practical living
benefits: it increased awareness among the young students of the
issues around terminal illness and dying, and at the same time it
provided company for the patients.
Volunteer care programs, where locals are trained in the care
of frail and vulnerable people, are also encouraged, and increased
social interaction and care were shown to reduce panic and anxiety
among patients.
These ideas are part of the compassionate community model that
is gaining traction in Australia. Kerrie Noonan, co-founder of the
GroundSwell Project, has been involved in implementing these ideas
in eight communities across Australia, and she and compassionate
communities project lead Holly Rankin Smith spoke with Aged Care
Insite about the project.
ACI: Kerrie, can you explain what the GroundSwell Project is?
Death literacy
KN: It’s a social change organisation. We’re not for profit, and we
work to build death literacy in the community. We do that in a
number of ways, but one of the primary ways is by working with
communities doing Compassionate Communities work and other
kinds of change work in aged care and hospitals.
What is death literacy?
Death literacy came from a body of work that has been done at
Western Sydney University looking at what happens when people
come together to care. One of the key findings of that research was
that people were learning about end of life, and end-of-life care, and
learning how to care for each other, while they were also caring for
someone who was dying. It just kept coming up in the findings all of
the time. We called that collective learning, or experiential or real-
life learning death literacy. It’s about the skills and knowledge that
people learn as a result of caring.
Is this something we’ve lost as a culture?
How community engagement can help improve
people’s knowledge of end-of-life care.
Kerrie Noonan and Holly Rankin Smith
interviewed by Conor Burke
I
t has been suggested that the Western world has lost its ‘death
literacy’ as we increasingly look to outsource end-of-life care to
businesses. A new public health approach to palliative care has
been put forward as a compassionate alternative in end-of-life care.
Based on the work of Professor Allan Kellehear, a medical and
public health sociologist, this new approach encourages ordinary
members of the community to adopt the stance that health is
everyone’s responsibility. This idea was evident in the 1970s and ‘80s
when the community was tasked with discouraging others from,
among other things, harmful substances, unhealthy eating habits
and unsafe sex.
Kellehear and other health professionals suggest we can apply
this approach to end-of-life care in a number of ways. Community
engagement can help reduce the burden on palliative health
professionals and therefore improve their work.
Moreover, those with terminal illness can often encounter anxiety,
depression, social isolation, family breakdown and a litany of other
problems, and promoting wellbeing through engagement with
local schools, businesses and workplaces can improve a patient’s
wellbeing immeasurably.
St Christopher’s Hospice in the UK enlisted the help of school
children to visit those approaching the end of life, with twofold
24 agedcareinsite.com.au
Yes, we have. I don’t think we meant to, but I think the economic
and social changes that have happened over the past century or so
means that many of the social processes and rituals around dying,
death and supporting each other in small communities just changed,
because of the way society changed. Death literacy was probably
more embedded in our communities, like we kind of knew what to
do. We had different social norms about helping and supporting
each other in times of crisis.
But certainly one of the things that has happened in the last
decade is a sense of reclaiming communities and individuals, and
health services asking: “Well, these everyday knowledges and
everyday thinking around death and dying, how do regular people
start to reclaim some of that?”
There are different ways of doing it, but one way is working
with regular people in communities, hospitals and other places.
We’ve certainly lost some of our skills around how to care for, say,
someone who’s dying or someone who’s died. For example, we
don’t care for dead bodies at home like we used to.
Now I’m not saying everyone necessarily wants to do those things,
but when people find out that it is possible to care for their dying and
dead at home, it’s often quite a shock for them.
Can you expand on the idea of Compassionate Communities?
It’s part of the new public health, which means that we take a whole
systems approach to health. Health isn’t just the absence of disease,
health is socially determined. Evidence shows that health is impacted
by social determinants such as where you live, what language you
speak, what country you come from and so on.