Palliative Care Unit Social Network Newsletter August Issue 24

Inside this issue 1. Editorial 2. Compassionate Communities Network 3. Dying for Change Symposium: social innovations in end of life care 4. Death Down Under Conference personal reflections 5. Publication Contact Details

ISSN 1449 - 2776

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Editorial
This 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 Conference that 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 Project writes about the Dying for Change Symposium that 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 surrounding dying, 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 Network Promoting Social Approaches to Dying, Death and Bereavement will 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 D.Morris@latrobe.edu.au

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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 Home research 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 including representatives 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 transformed end 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 Change key 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? Talk is crucial to change and 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 Change report 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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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 sustained, realisable change. (adapted from the Report by Andy Horsfall, Iquninity, 2011)

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

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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

Conferences
Death Down Under Conference personal reflection - Erica Ruck

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.

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. Tis a strange space to attend such a conference 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 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? Issue 24 Death Down Under Conference personal reflection - Barb Young

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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 The first keynote speaker was Prof. Ngahuia Te Awekotuku from the University of Waikato in New Zealand. Currently, she co-leads the Tangihanga Research 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 Victoria Spences presentation on Living with our Dead: A picnic among Friends was an account of an arts focused gathering of community members values remain from the ancient world, and what is happening for Maori today. Ngahuia spoke with great passion and insight. 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. 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

John

Rosenberg

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.

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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 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.

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 obvious that death is an interest of all kinds of groups in Issue 24

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Editor
.

Deborah Morris

d.morris@latrobe.edu.au

Publication Editor: Fran Spain, Administrative Officer Palliative Care Unit, La Trobe University 215 Franklin Street MELBOURNE VIC 3000 Ph: (03) 9285 5259 NATIONAL REPRESENTATIVES Shyla Mills RN, MPallC Ph: 03-9029 3842 mailto:shyla_b@me.com www.glasshalffullprojects.com Will Hallahan Executive Officer Palliative Care WA Inc Ph/Fax: 1300 551 704 pcwainc@palliativecarewa.asn.au www.palliativecarewa.asn.au

f.spain@latrobe.edu.au

Web: www.latrobe.edu.au/pcu

Dr John Rosenberg RN PhD MRCNA Director, Calvary Centre for Palliative Care Research, Senior Research Fellow, Australian Catholic University T: 02 6264 7355 | F: 02 6273 0338 Clare Holland House, 5 Menindee Drive, BARTON A.C.T. 2600 John.Rosenberg@calvary-act.com.au Sue Salau Clarinda Consulting Clarinda@bordernet.com.au 1476 Glenrowan-Moyu Rd GRETA VIC 3675 Ph: (03) 57276304 Mob: 0427379169 Caroline Short CNC Palliative Care Cessnock Community Health Ph: 02 49910355 Fax: 02 49910438 Caroline.Short@hnehealth.nsw.gov.au Jan Obery Social Worker Western Adelaide Palliative Care, The Queen Elizabeth Hospital, 28 Woodville Rd, Woodville South 5011 Tel : (08)8222 6825Fax: (08)8222 6055 Jan.Obery @health.sa.gov.au

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Social Networks Contributions

EnviroSmart Update
For the latest news for EnviroSmart go to http://www.latrobe.edu.au/envirosmart/ If you have anything to contribute to the Social Networks please email f.spain@latrobe.edu.au.

Upcoming Events
PHAA 41st Annual Conference Sustainable Population Health 26-28 September 2011 Brisbane Convention Centre
http://www.phaa.net.au/41stPHAAAnnualConference.php

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