Death Literacy Index: A Report on its Development and Implementation

The Death Literacy Index (DLI) provides a means to measure and research public health palliative care initiatives, including those under the umbrella of Compassionate Communities, by exploring the ways in which community members’ knowledge and practice are enhanced through these initiatives. Within public health palliative care, the Compassionate Communities approach views the community as equal partners in the long and complex task of providing quality health care at end of life. Over the past decade there has been growing acknowledgement that communities have been marginalised in the increasingly professionalised EOL care service sector. In contrast Compassionate Communities draw upon the social connections, reciprocity and trust available when social capital is present in a community. Thus, the DLI is designed to be used by community practitioners and researchers alike. This report provides an overview of the concept of death literacy and the development of the DLI. The DLI was developed from personal narratives of carers, with input from a wide range of professionals and experts and was tested on a national sample of Australians. The report includes detailed information about the development of the Index, reliability and validity statistics, four case studies demonstrating the uses of the DLI and a series of data tables for understanding the norms and baseline data about death literacy in Australia.