Interactive: Racing Patience - ICU: performative and interactive card game (outside ballroom)
5:30 PM17:30

Interactive: Racing Patience - ICU: performative and interactive card game (outside ballroom)

An innovative and interactive game that simulates something of the rollercoaster of emotions experienced in an ICU setting. Racing Patience ICU inhabits the transdisciplinary sites between science, technology and the arts. In this card game, the patient is comatose and has no agency, no ability to physically instruct the ICU team about their wishes. The characteristics of the end of life within an ICU are often driven by technology, and determined by what it is possible to attempt, not necessarily what is in the better interests of the patient. The process of dying is on occasion reported as excessively prolonged, painful and stressful for patients, families and medical staff.

Racing Patience ICU captures some of the emotions experienced during this anxiety-inducing, incredibly stressful life experience.


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Plenary 5 (Ballroom)
3:30 PM15:30

Plenary 5 (Ballroom)

Chair: Dr Libby Sallnow

a. Why ask if we can’t delivery? Articulating public health palliative care national policy with local practice wisdom to improve genuine choice at the end of life

Andrea Grindrod

Genuine choice for care preferences at the end of life is constrained by many factors. Why therefore, do we ask about end-of-life wishes, when our systems lack capability, and our community capacity is insufficient, to deliver them? To provide genuine choice for people, we need to address systemic inadequacies in both these domains. The systems and sectors that result in poor end of life outcomes can be challenged and reoriented through evidence-based measures, and cultural and societal norms that highlight the value and capability of citizens to engage in caring at the end of life can be re-invigorated.  

A public health palliative care approach based on systems and policy reform and asset-based capacity building strategies can promote societal transformation. Working within systems and policy for sustainable and systemic change is most effective when informed by local practice wisdom gathered from the settings, communities and citizens impacted by such systems. Working across jurisdictions harnesses the strengths, resourcefulness and networks of these assets to build end-of-life capability, capacity and sustainable leadership to complement the contributions of the health sector to end of life care. The task of connecting health and community networks, and of linking systems (vertically) across jurisdictions (horizontally) is of current interest in our attempts to strengthen public health as the central framework for the end of life.   

This presentation will consider frameworks that use a strengths-based capacity building partnership approach to integrate national systems and levels of decision-making bodies with local community infrastructure to develop sound social policies and practice on end-of-life choice.

b. Community participation in palliative care: what have we learned?

Dr Suresh Kumar

The theory, practice and evolution of Neighbourhood Network in Palliative Care in Kerala and community based projects in palliative care at multiple sites in and outside India. The challenges/ successes / failures and lessons. Suresh will detail his experiences from the politically polarised West Bengal, caste divided Pondicherry, Politically distrurbed Manipur, Slums in Bangladesh, challenges in Thailand and a two year experiment in Switzerland in addition to what is happening in Kerala. Suresh will also look at how different platforms for community participation in Palliative Care influence responses from the community and outcomes

c. PHPC: are we pulling the right policy levers?

Kelly Gourlay

The public health approach to palliative care aims to identify negative social determinants of health and use surveillance (evidence) to inform a multifaceted approach to improving the quality of dying. Applying the public health approach to palliative care involves:

•       Public education

•       Programs that support community efforts

•       Policy reform 

Compassionate communities recognise that people at end of life and their families have better experiences and outcomes when health professionals, communities and civic institutions at the local level work together. In Australia, individual communities have made gains towards compassionate communities, however the complexities of health reform requires an understanding of how these collectively fit within the broader health and social services context, and which policy levers are required within a more informed public health approach to palliative care in order to achieve sustainable and significant outcomes.

This presentation will provide a snapshot of the work Palliative Care Australia (PCA) has done to-date, and an overview of policy reform in the Australian context, where

PCA believes quality palliative care occurs when strong networks exist between specialist palliative care providers, primary generalist, primary specialist and support care providers and the community to those living with a life-limiting illness.

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Concurrent Session (Norman Lindsay)
1:30 PM13:30

Concurrent Session (Norman Lindsay)

Chair: Bonnie Tompkins

a. Learning in building connections and partnerships with disabled people

All authors: Tomoyuki Dobata, Chairperson, Toseikai Healthcare Corporation
Satoko Hotta, Professor, Graduate School of Health Management, Keio University

Presenting author: Tomoyuki Dobata

Toseikai healthcare corporation, established at 2013, has seen many disabled children and adult with severe physical disabilities who require home mechanical ventilation. At the time of the 2018, we see 170 patients and visit their home for more than 4,000 times a year.

