Death Literacy and Grief Literacy

What is death literacy?

Attempts to define a specific concept of ‘death literacy’ emerged from Australian research into social and caring networks, which found that caring for someone towards the end of their life is a catalyst for learning about how to provide care, and how to navigate the health system and the ‘death system’.

The outcome of this learning process was labelled ‘death literacy’:

DEATH LITERACY IS ...

... the knowledge and skills that people need to make it possible to gain access to, understand, and make informed choices about 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.

Leonard et al (2020)

Efforts have been made to create a tool, the Death Literacy Index (DLI), to measure death literacy within populations. The DLI questionnaire gathers information about four key areas: Practical Knowledge; Experiential Knowledge; Factual Knowledge; Community Knowledge.

What is grief literacy?

A model of ‘grief literacy’ has been suggested to augment the concept of death literacy (Breen et al, 2020), defined as:

The capacity to access, process, and use knowledge regarding the experience of loss.

This capacity is multidimensional: it comprises knowledge to facilitate understanding and reflection, skills to enable action, and values to inspire compassion and care.

These dimensions connect and integrate via the interdependence of individuals within socio- cultural contexts.

“Our definition of grief literacy integrates the three components of knowledge, skills, and values. Their connection and integration means that grief literacy is greater than the sum of its parts. In addition, we envision that grief literacy is embedded in an inclusive, nurturing community that involves the interdependence of individuals within sociocultural contexts. Thus, grief literacy extends beyond the individual person; instead, it is a broader concept that reflects the capacity and values of a community and society.”

(Breen et al 2020)

Bringing it together - the Good Life, Good Death, Good Grief approach

The concepts of ‘grief literacy’ and ‘death literacy’ are helpful in describing important aspects of Good Life, Good Death, Good Grief’s work.

They help to articulate how various elements are of significance when considering an individual’s ability to cope with and offer support through deteriorating health, dying or bereavement, including:

Knowledge about the issues that can arise towards the end of life and in bereavement, about different people and services that can help, and about where to find out more information.
Information that can be accessed when needed.
Practical skills to provide help and support to friends, family and community members when they need it.
Experience of caring for others that takes knowledge and skills beyond the theoretical.
Values that inspire compassion and care.
Empowerment so that people have the confidence and opportunities to seek knowledge, skills and experience, act on their values, to question current norms and seek better conditions for their community.
Communities that expect and enable their members to care and offer practical help.
Action putting knowledge, skills and experience to use to help others at the end of life and through bereavement, being part of a community and empowering others to be end of life literate.

Our work at GLGDGG aims to be holistic in addressing all of these areas.

Photo by Mathia Reding