Social Networks July 2011

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Palliative Care Unit Social Network Newsletter August Issue 24

Issue 24

EditorialThis month there is a new edition of Social Networks arriving in your inbox. We hope

that the new electronic format is more accessible and easily shared with your

colleagues.

In this edition there are several conference reports from the Death Down Under

Conferencethat was held in Sydney on the 27th

and 28th

June this year. Erica Ruck,

Barbara Young and John Rosenberg attended and presented at the conference and they share their

reflections with us. Also in this edition, Kerry Noonan from The GroundSwell Projectwrites about the Dying

for Change Symposiumthat was held in Sydney last June. The Compassionate Communities Network:

will be launched at the Palliative Care Australia conference in Cairns next week. Below I have outlined the

common goals of the group and invite you to become a part of this new and developing venture.

The Compassionate Communities Network:

Promoting Social Approaches to Dying & Death and Bereavement

In September 2010, a group of clinicians, health promotion workers, policy managers, academics and

representatives from several organisations, including Palliative Care Australia met at La Trobe University in

Melbourne to explore possibilities for collaboration in health promoting palliative care activities currently

occurring across Australia and ways of advancing these initiatives. They also considered formalising the

existing national network to strengthen collaboration in social approaches to dying, death and bereavement.

The group identified future development opportunities through influencing policy, building partnerships,

demonstrating worth, changing culture and utilising research. They formed the Compassionate Communities

Network and developed a Terms of Reference outlining their common goals, aims and objectives.

Our perspective on end of life issues is that:

it is possible to live and die in ways which are healthy, for health involves capacities to identify and to

realise aspirations, to satisfy needs, and to change or cope with a changing environment

dying and death are to be seen not just in terms of biological processes but as social and cultural

phenomena

many people who live with terminal and advanced illness, their families and carers, spend most of their

time in their communities, and only a short amount of time as patients interacting with the organised

health system and healthcare practitioners


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many people in our community have no experience dealing with the effects of serious illness, death and

bereavement, and may benefit from information and education which equips them with the skills and

knowledge they need to cope with loss and support others

it is possible to reform organizational policies and practices to become more sensitive to the needs of

people living with terminal and advanced illness

public health perspectives and health promotion strategies offer powerful ways in which to conceptualise

and respond to problems and opportunities which confront communities dealing with issues surroundingdying, death and bereavement.

The Aim of the Network is to promote and integrate social approaches to dying, death and bereavement in

the everyday life of individuals and communities.

Our Objectives Are To

identify and promote, leading practices in the field of public health and social approaches to dying,

death and bereavement, and embed these in public policy

lead, advocate for and contribute to, palliative care and end of life social policy

encourage, establish and strengthen partnerships that support community capacity building and

resilience in issues surrounding dying, death and bereavement

further research in the field of public health/social approaches to dying, death and bereavement in

culturally diverse communities.

The Compassionate Communities NetworkPromotingSocial Approaches to Dying, Death and

Bereavementwill be launched at the Palliative Care Australia conference in Cairns on Friday 2nd

September

2011. At the launch an invitation will be extended for all interested people to join this network. A website is

currently under development and we will keep you updated on the development of the Network.

For further information please contact Deborah Morris, Health Promotion Officer, La Trobe University

Palliative Care Unit at [email protected]
mailto:[email protected]:[email protected]


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Dying for Change Symposium: social innovations in end of life care

Introduction

What if we had a national conversation about place of death within the framework of social justice?Dr Debbie Horsfall

The symposium heralded an exciting response to the question above. Initiated by The Groundswell Project,

the symposium drew together a number of death workers, social innovators and the authors of the Bring our

Dying Homeresearch report. The aim was to explore alternatives, innovations and ideas to radically change

the dying experience for people in Australia. 68 people from all over Australia attended includingrepresentatives of some of Australias largest charities, Peak Bodies and health care providers from the

private sector and government services.

