Death literacy: building communities and services that can face dying, death and loss
Death literacy helps people, communities, and services respond to dying, death, bereavement, and after-death care with greater knowledge, confidence, connection, and compassion.
Most of us will, at some point, support someone through serious illness, dying, bereavement, or the practical decisions that follow a death. Yet many people feel uncertain about what to say, where to seek help, or how to offer support. Dying and end-of-life care can remain difficult to discuss until a crisis makes the conversation unavoidable.
Death literacy offers a hopeful starting point. It is the knowledge and skills that enable people to access, understand, and act upon end-of-life and death care options. People and communities with stronger death literacy have context-specific knowledge of the death system and can put that knowledge into practice. It is not about expecting everyone to become an expert, nor about asking families and communities to take on the work of health services. Rather, it recognises that dying, death, after-death care, caring, and grieving are social experiences as well as clinical ones.
In public-health palliative care, strengthening death literacy can be a practical goal. In our research at La Trobe University, we have described death literacy as an outcome of people’s experiences of, and learning about, death and dying and as a resource that can strengthen capacity for future caring. In other words, communities build death literacy through participation: through conversations, caregiving, practical problem-solving, shared reflection, and mutual support.
A community that is death literate is one where people can speak more openly about what matters to them, ask about a loved one’s wishes, and know where to find appropriate support. Family members and friends may feel more confident sharing the practical and emotional work of care. Neighbours, workplaces, schools, community groups, faith communities, and local services can all help ensure that people are not left alone when illness, death, or grief enters their lives.
Health professionals and health systems are essential in this work. Death literacy extends beyond clinical treatment to system navigation, advocacy, psychosocial support, and connections between healthcare, community, and social services. As community education expands, clinicians also need to be aware of the information, groups, programs, and informal networks that can support patients and families before, during, and after a death. In Australia, we are seeing evidence for people asking about options or care that health systems may not yet have developed practices for - such as families wanting to do their own deathcare and funeral arrangements.
We are also beginning to measure death literacy among health professionals and to examine related communication barriers in clinical settings; evidence for specific clinical death-literacy interventions remains preliminary. An Australian survey of 144 allied health clinicians found discipline-specific strengths alongside gaps in some clinicians’ ability to understand, access, and act on end-of-life care options (See Bonvino et al., 2026). In an acute-hospital survey, non-specialist staff reported time pressure, clinical uncertainty, and concern about upsetting patients as barriers to conversations about dying. These findings point to the value of education, support, and role modelling not only in how professionals speak about death, but also in how they recognise and build on family and community capability.
The SEAK model - Skills, Experience, Action, and Knowledge - provides a useful framework. We developed it as an accessible way to bring death literacy concepts to life in community and clinical settings. In clinical encounters, it may provide a useful prompt: what skills, experience, actions, and knowledge does this person or family already have? Its value lies in shifting the conversation away from what families lack and towards the strengths, relationships, and lived expertise that services can acknowledge and strengthen. It can help families to consider their existing strengths and where they can make the most of supports delivered by services.
People’s needs, beliefs, family structures, cultural practices, and experiences of loss differ widely. Building death literacy requires both listening and informing. It means creating opportunities for people to reflect on their values, hear from others, and develop responses that are respectful, culturally safe, and locally meaningful. We are also seeing that there is an opportunity for policy development - for health systems and death systems to create flexible responses to community need.
Death literacy also has an equity dimension. Not everyone has the same access to information, supportive relationships, culturally appropriate services, or the time and resources needed to care. A community approach must create multiple pathways for participation, particularly for people facing social, cultural, geographic, or economic barriers.
Building death literacy begins with small acts: making room for a conversation about what matters at the end of life; asking someone who is grieving how they are managing; learning about local supports; or considering how our organisations respond to death and loss. Communities and services become more death-literate not through information alone, but through conversation, reflection, experience, professional partnership, and collective action.
Three actions you can take:
1. If you are a health professional, make death literacy personal as well as professional. Whatever your discipline, consider your own plans, conversations, support networks, and responses to death and loss. Reflective practice and self-care can build confidence for the moments when patients, families, or colleagues need you to speak clearly, listen well, and connect them with appropriate support.
2. If you work in policy, ask how community and health services can work together. Policies should not treat communities as an afterthought or services as the only source of care. Create policies and funding opportunities that enable genuine partnerships among local groups, families, carers, palliative care providers, funeral services and health services so that people’s practical, social, cultural, and emotional needs can be recognised and met.
3. If you are a community member, begin where you are. Make room for a conversation about what matters at the end of life. Ask someone who is grieving how they are managing. Learn about local supports and share that knowledge with others. Small conversations and acts of connection are how communities build the confidence and relationships needed when death, dying, and loss become part of everyday life.
Death literacy reminds us that end-of-life care is a shared effort. It grows when individuals, families, communities, professionals and policymakers recognise their roles and work together. By making death and dying easier to talk about, support more visible and accessible, and community strengths easier to mobilise, we can make progress toward the goal of ensuring that no one faces dying, death or grief without connection, support and care.
Here are some recent papers you may find useful:
SEAK Model:
Noonan, K., & Read, N. (2026). Death literacy as community practice: Learning through skills, experience, action, and knowledge. In E. Hodges & M. Patel (Eds.), Compassionate communities in action: Global stories of care, loss and connection. Routledge. https://doi.org/10.4324/9781003621348-24
Death literacy Research:
Shrestha, S., Grindrod, A., Lee, S., & Noonan, K. (2026). Changing contexts of death and dying: Influence of the COVID-19 pandemic and voluntary assisted dying legislation on death literacy in Australia. Palliative Care and Social Practice, 20, 1–11. https://doi.org/10.1177/26323524261473623
Lee S, Noonan K, Grindrod A, Shrestha S. Death literacy as relational capability: Pathways from social capital to emotional support. Palliative Care and Social Practice. 2026;20. doi:10.1177/26323524261461311
Van Dinther, K., Noonan, K., Leonard, R., & Javanparast, S. (2025). The Death Literacy Index: Testing the death system literacy of unpaid carers of palliative patients. OMEGA–Journal of Death and Dying. Advance online publication. https://doi.org/10.1177/00302228251319478