practical living
Also, the other key thing that people like
Allan Kellehear often talk about is the 95
per cent rule, so that 95 per cent of our
experience when we’re dying or grieving
is actually with our communities. It might
be also by ourselves, but it often happens
outside of institutions. It happens with our
friends, with our families, with ourselves. Five
per cent of the time we are connected to
health services, and we need those health
services. We need compassionate care from
doctors and nurses to support us as we’re
dying, because we often need symptom
relief and other things.
But what the public health approach
does is try to give a bit more space for
the social, because what we primarily
do at the moment is think mostly about
service delivery. So the Compassionate
Communities movement is really thinking,
“Okay, how does everyone have a role in
end-of-life care? How does everyone have a
role in grief and bereavement?”
When we start to think like that, we start to
think, wow, there are schools, workplaces,
councils, sporting clubs, RSL clubs – there
are all kinds of rituals, care and support
going on in our communities that may not
have the goal of supporting people after
death, but every day those places step up
to support people during illness, at time of
death, and after that. They’re often there
for longer, as well. If you’re a member of
a sporting club, for example, you’re still a
member while you’re caring for someone
who may be dying, and you’re still a member
after that person dies. So that sporting club
and those people you’re connected to are
an important part of your grieving process.
The Compassionate Communities
movement would say, “Okay. How is that
sporting club supporting the person who’s
grieving?” And there would be heaps of
things they’re doing. We want to bring that to
life a bit more and acknowledge that we’re
all caring for each other. We’re all actually
stepping up and taking responsibility.
Over the last year, GroundSwell has
been implementing this concept in eight
communities around Australia. How does
that work practically, and what reactions
have you seen with the project?
We really act more like a backbone to
those communities. We put a shout-out to
Australians to our networks and to other
people who we know are starting to get
interested in Compassionate Communities’
work, who were just starting to dabble in
it or who actually were already down the
track a bit. We said, “Well, we’ve learnt some
stuff from the UK and some of the work
they’ve done supporting communities. We
would love to see more Compassionate
Communities stuff grow in Australia.”
As a result, we offered eight communities
additional support, and we did that along
with Western Sydney University.
We’re learning lots of things. One of the
key things is that there are many people out
there who want to help. There are many
people out there who want to see change
in the way we do death and dying. And
everywhere that has started Compassionate
Communities’ work has had a community
either rise up again, because they’re
already kind of connected with the local
organisation who got involved, or a new
community has started to take hold and start
to think about end-of-life care and how they
do it best in their local area.
There’s been a real variety of projects, and
all of them have, over the past six months,
invited people to come together and talk
about it as a local community issue. It’s been
pretty interesting watching that happen
across Australia.
I believe Bupa was involved in this
scheme. Have you seen any interest from
the government?
The important thing to acknowledge is that
there are lots of initiatives going on around
Australia, that we aren’t the only organisation
who support this work. Earlier, I think last
year, the federal government funded some
of the primary health networks to do some
Compassionate Communities work, which
has been an important development in the
space. Yes, Bupa has supported this initiative
over two years, which has been amazing.
It really has been a champion of our
grassroots work, which is quite something
for a healthcare organisation.
I think there’s change happening all
around, and that’s really important to
acknowledge, that it’s not just eight
communities who are doing this work.
It is happening all over the place. Some
of it might be called Compassionate
Communities and some of it might not be,
but there is a massive groundswell of interest
in end-of-life care and support, and how
we’re going to change this experience for
people in the community.
Is this only applicable to palliative care,
or can we transfer some of these ideas to
aged care and increase elder literacy?
Many of the initiatives are happening in aged
care facilities. We currently have a project
with Southern Cross Care that is about
embedding community into an aged care
facility to a greater degree. When someone
moves into an aged care facility, they often
lose their relationships, and they lose many
of the things they love. That’s a massive
loss. One of the things we’ve been working
on with Southern Cross Care is, “Well,
how can some of those relationships and
connections be maintained despite moving
into an institution?” That’s been really
interesting work. I think next year we’ll have
some interesting things to say about that.
Holly, you’re GroundSwell’s national
lead of the Compassionate Communities
Project, and you’re involved in
implementing some of these concepts
in eight communities around Australia.
Can you tell us more about that?
HRS: GroundSwell is looking at the
landscape of this work in Australia and
recognising that it’s emerging as quite a
viable strategy with which to implement
public health palliative care. There are lots of
examples of the work in the UK and Canada
and in different parts around the world,
but we decided we wanted to invest in that
work here. So, how can we best support the
movement to grow in Australia, and how can
we learn from it?
We launched the national Compassionate
Communities forum, and it’s a bit of a
practice group, I guess. A network of
different communities around Australia
that are giving it a go, and seeing what they
discover, and what comes up as a challenge
or pushback.
That’s been going now for about six
months. We launched in March and invited
expressions of interest. We got about 30
different applications to be part of it. So that
was pretty encouraging for us just thinking
that there are that many communities in
Australia that are interested and came to
explore the work further. From that 30, we
chose to work with eight. A steering group
made that decision. It was based on having
a wide spread geographically and a diverse
mix of community demographics, so we
could have more diverse results and see
the impact in different ways from different
groups approaching the work differently.
Do you have to approach at a political
level with some councils, or do you base
yourself out of an aged care centre? How
do the practicalities work?
I guess that’s the beauty, and also the
challenge, of Compassionate Communities’
work: there is no proper formula or blueprint
that’s going to be successful everywhere.
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