I can scarce believe it has been so long since our last post. It has been a tumultuous few weeks for our family but I want to share with you some of the good stuff.
You would have seen last week a whole bunch of Facebook posts (for those of you who follow our page) showing you some of the goings on at the 2018 Compassionate Communities Death Literacy Conference in Sydney. I was lucky enough to attend both days of the conference and the launch of their most recent research. What is abundantly clear is that the majority of us have had death experiences… we have experienced the death of someone close, we have sat at their bedside, held caring roles and provided emotional support… we feel comfortable talking about it even… but my experience is, we don’t. At least not without someone pushing the subject.
The conference was wonderful. So many like-minded people in the same room, learning from each other and exchanging ideas… it was always going to be good. I learned to reconsider some of my language around dying and death, I learned a lot from a more medical perspective and compassionate approach to Palliative Care… I spoke to Professors, Doctors, Nurses, Therapists, Doulas, Funeral Directors, Designers, Marketers all these people trying to make a difference in this space.
I also learned about the National Death Literacy Index. This is something being put together by Groundswell and it will be a communal resource of what is actually out there for people to access in terms of information and services. Hats off to the Groundswell team for their almighty work!
I have come away from the conference much richer in knowledge and blessed with yet another perspective with which to think about this work. More than that, thanks to the generosity of those i shared this time with, I have also come away with some lovely ideas on how to bring this to the community in different ways.
My top take homes –
- make a shift from care-based approaches to value-based approaches to end of life care
- we are not normalising death, it is normal… we are socialising it
- some hospitals and institutions are beginning to allow families to take their loved one home – this is encouraging – policies are slowly changing to allow for peoples legal rights
- Frome – community connectors and how it works on the ground. A brilliant example. Read more here – https://www.resurgence.org/magazine/article5039-compassionate-community-project.html
- Compassionate Communities support Compassionate Cities – there’s a Charter we need to be encouraging Councils to adopt
- Aprox 30% of people are receiving futile treatment at end of life that they do not want
- Social change is possible… if there are 24 million people in Australia and approx 160,000 die each year… and if each of those 160,000 has 16 people directly affected around them then that’s 2,500,000 bereaved people each year.. or 5 million ever 2 years… If we can change even some of those experiences then in 10 years we are looking at real social change
- community is everything. most conversations about dying and death happen when you bring family and friends together
- ‘death may not be a taboo anymore but taboos still exist in this place especially in being vulnerable’ – Prof. Debbie Horsfall
- change needs to happen on both levels, from academia, and from the ground. there is room for lived experiences
- change in how palliative care is perceived will change how it is accessed and this will provide better outcomes and experiences
- ‘social relationships are the most powerful tool we have for the longevity of life’ Dr. Julian Abel
- do things with people, not to them
- work on increasing the communities capacity to look after their own – something I am proud to say I think we are already slowly doing
- about 25% of people who die die with cancer, so 75% of people do not and yet Palliative care services are taken up with 95% cancer patients
- Donty tell people what they should do… ‘no one wants to be “should” on’ Eltham Day
Read about Groundswell and their projects, research, and initiatives – http://www.thegroundswellproject.com/
Before flying home, I took a moment to visit an exhibition in Sydney that has me intrigued, called Real Bodies. There’s a little controversy around this exhibition it appears. These are apparently real bodies which have undergone the process of plastination, something I had not heard about. It allows the bodies to be displayed in such a way that they can be intimately examined. I listed to a medical fella explaining the inner workings of the body to his little girl by pointing things our to her… I saw people repulsed and intrigued at the same time. It was fascinating the see what cancer looks like… Incredible to get up close with each organ inside us… this is how we are made! The bodies are intriguing but I had to keep reminding myself that these are apparently real! I wondered, what lives did they lead.. what did they stand for… and how did they end up here? Maybe I should have asked those protestors.
If you would like to know a little more about the technique, you can go here – https://bodyworlds.com/plastination/plastination-technique/