With our mission: “make a better society with disabled people “, we have tried to build connections and partnerships with disabled people, their family, and their supporters. Also, we have tried to disseminate the current situation of them to all the people by making full use of multiple media.

Future creating school: life-long learning with parents of disabled children; Future creating research: co-creating practical knowledge with people who have bereavement from loss of their children; Future creating university: higher education with disabled people; Publishing a picture book of disabled children and their families; Film-making with a major Japanese film company: a movie of a real man with muscular dystrophy who requires mechanical ventilation.
The elements of learning in connections and partnerships are important for patients, their families, their supporters, medical professionals, and the people involved. Learning makes people compassionate.
Conclusions and application to PHPC:
The element of learning is effective for building compassionate connections and partnership. In 2018, we established Center for Compassionate communities in Graduate School of Health Management, Keio University. We will continue exploring whether it apply to all the people, including elderly and dying person.

b. Victorian councils engaging communities around end of life

Presenting Authors: Jan Bruce and Katherine Wositzky

The ‘Victorian Councils: Supporting Communities Around End of Life Project’ has been exploring how local government can build the capacity of communities to view dying as a natural part of life and to encourage more people to actively participate in caring and supporting people at the end of their lives, at home and in their community. This partnership project between the Municipal Association of Victoria and La Trobe University Palliative Care Unit is in the final year of a three year project funded by the Victorian government. The Project is funded within a Public Health Palliative Care framework, where the concept, understanding and responses to end of life are challenged with the increasing recognition that death a social (not just a medical) event. Understanding death within this social context provides the overarching context of the Project and the reason behind the states investment in exploring the end of life in the local government context. The project has been working through council positive ageing and aged services areas, and builds on the established connection of Victorian councils to their older residents. The project has been well received and many councils have developed initiatives and actions to engage with their community on dying, death and bereavement. A wide range of resources have been developed as part of the project by the project which is now broadening its focus to explore how dying, death and bereavement can be incorporated into local government health and well being planning. This session will outline the project, introduce the resources developed for the local government sector, share learnings, and outline how building the capacity of the local government sector can support local communities to support one another around matters concerning the end of life.

c. Deva Nation USA how will it work in the USA? Piloting the Compassionate Town Charter

Mary Ann Boe

The inspiration and empowerment for Deva Nation to establish a Compassionate Community in Greater Mankato, Minnesota came when I attended the 5th PHPCI Conference. In November of 2017, Deva Nation was granted funding to conduct a six-month community interview process. Over 100 residents shared their experiences of dying and loss. The heartfelt stories that came from these interviews told of a strong need for education and a real desire for the social action necessary to create community capacity to serve those in need. This initial assessment was a vital first step for establishing Deva Nation’s credibility and the feasibility of success for our Compassionate Community.

Phase II of the project was to advance alliances with service organizations, educational institutions and non-profits and produce community events to help normalize conversations about death. These activities culminated in a ‘town hall’ meeting led by an engaging presentation from Dr. Allan Kellehear. We are currently working on Phase III which includes the establishment of a steering committee to guide the implementation our “Kato Towns” Compassionate Community Charter.

We do not have a national health system in the United States that looks after the wellbeing of its citizens. The majority of our health care systems are run for profit. Our national health policies are influenced by major lobbying efforts of the big pharmaceutical and insurance industries. At the city level, policies are largely directed by legislation from the state departments of health. Fortunately, we are finding many innovative state initiatives that share our compassionate community values. It appears that success of the Compassionate Community movement in America will come from community grass roots efforts. We believe that for that success to scale and to be funded, our ‘whole of community’ approach is one that needs to include partnerships at both local and state levels.

d. From problems to possibilities: Appreciative inquiry enables partnerships in compassionate communities

All Authors: Ms Wendy Gain, Independent Consultant, Brisbane
Dr John Rosenberg, Research Fellow, University of Sunshine Coast

