Bringing Our Dying Home Launch Final

8/3/2019 Bringing Our Dying Home Launch Final

1/23

Bringing Our Dying Home:

Creating Community at End of Life

A joint project of the Social Justice and Social Change Research Group,

University of Western Sydney; HOME Hospice; Cancer Council of NSW


2/23

Background

We know that most people (approx 80%) want to die athome yet only 16% of people get to do so

At least one Generation hasnt seen care of the dying

mum did not think she was allowed to die at home shethought she had to go to the hospital to die

The majority of deaths in this country are expected

Most people dont like to talk, think about or plan for

dying and death
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3/23

What if we had a national

conversation about place of deathwithin the framework of social

justice?


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Bringing Our Dying Home:

Creating Community at End of Life?

How do we move away from

deficit based research and illuminate

the space of the possible? (bell hooks 2003:xvi)

What does it take for someone todie at home?

What are the stories of ordinary people

who have supported someone to die

at home?

How can we enable people to

talk to us about difficult things?


5/23

Aims

To understand how being involved in caring for someonedying at home impacts family, friends and the widercommunity.

To collect narratives of caring networks about the qualityand effect of social networks that are established, orstrengthened, as a result of a person dying at home.

To contribute to knowledge about a community

development approach to end of life care.

To provide the basis for application to the competitivegrants scheme to further develop this research.


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Methodology/Methods & Participants

Inclusive in-depth qualitative research

Focus groups, interviews, workshops

Photo voice Network mapping

96 people aged 7-90 (plus 4 dogs!)


7/23

Each and every one of you

had this little part to play

Without exceptionparticipants said that ittakes a community ofpeople working together

These communities, orcaring networks,comprise anextraordinary set of

complex relationshipswhich are continuouslynegotiated during theprocess of caring


8/23

You were the core team, the inner,the absolutely-there ones... doing the

hard work.

Then theres the next layer who areencouraging, affirming, being asounding-board, doing some of thework, providing food, reflecting,

driving, shopping, that kind of thing.

Then there are these people who canbe strangers... that come in [with]the medical information andassessment, the practical equipmentand know-how and the respite if thesecond layer are not available or aretired... And the spiritual care andinspiration


9/23

Resisting isolation and staying connected:

Enablers of caring networks

People resisted potential isolationand social exclusion by:

working hard to stay connected

using clear and controllablecommunication

drawing on previous experiencesof being with a dying person

humour and remaining light-hearted


10/23

Joy

I called it Joy for a couple of reasons. One was that a groupof us school mum friends had come to be with Jill becauseshe couldnt come and have coffee. We had a routine .so wehad come and I did some scone making lessons which washilarious because I cant cook... So that was part of it and theother part was Caths response to the smell of that...


11/23

Being light hearted

There was lots of laughterand lots of story-telling. Itwas very noisy; it was likebeing in the middle of ahen-house

A lot of people would thinkthat you were being veryirreverent and laughing

...but we couldnt helpourselves. You have to seethe funny side... It was likea release valve


12/23

The agency of the dying person

I dont feel like Im dying, Im just slowingdown. I like the fact that there are so manypeople that it keeps (them) light

We had happy hour at six a clock at herbed...and everyone knew that that was thegood time to come. So they would all walkin get a glass of wine and come and sit bythe bed and Mum used to wake up andmake sure my glass...She loved the fact thatI was being nurtured and looked afterbecause I was caring for her


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The ordinary becomes the extraordinary

Everyone doing a little bit makes a broad

and strong net

Here we found an overwhelming diversity of

caring tasks people engaged in. Providing what

was actually needed, not what people assumedwas needed, was the key to successful support.

The main motivation for the tasks peopleengaged in was to keep life as normal as possible

for the primary carer and immediate family.


14/23

I suppose you think its just aneveryday thing, its just what you do

to help, you dont think of it as a

chore. And all those ordinary things

done to help add up to something

quite extraordinary

She didnt need massage or

meditation lessons she just needed

firewood


15/23

Its a process of transformation:

Developing death literacy Being part of a caring network was, without exception,

transformational at individual and collective levels.

People developed knowledge and skills about caring and

about the process of dying that empowered them andwhich many took into other networks and communities.

Social capital was increased as a result of caring and thecommunitys capacity to care improved.

Individual and collective death literacy developed as aresult of their experiences.


16/23

It was a joy and a privilege

Transforming the literature through alternative stories

of care

There is this joy that iswithin this householddespite grey hollows

Theres something thatthe space was alive with:love, light, mystery... andso I really enjoyed that

I dont know how youcan think that somebodybeing so sick was special

but it was very special


17/23

Transformative effects on individuals: Developing

knowledge and skills

I was giving Joan, who had apercutaneous endoscopicgastrostomy which is known as apeg tube inserted in herstomach... That, I regarded in

many ways, as one of thegreatest privileges of my life, thatI could administer that, do iteffectively in accordance withwhat medical needs there were

Ive grown a lot or learned a lot all the stuff I know now that Ihad no idea about. Makes areally big difference


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Changes in attitudes to death and dying

My children were with meand my husband when hedied. We were all there

and when I said, Dadsgone now, they said, No,he hasnt, he hasnt cos helooks just the same. But hehad you see and they were

surprised because theydidnt know what theyexpected but they didntexpect it to be so normaland his death was actually

easy

Ri li D l i i


19/23

Rippling out: Developing a communitys

capacity to care

[we want to] help everyoneand anyone to draw supportand information from Lornasand my experiences

Im very proud to see her as anadvocate for other people andusing her experience to be anenabling thing in communityfor others

The stuff that you taught me Iwant you to know that Ivebuilt myself up a lot in caringfor my old people at work


20/23

How the networks changed

Before caring After caring


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Look at the connections there are

millions of stories!

Well the community has got together.

Friendship. Its not just weve done a good

deed and now its the end of that. Weve

actually continued the friendship

afterwards... In fact she and her husband and

son are still very close friends and we do seeeach other socially and keep in touch


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Looking forward

Its about the community caring

Caring for someone to die at home must be

one of the hardest jobs there are. But

ordinary people do it and they can do it well.


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What's needed?

Establishing, supporting and negotiating informal supportnetworks is vital for the sustainability of the growing home deathmovement in Australia.

Carers need permission and practical hands on help to gathercaring networks together and to negotiate the type of help theyneed.

Organisations and services that provide paid care at end of life

need to take an active role in promoting death literacy andsupporting informal caring networks from a communitydevelopment or health promotion perspective.

Documents

Bringing Our Dying Home Launch Final