Developing death literacy Kerrie Noonan 1 , 2 , Debbie Horsfall 1 , Rosemary Leonard 3 , John Rosenberg 4 1 School of Social Sciences and Psychology, Penrith Kingswood Campus, Western Sydney University Locked Bag 1797, Penrith NSW 2751, 2 Palliative Care, Liverpool Hospital, NSW, Australia, 3 Social Capital and Sustainability, School of Social Sciences and Psychology, Penrith Kingswood Campus, Western Sydney University Locked Bag 1797, Penrith NSW 2751, 4 Supportive and Palliative Care Team QUT, L7, Institute of Health and Biomedical Innovation, 60 Musk Ave, Kelvin Grove, QLD 4059 Death literacy is defined as a set of knowledge and skills that make it possible to gain access to understand and act upon end-of-life and death care options. People, and communities, with high levels of death literacy have context-specific knowledge about the death system and the ability to put that knowledge into practice. Positioned within a public health framework, death literacy is considered an outcome of people’s experiences of and learnings about, death and dying. Death literacy also appears to be a resource that individuals and communities can use for their own benefit strengthening their capacity for future caring. This purpose of this paper is to explore the concept of death literacy using the evidence from a 6-year research project. We do this by examining how it corresponds to, and differs from, existing concepts and practices such as death education, health literacy, and community development. Our aim is to introduce new thinking into public health approaches to palliative care, offer practice development pathways in this arena and propose that death literacy offers a useful conceptual framework for both describing and understanding the outcomes of a public health approach to palliative care. Keywords: Death literacy, Public health and palliative care, Palliative care, Carers, Death education, Community development, Community capacity building We had a great grandfather (who died) before our grandmother died and I was emotional about that and it was kind of the same but when I came into this it was a little bit easier[…]It wasn’t scary[…][focus group member, aged 13] Developing public health approaches to palliative care is a growing field of practice and scholarship. 1,2 Informed by the Ottawa Charter for Health Promotion 3 such approaches aim to promote health and wellbeing, and to provide preventative health ser- vices. 4 Although they remain a marginal discourse in palliative care, public health approaches demonstrate a paradigm shift in palliative care policy and practice. 1,5,6 This shift has triggered a new wave of practice initiatives promoting end-of-life activities and models of care that are delivered within a community develop- ment framework, promoting personal, and commu- nity empowerment. 2,7 A public health approach to end-of-life care is a significant departure from the more dominant approaches that rely on resource- intensive service delivery models of care. Further, in Kellehear’ s view, community development and com- munity capacity building can enhance the ability for knowledge about end-of-life care to be developed and sustained within the community. This then enables communities to utilize support systems, problem solve, make decisions, and communicate and act more effectively when someone in their com- munity is dying. 8 Death literacy provides a framework for delivering this approach. In the UK, the term ‘Compassionate Communities’ has become synonymous with public health and palliative care initiatives and in 2013, a scoping study 7 described these initiatives as diverse and innovative, but noted the work and the out- comes of such initiatives were difficult to define. This is due in part to a lack of conceptual clarity regarding public health and palliative care. 9 In an attempt to remedy this, recent efforts have been made to provide definitional clarity about two key concepts: community development and community engagement. 10,11 Community engagement and community develop- ment are considered distinct but overlapping pro- cesses, yet health promotion initiatives often use these terms interchangeably. 7,11 Community engage- ment in end-of-life care has been defined by Sallnow and Paul as ‘an umbrella term for a process which enables communities and services to work together to understand, build capacity and address issues to Correspondence to: Kerrie Noonan, Liverpool Hospital, NSW, Australia. Email: kerrie.noonan@sswahs.nsw.gov.au © 2016 Taylor & Francis DOI 10.1080/09699260.2015.1103498 Progress in Palliative Care 2016 VOL. 0 NO. 0 1