The symposium was organised around two guiding questions:

What are the opportunities and barriers to social innovation in End of Life Care?

What would a radically transformedend of life care sector look like in Australia?

Charles Leadbeater, lead a dynamic and interactive session where the following was discussed:

The UK report Dying for Changekey findings and recommendations

Examples of innovations in end of life care

Reinventing and transforming death and dying in the community

Strategies, barriers and opportunities for innovation

The day also saw the launch of the recently published 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 and Cancer Council of NSW.

The consistency of message, timeliness of the Symposium and the sense of imperative was palpable

throughout the afternoon encapsulated by Professor Yates:

Palliative care and aged care should not primarily be the province of the hospital and the acute health care

system, and our continued acceptance of this and of the concentration of health care spending in the last

months of life is no longer tenable. It represents both bad care and a waste of money.(Katelaris) Professor

Patsy Yates (Palliative Care Australia)


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There was intense interest, agreement and debate yet some underlying frustrations that resources for

changes to the dying experience were limited, lacked political will with some disparate silos doing their best

in a broad community unaware of alternate dying experiences, predominating medical paradigms and

inadequate funding. Although it became clear as the symposium progressed that a collective will for change

existed, stories of hope flourished and alternatives abounded.

We need a social approach to dying that supports people to live as well as possible right to the end of life

Charles Leadbeater (Dying for Change, Demos Institute).

Charles opened with a personal story of his parents death and dying experiences which highlighted the

inadequacies of care, information and attention to the dying experience. He stated that in opening up the

issues of death and dying were probably currently asking the wrong questions. He believes it more relevant

to ask how do you live well? Talkis crucial to changeand we need to talk about concepts such as, good

death, and living well so that we can overcome the mismatch of the desire people have to die at home

against those that invariably die elsewhere. The order of priorities according is: Being in the right place with

the right people THEN the medical support. However, dying well is complex, it cant be linear, most people

find it hard to talk about and politicians wont touch it.

Other key points from the Dying for Changereport included:

There are limits of a linear service pathway

approach.

Dying is concentrated among the old. Most people

die over a prolonged period with multiple conditions.

For some people talking is key to good death, for

others not talking about dying is vital.

Group Discussions

Following Charles presentation the participants in the symposium made the following points:

Death is talkable dying isnt.

More funding is needed for change.

We have the money its more about how we redirect it.

Who has the balance of power?

Redirecting resources from inappropriate intensive care.

Creating a coalition of the willing.

Transforming death and dying to being more fun.


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sustained, realisable 11)

Creating intimacy at scale.

If the sole reason becomes money/saving money innovation gets shut down.

The time is right for alliances to grow this.

Lets get a common language.

Consumer voices. We need a voice then we need action.

It was clear that there were a number of attendees who were already innovators in the area of death, dying

and palliative care. Towards the close of the afternoon was also the time when we heard from a number of

them. For example:

Wollongong group innovating with examples of not for profit funeral service.

Byron Bay group providing/facilitating a dying at home service in a home like environment for those

not able to die in their home.

South West Sydney; Camden pilot project.

Several people working at establishing community based hospices.

It is likely that there were even more radical and exciting projects, services and community initiatives that

were being represented. While there was a sense of frustration being voiced at times, the overwhelming

feeling was one of hope and momentum. People were excited by all the islands of possibility that were in the

room. Making these islands visible is a key step in the change process.

It was clear that within the context of partial resources from the margins the main question was: how do we

markedly improve the dying experience? Symposium participants resoundingly agreed on the imperative for

change yet the landscape of change is patch worked with professions, professionals, carers, organisations

and community groups perhaps siloed and alienated from systemic stories, methods and models of

change. (adapted from the Report by Andy Horsfall, Iquninity, 20

Report by Kerrie Noonan of The GroundSwell Project

Kerrie founded GroundSwell after spending 20 years volunteering and working in grief and loss. Kerrie bringstogether her passion for community work, health promotion and young people with her experience as atherapist, researcher and project manager in both health and the not-for-profit sector. The website ishttp://thegroundswellproject.com/Kerrie is Research Coordinator of Creating Community at End of Life Project, University of Western Sydney
http://thegroundswellproject.com/http://thegroundswellproject.com/


