Most of us only talk about death when we have to.
After all, it’s something most of us know very little about.
Few of us have been present with the dying, or cared for the dying or seen our loved ones “laid out” after death. Death often takes us by surprise and we find ourselves organising funerals when we are in the midst of numbing and unexpected grief.
So it’s hardly surprising that when death occurs it’s not uncommon for people to describe feeling helpless and uncertain: Who do we call on for help? What’s required when someone is dying or has just died?
I’m fortunate to be involved in a research project at the University of Western Sydney with Dr Debbie Horsfall and Assoc. Prof Rosemary Leonard. We are looking at the experiences of care networks. We defined ‘care network’ as the group of friends, family, neighbours and other informal caregivers and supporters who gather around and support the primary caregiver when someone with a terminal illness is being cared for at home. We presented the preliminary results at the Australian and New Zealand Third Sector Conference last month and one of the key findings I presented on was death literacy.
Everything changes, it seems, once you have cared for someone who is dying.
Many people in care networks report that their knowledge and death and dying “grew” over the time they were part of this care network. It’s clear that they are empowered by what they learnt about the dying process, caring at end-of-life, as well as post-death practices such as keeping a person at home after death, organising funerals and so on. But it doesn’t stop there. Other knowledge is acquired as they learnt to navigate the “system” – how to organise the in-home medical and nursing care needed, how to ask for and get help (or not!) from friends and family, and how to have conversations about end-of-life decisions.
We called this new knowledge ‘death literacy’ because what we heard again and again in our focus groups with members of these care networks was people saying “I never knew... but now I do...”
The term Death literacy like Health Literacy acknowledges that knowledge has an impact on well-being.
So while this research brought to life the so called “ordinary” tasks of caring for people who are dying at home, it also highlighted how much knowledge about death and dying we are losing as a community. This point was amplified this weekend in the Sydney Morning Herald Series: The End, which includes an excellent suite of articles and multimedia presentations about the end of life in Australian Society.
A couple of facts that stand out:
- Intensive care beds and interventions are increasing and more of us are dying surrounded by technology
- By 2030 there will be 8 deaths per 1000 and 10 years later this will be almost 10 per 1000. (it’s currently 6.5 per 1000)
So... Are you death-literate? And if so…
Where have you gained your knowledge about the dying process?
What knowledge and skills did you learn as a result?
And if not:
Do you know where to get information about caring for a dying loved one?
Do you know what to do if a loved one dies expectedly at home?
If you needed to organise a funeral would you know where to start?
Who are the friends, family and community that you can call on for support?
Have you discussed your personal wishes about aged-care (in home or not), organ donation, and your advance care plan with family?
At GroundSwell we are interested sharing, promoting and undertaking community programs that are demystifying death and end of life practices. We encourage you to think about how you might develop your knowledge and know-how.
This post by Kerrie Noonan, was first published in December 5, 2010.
Interested in death literacy? Working to build death literacy in your community? Get involved in Dying to Know Day by running an event and encourage others in your community to learn, talk and plan for dying, death and bereavement. Attend our death literacy conference on September 6th too!