Dying

For Change: Innovations at End of Life June 13 2011

Report on Symposium Proceedings

Dying for Change: Innovations in End-of-Life Care Symposium

At Cancer Council NSW, Sydney June 13 12.30pm -6.30pm

Speakers:
Kerrie Noonan, Director, Groundswell Gill Batt, Director, Cancer Information and Support Services, Cancer Council of NSW Dr Debbie Horsfall, School of Social Sciences, University of Western Sydney. Steve Lawrence, CEO, Australian Social Innovation Exchange Professor Patsy Yates, Vice President, Palliative Care Australia Charles Leadbeater, Demos Institute UK. Heather Richardson, Help the Hospices, via video presentation

Social innovation: A creative community with a cause

Whats our cause? Who is our community? What vantage point shall we take? What question shall we pose? Who and what shall we challenge? What will be our measures of success?

Andrew Horsfall, IQuinity (2011) Dying for Change: Innovations in End of Life Care. Symposium Report.

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 and facilitated by Kerrie Noonan, 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 (see attendee list attached) 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, Demos institute UK, joined the symposium at 3.00. During a dynamic and interactive session 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) 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).

Andrew Horsfall, IQuinity (2011) Dying for Change: Innovations in End of Life Care. Symposium Report.

Presentations Bringing our Dying Home: Creating Community at End of Life

Dr Debbie Horsfall, University of Western Sydney Debbie provided a brief overview of the aims, scope and results of the innovative research Bringing our Dying Home a two year project jointly funded by the University of Western Sydney (UWS) and the Cancer Council of NSW (CCNSW). Using a strengths-based approach the team sought to illuminate the space of the possible (bell hooks 2003: xvi). According to Palliative Care Australia (2011) sixteen per cent of people in Australia do die at home and Debbie emphasised the importance of understanding how this is done and how it impacts carers and the community 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 she said. We know what people want; well we have also found how it can be done and how caring for someone at home benefits the carers and the community. Through focus groups, in depth interviews and workshops the team collected visual and oral narratives from 96 people who had been, or were, part of informal caring networks. They found that caring for someone at home involved the creation of complex webs of relationships as well as resistance to Western, institutional, expert-based approaches to death and dying. This research found that being part of a caring network was, without exception, transformational at individual and collective levels, and as a result the communitys capacity to care improved. The research clearly demonstrated that caring can, and does, contribute to social capital, with carers and the cared-for being part of a vibrant and growing network of relationships. As such, caring at end of life has enormous potential to increase death literacy, social networks and benefit communities. Looking to the future, Debbie outlined what was needed to enable more people to die at home, from a community capacity building perspective. Establishing, supporting and negotiating informal support networks. This is vital for the sustainability of the growing home death movement in Australia. Carers need permission and practical hands on help to gather caring networks together and to negotiate the type of help they need. Organisations and services that provide paid care at end of life need to take an active role in promoting death literacy and supporting informal caring networks from a community development or health promotion perspective.

Gill Batt (CCNSW), in her introduction, announced that the team had recently secured $241, 000 in the form of an Australian Research Council (ARC) grant to extend the research. This demonstrates the success of the preliminary research. The clear need for further innovative research in this area is fully supported by CCNSW, UWS and the government. The research report, Bringing our Dying Home, was released on the day with attendees receiving a copy. Further copies can be downloaded from www.cancercouncil.com.au. Debbie can be contacted at: d.horsfall@uws.edu.au

Andrew Horsfall, IQuinity (2011) Dying for Change: Innovations in End of Life Care. Symposium Report.