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Conferences

Death Down Under Conference personal

reflection -Erica Ruck

The two sessions that stood out for me were both

connected to the people rather than the workers. I

felt this was significant as there seemed to be

quite a number of presentations that were from the

health professionals viewpoint. The overwhelming

message for me was that of the need for death

education, death literacy: or lets do the talking

and listening. We now have a generation in our

country that have not had the exposure to dying,

being with family members who are dying at home

as a part of life.

I was very interested in Bringing our Dying Home:

how caring for someone at end of life builds social

capital and develops community. It was a different

perspective on the burden of caring that we often

hear. Whilst we all acknowledge the huge load

carers can carry and the risks of carers burnout, I

wondered how often we ask carers of the

moments of joy they experience in caring for their

loved one or the support they feel from friends and

family. It was interesting to hear the researchers

findings gathered from the carers.

Personally I was very moved by John Rosenbergs

You can name her: An Australian Womans grief

ritual for her stillborn twin. Johns exploration

turned out to have a personal connection for him

that added to the story rather than detracting in

any way. It was a poignant reminder of

discussions with my own father whose twin died of

diphtheria in 1924 when they were 20 months old.

He told me he still feels like part of him is missing.

Death Down Under Conference personal

reflection -Barb Young

Tis a strange space to attend such a conference

three days after the funeral of your ninety year old

mother and twenty two weeks after your ninety

year old fathers funeral. Was this appropriate

mourning? Will what I hear be painful or joyful so

soon after being with my mother on her final march

to deaths door?


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For nearly three years my parents had lived in an

aged care facility. Heather Tans presentation on

the Impact on Residents of Frequent Deaths in

Aged Care Facilities interested me. Heathers

research highlighted the disparity between the

staff and residents thinking. This resonated with

me as I had often observed how the death of a

resident was handled in the facility where my

parents lived. The issue of privacy frustrated the

process of how a death was announced to

residents; there is an obviously empty chair in the

communal room and at the dining table yet death

appears shrouded in secrecy. A photo of the

person who has died is placed out on the public

entry hall table but this ritual is not seen by the

residents. My parents appreciated being told of a

death by their family. It allowed them to reflect on

that person and what they knew of them as a living

person in the local community.

Karyn McRae presented a researched account of

her personal journey as chief mourner at her

fathers funeral, in the Mana Wahine: The

Gendered Experience of Death in the

Contemporary Maori world. Her story highlighted

the still important tradition of a very social and

public gathering of community members around

the family member to support the bereavement

experience. This made me think about our familys

grapple with funeral planning and search to find

those others who could help guide the way.

Victoria Spences presentation on Living with our

Dead: A picnic among Friends was an account of

an arts focused gathering of community members

in a Sydney public park. The occasion was to

acknowledge what our dead continue to offer to

our lives. This for me was a positive affirmation of

the health promotion in palliative care work

happening here in Victoria.

Death Down Under Report JohnRosenberg

I was fortunate to attend the

inaugural Death Down Under

conference at the University of

Sydney on 27-28th June this

year. Similar to the Death, Dying

and Disposal conferences in the

UK (and now Europe), DDU1 was a gathering of a

broad audience to promote the dissemination of

social aspects of death studies research in

Australia, New Zealand, and the wider Pacific

region.

The first keynote speaker was Prof. Ngahuia Te

Awekotuku from the University of Waikato in New

Zealand. Currently, she co-leads the TangihangaResearch Programme, which involves a broad

team of community elders, ritual experts, funeral

practitioners, palliative care people, postgraduate

students, and traditional scholars. The project is

concerned with the Maori experience of death,

grief, and dying; what customary practices and

values remain from the ancient world, and what is

happening for Maori today. Ngahuia spoke with

great passion and insight.


