021-3. ISSN 1472-684X. PMC 9297657. 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". Death Studies. 46 (2): 425–433. doi:10.1080/07481187.2020.1739780. hdl:20.500.11937/78687. ISSN 0748-1187. PMID 32189580.
  18. ↑ Rogerson, Jennifer; Holland-Hart, Daniella; Edwards, Michelle (24 March 2026). "Death literacy: Tensions between theory and practice". Palliative Care and Social Practice. 20 26323524261429985. doi:10.1177/26323524261429985. ISSN 2632-3524. PMC 13013998. PMID 41889789.
  19. ↑ J, Aiswarya M. (2026-03-26). "Will of the Living". The New Indian Express. Retrieved 2026-09-11.
  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". International Journal of Nursing Studies. 178 105392. doi:10.1016/j.ijnurstu.2026.105392. PMID 41793912 – via Science Direct.
  21. ↑ "Cappuccino, cremations and conversations: Would you visit a death cafe?". ABC News. 2019-04-20. Retrieved 2026-09-11.
  22. ↑ Noonan, Kerrie (1 April 2015). "OA46 Dying to know day: a public health campaign in australia". BMJ Supportive & Palliative Care. 5 Suppl 1. British Medical Journal Publishing Group: A14.4–A15. doi:10.1136/bmjspcare-2015-000906.46. PMID 25960468 – via BMJ Journals.
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