A report from the Australian charity Groundswell has just been released and it makes fascinating reading. Groundswell is committed to increasing death literacy and it’s best known project is Dying to Know Day.
About itself, Groundswell explains: “An independent charity, we work at the intersection of health care, palliative care and community to develop solutions that address the rising cost of health care, the lack of preparation people make for end of life and the desire for more support and choice in how end of life is managed. Striving for better death experiences in a society marked by low death literacy is a paradox that must shift. Our educational workshops and public health initiatives seek to move the dial on how we as a nation manage end of life.”
So their idea is to help communities to develop better attitudes to death, rather than leaving this to hospitals.
As its 2019 Annual Report noted:
“Death is often over medicalised and institutionalised in Australia and the health care system does not harness the real value of involving family and friends in the process. Because of the lack of options, knowledge, capacity and decision making power, there are often negative repercussions for the person dying and those around them.”
So there’s a consensus by people both in hospitals and in the community that it would be great if responsibility for the way death is managed was shared more openly in our communities and moved away from hospitals.
But of course, trying to address this tends to be circular in our culture. The people who tend to think most about solving the problem, tend to be the teams in hospitals and if they’re always the people who manage the issues that arise, they always will be.
The GroundSwell Project has been active in the growth of the Compassionate Communities movement in Australia.
The term Compassionate Communities was developed by English academic Allan Kellehear in the mid-2000s to describe communities which play a much stronger role in the care of people at end of life.
Groundswell’s “Researching compassionate communities in Australia: a short-term longitudinal study” has just been released, in early November 2020.
It looked at nine communities working to implement the model.
It’s the first pages of this report that are captivating. They talk about four areas of resistance community participants face, when trying to create the ‘compassionate community’ model.
- Questioning legitimacy – when participants question their ability and capacity to take on leadership roles,
- Coming face to face with gatekeepers. “Gatekeeping is a well-recognised strategy used by those with power and control to maintain the status quo…Participants experienced gatekeeping strategies that included obstruction, misinformation, take-over attempts, trivialising, and being disciplined to stay in their place. “
- The work being seen as women’s work – and if it is, does this put the model at risk of becoming exploitative because it’s unpaid people who do it?
- Tensions over leadership – the leader-centric perspective is at odds with the community development goals of participants.
But moving along from the resistance identified, some of the good findings to come out of the report were that there was evidence of changes “in the way communities came together to care for each other in times of need. Participants reported that these changes could be sustainable as they were becoming woven into the fabric of community life.”
So participants described finding there was a positive ripple effect in their work.
The report also noted: “There is a growing body of evidence showing that carers and dying people with active community networks and structural social and legal supports (via workplaces, schools etc.) experience decreased social isolation and fatigue, improved social support. Those who became part of such a community became more confident about asking for help.”
To read, Researching Compassionate Communities in Australia: A short-term longitudinal study by Debbie Horsfall, Helen Psychogios, Holly Rankin-Smith, Niki Read and Kerrie Noonan go to: https://www.thegroundswellproject.com/compassionate-communities-report
The Nepean Blue Mountains Primary Health Network (NBMPHN) has decided to take up the work of compassionate communities. To find out more about its involvement, go to: https://www.nbmphn.com.au/Health-Professionals/Services/Older-Persons-Health/Compassionate-Communities
To read an article by founder of the movement Alan Kellehear himself, go to: https://academic.oup.com/qjmed/article/106/12/1071/1633982