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Dr Helen MacDonald was the second keynote

speaker. An ARC Future Fellow at the University

of Melbourne and an award-winning historian,

Helen investigates how human remains are turned

into anatomical objects in hospitals, research

facilities and museums; why unethical uses of the

dead have not historically been successfully

deterred by law; and the histories of human

dissection, post-mortem examinations and organ

transplants. Helens presentation was an

intriguing insight into the history of the utility of

human cadavers.

I was selected to present my original paper You

can name her: an Australian womans grief ritual

for her stillborn twin, the story of one womans

journey to tangibly mark the memory of her largely

ignored stillborn twin sister. I also particularly

enjoyed the panel discussion, What does it mean

to die with dignity with representatives from

palliative care, euthanasia law reform, and a

transplantation researcher. Of greatest interest to

me was a presentation from a counsellor who

works with children bereaved through murder or

suicide of a primary family member a confronting

and challenging job which he explored intelligently

and compassionately in his presentation.

The program included many more presentations,

and some of these were covering familiar territory

for me. Yet the examples above demonstrate the

greatest appeal of DDU going to a conference

about death and dying that is not dominated by

palliative care, or clinicians, really makes obviousthat death is an interest of all kinds of groups in

the world. Clinicians, including palliative care

professionals, were certainly represented; so too

were historians, sociologists, anthropologists,

archaeologists, psychologists, and so on. It is an

opportunity for someone like me, working in

palliative care, to see how other people engage

with issues of death and dying. The opportunity to

mix with, as well as hear presentations from, these

colleagues was highly valuable.


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.

Editor Deborah Morris [email protected] Editor:

Fran Spain, Administrative Officer [email protected]

Palliative Care Unit, La Trobe University215 Franklin StreetMELBOURNE VIC 3000Ph: (03) 9285 5259 Web: www.latrobe.edu.au/pcuNATIONAL REPRESENTATIVESShyla Mills RN, MPallCPh: 03-9029 3842

mailto:[email protected] HallahanExecutive OfficerPalliative Care WA IncPh/Fax: 1300 551 [email protected]

Dr John Rosenberg RN PhD MRCNADirector, Calvary Centre for Palliative Care Research, Senior Research Fellow, AustralianCatholic University

T: 02 6264 7355 | F: 02 6273 0338Clare Holland House, 5 Menindee Drive, BARTON A.C.T. [email protected]

Sue SalauClarinda [email protected] Glenrowan-Moyu RdGRETA VIC 3675Ph: (03) 57276304Mob: 0427379169

Caroline ShortCNC Palliative Care

Cessnock Community HealthPh: 02 49910355 Fax: 02 [email protected]

Jan Obery Social WorkerWestern Adelaide Palliative Care, The Queen Elizabeth Hospital,28Woodville Rd,Woodville South 5011Tel : (08)8222 6825Fax: (08)8222 6055Jan.Obery @health.sa.gov.au
mailto:[email protected]:[email protected]://c/Documents%20and%20Settings/FSpain/Application%20Data/Microsoft/Word/www.glasshalffullprojects.comhttp://c/Documents%20and%20Settings/FSpain/Application%20Data/Microsoft/Word/www.palliativecarewa.asn.aumailto:[email protected]:[email protected]://c/Documents%20and%20Settings/FSpain/Application%20Data/Microsoft/Word/www.palliativecarewa.asn.auhttp://c/Documents%20and%20Settings/FSpain/Application%20Data/Microsoft/Word/www.glasshalffullprojects.commailto:[email protected]:[email protected]


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EnviroSmart Update

For the latest news for EnviroSmart go to

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Social Networks Contributions

If you have anything to contribute to the Social Networks

please email [email protected].

Upcoming Events

PHAA 41st

Annual ConferenceSustainable Population Health26-28 September 2011Brisbane Convention Centre

http://www.phaa.net.au/41stPHAAAnnualConference.php
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