Death literacy... huh?

I often get asked about the meaning and origin of the term 'death literacy'.

So with Dying To Know Day (August 8th) just around the corner, I’ve put together a little overview of the research that informed the term*. So here goes…

In 2009 I was fortunate to collaborate on a research project with Prof Debbie Horsfall and Prof Rosemary Leonard at the School of Social Sciences and Psychology at Western Sydney University. We interviewed carers and their caring networks to understand what enables end of life caring and dying at home. There were many findings (see the Bringing our Dying Home report here) including this: 

"Being part of a caring network was, without exception, transformational at individual and collective levels. People developed knowledge and skills about caring and about the process of dying that empowered them and that many then took into other networks and communities. We found evidence that social capital was increased as a result of caring and that the community’s capacity to care improved. We found, overall, that people’s and communities’ death literacy developed as a result of their experiences."

This pilot research sparked even more questions. We wondered what these findings might mean to the development of compassionate communities – how are/can networks be mobilised to respond to the growing care and support needs in our ageing society?

Further, sustainable change in the end of life sector isn’t going happen through increasing service delivery alone or by creating even more professional services (see for more on this), armed with learningfrom the pilot study we embarked on another 3 years of research with carers, caring networks and service providers. Again. there were many results you can read here: Co-creating an Ecology of Care for the big picture). In regard to Death Literacy we again found:

  ...that carers and their networks were engaged in a critical learning process to develop the knowledge and skills required to care for a person to die at home. The result is what we call death literacy. People and communities with high levels of death literacy have context specific knowledge about death and dying and the ability to put that knowledge into practice as a form of social action. Once this happens death literacy becomes a resource that people can use for the benefit of themselves, their networks and their communities, when facing the complexities of making decisions about their own care and care for others. Death literacy is ‘practice wisdom’, which anyone can develop.

Early this year we published a summary of our ideas in an article ‘Developing Death Literacy’ in Progress in Palliative Care – you can read the full article here

Dying To Know Day (D2KDay) aims to bring this practice wisdom to life in local communities and we define Death literacy simply as…

the practical know-how needed to plan well for end of life. This includes knowledge, skills, and being able to take action. Getting involved in end of life care and having conversations can help build our death literacy.

Why is it an important part of D2KDay?

'Death literacy' recognises the role that everyone has in end of life care and death care. Having knowledge helps us make informed decisions about the care, being able to act on that knowledge is empowering. 

For example, do you know:

  • What an advance care plan is and how it is used?
  • How to access palliative and end of life care in your area? Including death doulas or other end of life workers in your community?
  • About alternatives to hospital death / traditional cremation/burial in your local area?
  • What happens if you die without a will or if don’t have an enduring guardian? 

D2KDay is about shifting focus from “talking about it” to transforming the conversation into one of deep community engagement and social action.

Given this, it is important to remember that death literacy isn’t about reading or writing despite the word ‘literacy’. The concept is also not ‘health literacy’ about death either because the health system is only one small part of the larger death system.

Ultimately it is about finding ways in our modern society to become reacquainted with dying and death again. Which leaves no room for paternalism in healthcare or deathcare. In order for community capacity to grow, we need to enable and support people and their communities to step-up. We need to be there to support and educate when invited, but not protect people from being hands on with their dying or dead. To quote Allan Kelleahear:  

So what is the public health approach to palliative care? 
It's having the community as equal partners.  
They are experts just like you are experts.  
They have practice wisdom.   
They have experiences.  
They can tell you things you do not know. They can help you.  They can even do their OWN community provision. 
If you take the history of dying over the last 1.5 million years the history of professional care of the  dying represents less than .001% of that history.   
People look after their own dying.  
Always have.  
Over the past 50 to 100 years that history has been disrupted, but it doesn't make people less capable.   
The public health approach is about moving the mentality from direct services, clinical, face to face, bedside, acute care or institutional... and moving them towards community health promotion and partnership approaches.

This is why perhaps, there is a growing interest in family based death care, family led funerals and the social movement death midwifery. The Compassionate Communities movement is growing here is Australia too, and The GroundSwell Project and Palliative Care Australia have just announced a symposium in Feb 2017 to champion this work nationally. 

So how is your death literacy? If you are a health care provider – how are you enabling families, individuals to step-up? If you are a policy maker, how are you supporting the development of caring across social networks?

How can you get involved in #D2KDay? 

If you would like to contribute this this discussion, please leave a comment!

And... if you don’t tend to think about dying or death and you made it to the bottom of this article – kudos to you!

* I'm standing on the shoulders of giants writing this blog: with thanks to Prof Debbie Horsfall, Prof Rosemary Leonard and Dr John Rosenberg.