Social Innovation
Steve Lawrence, CEO, Australian Social Innovation Exchange Steve began by describing his personal imperative for change in the palliative care sector. He then provided an overview of the concepts of Social Innovation which he encapsulated as: identifying a new social problem, need or opportunity principally with a social rather than commercial purpose. Steve emphasised the need to systematically pinpoint problems and focus on barriers including the concept of wicked problem.
Steve overviewed three key issues in changing the palliative system in Australia:

1. Tackle the disconnect between whats possible, whats desirable and what is provided. 2. Reduce the waste and services that are not needed. 3. Work out cost benefits. In changing the world of palliative/dying care were just not well enough equipped. And where do we start? he asked, going on to discuss the necessity to finding allies within your own organisation and other organisations you deal with and starting with something that is winnable. He emphasised the concept of disruptive innovation, technologies and organisations in finding a better way to work. He described the necessities of radical efficiency and for patient-driven communities in end of life care. He demonstrated and identified real examples of organisations changing paradigms and designing systems changes, especially in the area of social networking and virtual communities. Innovative examples included: PatientsLikeMe (http://www.patientslikeme.com/)
PatientsLikeMe is committed to putting patients first. We do this by providing a better, more effective way for you to share your real-world health experiences in order to help yourself, other patients like you and organizations that focus on your conditions.

Institute for Healthcare Improvement (http://www.ihi.org/ihi) IHI is a small organization with a big mission. We welcome anyone committed to improving patient care to get involved in our work. Participle (http://www.participle.net/)
At Participle, we do two things: Firstly, bring together the widespread community level ideas and creative activity, and mix it with world-leading experts in any given field; Secondly, drive forward thoughts and actions around developing a new social settlement which can deal with the big social issues of our time.

Think Public (http://thinkpublic.com/)

We are a social design agency that helps tackle big social challenges. We work with the public sector, third sector and communities.

Andrew Horsfall, IQuinity (2011) Dying for Change: Innovations in End of Life Care. Symposium Report.

Current Issues and Challenges for Innovation in the End-of-Life Sector

Professor Patsy Yates, Vice President, Palliative Care Australia
Patsy provided an overview of the latest data and issues in palliative care in Australia including primary causes of death, the nature of end of life care in Australia and Palliative Care Australias initiatives. Palliative Care Australia is focusing on following best practice principles. In this context Patsy provided an overview of palliative care service benchmarks and highlighted the need to focus on the variability of end of life care service results. While a number of services are meeting the standards at 100%, others are only achieving a 20% success rate. Reducing variability then is a key focus of best practice and benchmarking in palliative care service provision. Patsy also highlighted the importance of learning from the services who are achieving 100% in terms of benchmarking, of which there are a significant number. This was a further call to a strengths- based approach to policy development and service provision: identify what is being done well, work out how it is being done and replicate where possible. Patsy went on to highlight key innovations in palliative care centring around; The National Palliative Care Strategy: Supporting Australians to Live Well at End of Life. Significantly improving the appreciation of dying and death as a normal part of the life continuum and enhancing community and professional awareness of the scope, and benefits of, timely and appropriate access to palliative care services. Ensuring that appropriate and effective palliative care is available to all Australians based on need. Supporting the collaborative, proactive, effective governance of national palliative care strategies, resources and approaches. Building and enhancing the capacity of all relevant sectors in health and human services to provide quality palliative care. Palliative Care Australias National Standards Assessment Project.

Andrew Horsfall, IQuinity (2011) Dying for Change: Innovations in End of Life Care. Symposium Report.

Social Innovation and the Dying for Change Report

Charles Leadbeater, Demos Institute UK
Charles was introduced by Steve Lawrence as one of top 30 most influential people in Britain, Charles explained that this came about through a timely congruence of a hairdresser, GQ magazine, an editor and a somewhat lean top 200 list.

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:

Two thirds of people want to die at home but by 2030 only one in ten will

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.

Below are reproductions of the key power point slides used on the day:

There can be no innovation without consumer insight

Dying well: no single idea of the good death but common ingredients in which social factors vital
7

Appropriate time of life Not lingering Degree of control Right relationships Avoiding pain

Andrew Horsfall, IQuinity (2011) Dying for Change: Innovations in End of Life Care. Symposium Report.

