The concept of death literacy emerged from research seeking to describe how families and communities come together to care. A key finding of this research was a deeper understanding of how a network of caregivers can provide care at home when someone is dying. One finding described how carers had the ability to 'do it their way' and often with no prior knowledge they demonstrated the skills and abilities needed to care for a dying person at home. The term death literacy was applied as a way to capture this experience and learning.
Since this initial research, the death literacy index (DLI) has been developed. This 29-item tool is designed to support the development and evaluation of compassionate communities initiatives as well provide useful evidence about the impact of community engagement and education strategies. The tool itself has been validated but we are still learning about its application in research and evaluation. At the present time there have been no longitudinal studies, though there is a body of work developing in the UK and Europe where it is being translated for use with communities.
COTA NSW have completed a significant body of work to understand the needs of their members and older people in NSW in regard to end of life planning, funerals, and palliative care. Using this existing data and information from the DLI we worked with COTA NSW to develop death literacy training program for their members.
The table below is from the survey with 830 COTA NSW members. As you can see the large majority had completed legal documents such as Wills, a Power of Attorney, and an Enduring Guardian. Fewer people had planned a funeral and fewer still talked to their GP about their end-of-life wishes. The COTA members also scored above the Australian death literacy benchmarks, adding further evidence to the finding that death literacy is strongly related to age and experience. That is the more experiences with the death system the more knowledge and skills we develop.
| Question |
Response (proportion of all respondents, %) |
| Yes |
No |
| I have a Will |
92% |
8% |
| Appointed someone to make decisions regarding your health or wellbeing, e.g. Enduring guardianship /Health care poxy |
68% |
32% |
| Appointed someone to make decisions regarding finances or property, e.g. Enduring Power of Attorney/Legally appointed substitute decision-maker |
70% |
30% |
| Planned my funeral |
30% |
70% |
| I have helped someone to make plans for end of life (e.g. advance care plans, funerals) |
48% |
52% |
| Discussed my end of life plans (advance care plan) |
60% |
40% |
| Written down my end of life plans (advance care directive) |
36% |
64% |
| I have talked to a doctor about my end of life plans/wishes |
20% |
80% |
Armed with this information and working alongside the COTA NSW team we have developed death literacy training focused on conversations, palliative care, and funeral planning. The 3-4 hour training provides both didactic and creative learning tools as well as sourcing existing information from organisations such as Advance Care Planning Australia, Palliative Care Australia, CHOICE, and Tender Funerals Australia.
COTA NSW peer trainers have now been trained and the next phase of the project will be the rolling out of the training for members. We will repeat the DLI and other surveys in the future.
So far it has been a positive process, but there have been some good learnings along the way. For experienced groups like the COTA NSW members using the DLI as a stand-alone tool would not have been useful for understanding information needs. It was the surveys on end-of-life planning, previous training, and experiences that helped to identify key areas of need.
Our hope is that sharing this project, adds to the rapidly developing field of end of life, death and grief literacy concepts, tools and training resources.
If you want to know more about the DLI head to the Death Literacy Institute.
Dr Kerrie Noonan, Director and Clinical Psychologist, Death Literacy Institute and Adjunct Research Fellow at Western University Sydney
This work will be presented at the Oceanic Palliative Care Conference 2021.