Tracking change, building capacity: Why we developed a death literacy index

An article written by Dr Kerrie Noonan, Adjunct Associate Professor, Public Health Palliative Care Unit, La Trobe University. Director of Death Literacy Institute

Tracking change, building capacity: Why we developed a death literacy index

Most of us aren’t taught how to navigate dying and death. But when someone close to us is dying, we often need to care, make decisions, and know what to do. That’s where death literacy becomes vital.

Death literacy is the knowledge and skills that help people navigate end-of-life and death care systems, make informed decisions, and support others. Having this know-how helps us build confidence in dealing with death, dying, and grief.

Why develop an index for death literacy?

The idea for the death literacy index came from the Caring at End of Life research team at Western Sydney University. Over six years, 300 people shared their stories of caring for someone who was dying at home, what they learned, what challenges they faced, and how their social networks supported them.

This research found that caring for someone at the end of life can be a meaningful and powerful learning experience. People spoke about navigating both the health system and the ‘death system’, and about how their networks of family, friends, and community helped to support them. People learned important things from each other about accessing palliative care and other services, as well as the ‘hands-on’ care needed at the end of life, and even how to plan for funerals. These experiences shaped the concept that we referred to as ‘death literacy’.

It took investment from the Wicking Trust and 4 years of research to refine and validate the Death Literacy Index (DLI). It took time because the questions were developed with support from people with lived experience and from healthcare and death care professionals. It has since been tested by other researchers and validated for use in multiple countries, including the development of a DLI for people with dementia and their carers in the UK. In Australia, it has been used by researchers and community groups in metropolitan, rural, and diverse communities.

What is it used for?

Social interventions, such as those found in public health and community development, are often long-term and focused on building upon the existing strengths within communities.

But they can be challenging to evaluate. The DLI was developed with this in mind, but like other public health or social indices, it is designed to provide a benchmark measure of death literacy in groups of people.

Simply, we wanted to design a survey that would help us to learn about death literacy in Australia and explore how, and whether, it changes over time. This means that both small and large-scale initiatives, such as Compassionate Communities programs, can use the death literacy index to track progress. It can be used in local communities, organisations, or across entire countries to track change over time, target interventions where they’re needed, and build on existing strengths. When used before and after community education programs, the DLI can provide helpful evidence of change.

We have also used the questions from the Death Literacy Index to develop a set of cards that can be used to spark conversations in large groups and clinical settings.

(illustration by Niki Read)

The Death Literacy Index questions

The Death Literacy Index is a 29-item survey tool with four scales that provide information about:

1. Practical Knowledge (8 items)
2. Experiential Knowledge (5 items)
3. Factual Knowledge (7 items)
4. Community Knowledge (9 items)

It takes about 5 minutes to complete and in 2024, we revised the questions of the Death Literacy Index, improving readability and in response to feedback from our international colleagues. [1] A short version consisting of 9 questions was also developed and validated in 2024. [1]

A tool for change

Ultimately, the DLI offers more than a number. The DLI is also designed to support a public health palliative care approach that recognises communities as equal partners in the work of end-of-life care. These initiatives build on local strengths like social connection, reciprocity, and trust. The DLI helps show how those strengths grow over time and how community efforts are making a difference.

It provides insight into what people know and how supported they feel when facing the most challenging times in life. And by measuring death literacy in an evidence-based way, we create a platform for informed action, stronger networks, and more compassionate care.

Building on evidence

We believe that policymakers should have access to validated tools, and reliable data about both health initiatives and social impact outcomes. Too often, poorly supported claims and the misuse of survey data in the palliative and aged care fields obscure the evidence base. Anecdotal accounts, emotional appeals, or marketing-driven narratives while useful for raising awareness, can distort statistics and direct funding toward ineffective interventions. By contrast, policy and practice initiatives can flourish when grounded in robust evidence, using tested tools like the Death Literacy Index, can help to inform decision making and the delivery of programs that benefit communities. 

Reference:

1. Noonan K, Grindrod A, Shrestha S, Lee S, Leonard R, Johansson T. Progressing the death literacy index: The development of a revised version (DLI-R) and a short format (DLI-9). Palliat Care Soc Pract. 2024;18.

Helpful Reading:

1. Noonan K, Horsfall D, Leonard R, Rosenberg J. Developing death literacy. Prog Palliat Care. 2016;24(1):31-35.
    

Author

Dr Kerrie Noonan

Adjunct Associate Professor, Public Health Palliative Care Unit, La Trobe University

Director, Death Literacy Institute