Current Service settings in the UK; 1. Hospital; a. Professional, experienced, familiar, 24hr care, Crisis management, Pain relief, Contained. b. Impersonal, cold, Lack of patient control, Focus on conditions not people, Often bad for social, spiritual and psychological aspects of dying, Often very little they can do for people. 2. Care homes; a. Deaths among very old and those with neglected conditions - frailty, COPD - will rise, Vital part of mixed economy of end of life care. b. Variable quality, Low pay, poor training, high staff turnover, Disconnected from medical services, Staff untrained in end of life issues. 3. Hospices; a. Direct services, Philosophy/principles, Community reach, High satisfaction ratings, Source of innovation and expertise for rest of system. b. Cancer specialists when future need in COPD and frailty, Danger of incorporation into system, Public perception at odds with experiences of patients, Many are trying to become less institutional more networked, Hospice as a philosophy more important than hospice as place. 4. Home; a. Place to find intimacy, comfort, autonomy = conditions for finding dignity, Most dying takes place at home even if death takes place in hospital. b. Home caring capacity declined, huge burdens and strains on carers, especially women, Home is changed by dying, carers often get scared and panic, especially when they feel alone. Only 25% said they could cope at home on their own but rises to more than 60% if they were offered proper support. Six in ten people would take a personal budget.

If what we have, what we need, and what is possible are closely aligned scope for innovation is limited When all three change at the same time it creates innovation dynamic
But pointing out that the space is growing is not enough, the point of social innovation is to find ways to fill it as it grows by devising new ways to meet our shared social needs.

The Innovation Space

What we have is not good enough

The Innovation Space Grows

Our needs are changing fundamentally

New ways to orga nise ourselve s are plenti ful

Andrew Horsfall, IQuinity (2011) Dying for Change: Innovations in End of Life Care. Symposium Report.

 Improve; Advanced care plans, Non specialist palliative care, Patient involvement. ButThis is a long haul whats the point of improving how we do the wrong thing? Combine; Discharge teams, Care planners/navigators, Hospice/care home federations, End of Life Trusts. Re-invent; Social spaces close to home, Extra care housing, Home hospices, Start from frailty and COPD rather than cancer. Transform; Not better versions of the institutions we have but a viable alternative to them. Based on a different philosophy: Social approach which draws on medical knowledge

Andrew Horsfall, IQuinity (2011) Dying for Change: Innovations in End of Life Care. Symposium Report.

What would you do to get going?

High system
Efficient but cold

Systems that support relationships

Intimacy at scale

Low Empathy

High Empathy

The worse place to be

Personalised but small scale

Low system
Examples; Grameen Bank, Mothers to Mothers (South Africa)

10

Andrew Horsfall, IQuinity (2011) Dying for Change: Innovations in End of Life Care. Symposium Report.

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. 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. The process of communicating the results of the day was discussed. It was agreed that the report of the day would be posted on the Groundswell web site. It was to be seen as a living report, with people adding to it and growing the discussion. The afternoon concluded with the question: Who is going to move this forward? Kerrie Noonan had initiated and facilitated the symposium and the participants wondered if she would be taking it further. It was felt though, that there needed to be a collective sense of responsibility for taking this forward. Symposium Closed 6.30pm

11

Andrew Horsfall, IQuinity (2011) Dying for Change: Innovations in End of Life Care. Symposium Report.

List of Attendees

Name Adrianne Alexandra Alison Andrew Andy Bicky Bronwen Brynnie Caitlin Catherine Craig David Debbie Georgene Gill Gina Jenny Jill Jillian John John John-Paul Keith Kerrie Linda Margaret Maria Nella Niki Nikki Odette Patsy Paul Peta Peter Pru

Job Title Talbot-Thomson Yuille Chandler Penman Horsfall MacIntyre Binnington Goodwill Sheehan Campbell Boshier Goodhew Horsfall McNeil Batt Svolos Onyx Bruneau Conroy Rosenberg Carrigan Kristensen Foster Noonan Foley Mogg Papastamos Keenan Read Johnston Waanders Yates Simes McVey Cleasby Brewer Clinical Nurse Consultant Palliative Care Nurse Practitioner CEO Professor Director Palliative Care CNC Program Coordinator RN2 Clinical Care Coordinator CEO Dementia Education Consultant Director Family Support Manager Professor massage therapist General Manager Director Bereavement Counsellor Occupational Therapist Educator National Development Manager CEO

