Towards a Compassionate Australia. Professor Debbie Horsfall

Transcription

1 Towards a Compassionate Australia Professor Debbie Horsfall

2 Story: It Takes a Village Jenny Lonergan ITAV

3 As members of the general public and as lay and professional caregivers, we need to acquire end-of-life competence. by working for major systemic change and by performing small, daily acts of kindness and by being available and present when the need arises. The possibility of creating a more compassionate society may sound farfetched, but attitudes and values change over time, sometimes remarkably quickly. Christina Staudt 2013 Whole-Person, Whole-Community Care at the End of Life. American Medical Association Journal of Ethics. Volume 15, Number 12: /

4 Identifying the problem/s Increasing numbers of people dying each year, decreasing unpaid workforce of carers, increasing health costs Not enough community palliative care resources to meet actual or potential demand People not dying or caring in their place/s of choice Community capacity to care diminished due to institutionalisation and medicalisation of caring, dying and death Sector capacity to work with communities and caring networks scant Death and dying has become the experts business rather than everybody's business

5 at the moment compassionate communities are formed of two separate caring networks - the formal and informal with different cultures of practice, languages, motivations for providing care, priorities and goals

6 I never want to go into a hospital... I want to be at home. I want to be around my family and loved friends... and be able to see everything that s familiar (Focus group participant)

7 The social worker told me that it was 85% don t make it back home and I said, watch me. John and I were both in tears. She said, no. It s not going to happen. I said, well what would you like to see happen to him? She said, we ll put him in. If he takes too long to die in the hospice we ll put him in a home. I said watch me do it I think they re trying to save you I understand where they re coming from. They know it s difficult and it is, it is. I mean I waivered more than once but (Focus Group, Regional)

8 A snapshot in terms of home death (and a potential measure of success?) Cost of end-of-life care in Australia $5billion p.a. (5% of the health budget) Less than A$100 million is spent on helping people to die at home. An investment of A$237 million, would double the number of people who are supported to die at home and the same amount could be released from institutional care spending to pay for it.. Hal Swerissen & Stephen Duckett A good death: Australians need support to die at home. The Conversation. September 29, am AEST

9 What does it take for things to change? Research covered 70 countries, encompassed 85 percent of the world s population and was conducted over four decades. In terms of progressive policy change social movements matter. The work of one-on-one organizing, mobilization, advocacy and education makes a difference. The work of groups of individuals not only makes a difference, but makes the difference. More so than having left-leaning parties or more national wealth.

10 Steps in the change process 1. Recognise, identify, understand the problem (deconstruction). 2. Find out what other people are doing, thinking, talking about. Who are your allies? Compassionate Australia 3. Develop a vison, goal, picture of how it could be different and understand the process of change have a goal and a theory! 4. Organise/join/locate yourself as part of a social movement (anyone can join a movement!) 5. Decide on what sort of intervention/s to make or actions to take 6. Take action/s (re-constructions) 7. Celebrate, evaluate, reflect, re-plan Susman & Evered (1978)

11 Social Movements: some shared elements Collective or joint action towards a shared vision Change related goals Requires some organization although not necessarily formal Exist through time/period of time i.e. beyond a single action.

12 What are the alternatives our shared vision for the future? What's probable possible preferable? Look closely at the present you are constructing: it should look like the future you are dreaming. Alice Walker

13 Deinstitutionalised death Death, dying, bereavement and care as everybody s business Every community prepared to help and every service provider supporting them Civic palliative care Whole of community care Network rather than person centred care

14 What will it take? understanding community capabilities and needs from the communities perspective re-directing resources to where people want them changing the dominant narratives about caring and caregivers re-orientating from person centred to network centred care developing sector capacity for community engagement and development developing everyone s death literacy

15 Active Hope: What are the signs of hope that things can or are changing towards this vision? Conferences and symposia such as this Work of people in this room Wicking Trust funding for death literacy Death cafes; Dying to know day, 172 Death Cafes listed for Australia Sydney Morning Herald and Guardian articles on death literacy apparently it s a thing! Increasing numbers of death doulas and midwives Various reports and academic papers and funded research: Dying Well Report (2014); Conversations: creating choice in end of life care (2016); Carers Australia Dying at home: Preferences and the role of unpaid carers (2014) Policy documents such as PCA and various state based ones which talk about community, family and friends, patient preferences The Compassionate Communities movement in the UK. Silverchain

16 Designing change- its deliberate! (Manzini 2013 and Lewin 1940 s) Incremental or radical? Top down or bottom up? Hybrid?

17 What's your theory of Change? Evidence to support your theory? 100 th monkey? Igniting change through peoples stories? Bottom up/community development Get on with it, show how its done and make it contagious? Tipping point Critical mass Advocacy Education, awareness, consciousness raising Coalitions and alliances Strategic alliances not just working with people like us

18 How change can happen: The Transition movement Started in Totnes UK in 2006 Self organising groups arise independently in different communities suburbs, towns, regions, universities - adapted to their particular context. There are over 1200 Transition Initiatives registered in 44 countries 88 in Australia (Jan 2016) Networked structure with national and regional hubs which facilitate resource sharing and communication between local Transition Initiatives. Whole of community approach: working groups such as energy, food, transport, health, local economics, housing, waste, education Reskilling, honouring the elders, working with other groups/organisations/sectors in the community

19 Story: Re-seeding the Parking Lot Mary Hocking Calvary Health Care Bethlehem

20 Brought to you by: Presenter Logo Here Proudly sponsored by: The Compassionate Communities Symposium and Palliative Care Australia are supported by funding from the Australian Government Department of Health.