Organisation Rigpa Spiritual Care Program Stanhope Health Cancer Council NSW IQuinity Counselling for Living and Dying Clare Holland House

Email atalbot.thomson@gmail.com alexandrayuille@gmail.com alison.chandler@stanhope.com.au andrewp@nswcc.org.au d.horsfall@uws.edu.au bicky47@yahoo.com.au bronwen.binnington@gmail.com brynniegoodwill@gmail.com caitsheehan@hotmail.com nalag@hwy.com.au craig@strategicandcreative.com dgoodhew@anglicare.org.au d.horsfall@uws.edu.au gmcneil@alznsw.asn.au gillb@nswcc.org.au GinaS@mndnsw.asn.au Jennifer.Onyx@uts.edu.au jaya4@bigpond.com jillian.conroy@private-care.com.au john.rosenberg@calvaryact.com.au john.carrigan@bigpond.com

Palliative Medicine Physician NALAG (NSW) Inc. Coordinator Miindala Principle Consultant Assistant Director Chesalon Care Strategic and Creative ANGLICARE University of Western Sydney Alzheimer's Australia NSW CISS, Cancer Council NSW Motor Neurone Disease Association of NSW UTS Private Care Calvary Centre for Palliative Care Research Palliative Care Queensland The GroundSwell Project Southern Highlands Division of General Practice The Canberra Hospital, Chronic Care Program

enquiries@palliativecareqld.org.au prubrewer@yahoo.com kerrie@thegroundswellproject.com linda.foley@sesiahs.health.nsw.gov.au margaret@shdivgp.com.au maria.papastamos@act.gov.au Nella@southernphone.com.au Niki@thegroundswellproject.com

ACT Health Palliative Care Victoria QUT

nikkidjohnston@gmail.com owaanders@pallcarevic.asn.au p.yates@qut.edu.au simes.paul@gmail.com

Hammond Care

pmcvey@bigpond.net.au pcleasby@nsccahs.health.nsw.gov.au prubrewer@yahoo.com

12

Andrew Horsfall, IQuinity (2011) Dying for Change: Innovations in End of Life Care. Symposium Report.

Prue Rachel Rebecca Rosemary Rosemary Sally Sara Sara Sharyn Steve Susan Susanna Suzanne Tim Tina Trish Victoria Virginia Wendy Yvonne Yvonne Yvonne Zenith

Gregory Bilton-Simek Lawrence Leonard Fraser Evans Graham Allen Lacey Lawrence Hanson Lawrence Daly Gregory Howard McKinnon Spence Adlide Wright McMASTER Luxford Luxford Virago Chief Executive Officer Palliative Care Australia Natural Death Centre Secretary Facilitator/Consultant Dr Southern Highlands Community Hospice inc. Mindful Business tina@pkcp.org.au Pmckinnon@stvincents.com.au vicspence@optusnet.com.au adlide@gmail.com wendy@mindfulnessbusiness.net waryvon@tpg.com.au Yvonne@palliativecare.org.au yvonne@palliativecare.org.au zenithvirago@gmail.com GP Self employed sumidal@bigpond.com CEO National Manager Palliative Care ASIX Little Company of Mary Health Care Clinical Coordinator CSRIO Private Care Rosemary.Leonard@csiro.au neilfraser48@optusnet.com.au sally.evans@ampcapital.com s.graham@unsw.edu.au sarah@sarahallenconsulting.com.au lacey1@virginbroadband.com.au steve.r.lawrence@bigpond.com shanson@lcmhc.org.au Palliative care educator Clare Holland House rachel.simek@calvary-act.com.au

13

Andrew Horsfall, IQuinity (2011) Dying for Change: Innovations in End of Life Care. Symposium Report.