Presenting Author: Wendy Gain
‘Community partnerships’ is one of six recommended approaches for developing Compassionate Communities in Australia, but establishing a Compassionate Community won’t happen by accident. Like any attempt to enter a partnership with many players, it can easily become stuck in identifying problems. Knowing the hurdles to come is essential, but a process that identifies the strengths and capabilities of individuals and communities, services and systems, presents opportunities for developing partnerships to build Compassionate Communities. In this presentation, we explore an innovative practice process.
1. Design a co-created vision from the collective, imaginative and innovative capacity of the group based on past successes, current strengths and future possibilities.
2. Develop an activity plan for partners to follow for the development of their Compassionate Community.
We apply the ‘5D’ process of Appreciative Inquiry to discover the positive experiences and stories of community members and health service representatives.
Discovering personal and organisational stories and experiences highlighting strengths, assets and successes, enables a co-created vision for a Compassionate Community. Using arts media, this shared, desired vision for the future is crafted through creation of an image of a positive future, representing the essence of a ‘provocative vision statement’. It remains an image that guides their vision as partners implement their Compassionate Community.
Conclusions and application to PHPC
Partnership development is complex and not without risk, however the use of AI in the process is transferable to settings where individuals and groups seek to establish and build partnerships. This presentation provides an description of practice of this process which enables the establishment of strength-based community partnerships as a foundation for Compassionate Communities.

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Concurrent Session (Ballroom)
1:30 PM13:30

Concurrent Session (Ballroom)

Chair: Stephen Ginsborg

a. Canada launches Health End of Life Project (HELP) Ottawa: Compassionate Ottawa initiates a community-based, participatory action research project

All Authors: Dr. Pamela Grassau, Carleton University; Dr. Charles Barrett, Compassionate Ottawa; Dr. James Nininger, Compassionate Ottawa; Dr. Arne Stinchcombe, Saint Paul University; Dr. Roanne Thomas, University of Ottawa; Dr. David Wright, University of Ottawa; Dr. Mary Lou Kelley, Lakehead University and Compassionate Ottawa.

Presenting Author: Dr Pamela Grassau

Canada launches Healthy End of Life Project (HELP) Ottawa: Compassionate Ottawa initiates a community-based, participatory action research project.

Canada is in the early stages of adopting a public health approach to palliative care. Compassionate Ottawa (CO), a recognized, volunteer-led compassionate community leader in Canada, partnered with community-based researchers and palliative care experts, to design a comprehensive, participatory, community-based research initiative.

Drawing on the ground-breaking work of the Healthy End of Life Project (HELP) at La Trobe University, CO collaboratively designed a 3-year, pilot project entitled HELP Ottawa. Situated in Ottawa, Ontario (Canada) the overall goal of HELP Ottawa is to develop a Canadian-focused HELP framework that will mobilize more confident, competent, caregiving networks and caregivers to help people living with advanced age, frailty, advanced chronic and terminal illness to receive palliative and end-of-life care at home or in the community. Research sites are two community health centres and two faith communities. HELP Ottawa draws on a comprehensive case study design and utilizes participatory action research (PAR) principles, methods and evaluation components.

Officially launched in February 2019 this presentation will emphasize our overall research design and methods and how we engaged directly within each site with people living with aging, frailty, and illness and their families and networks, a range of health and social care providers, varying formal and informal community and neighbourhood networks, and importantly, local citizens. Concrete steps and practices will be shared which reflect specific research objectives of strengthening community social networks, organizational cultures and linkages with local health services.

Conclusions and Application PHPC
Sharing our initial findings and our lessons on how we developed, partnered and began to implement this work, offers important insights for other compassionate community sites about the collaborative processes and practices which inform community based, participatory, public health approaches in palliative care.

b. Renegade Stories: What are the lessons learnt from people using a social approach to dying, death and loss?

All authors: Dr Kerrie Noonan
Prof Debbie Horsfall
Prof Rosemary Leonard

Presenting author: Dr Kerrie Noonan

Dying well is a social issue, yet there is very little evidence that the social model has been incorporated into end-of-life care practices in Australia. This research aimed to explore the lived experiences of people who, despite the dominant biomedical approach to end of life and deathcare, their work is guided by social or new public health approaches to dying, death and loss.
Critical social science is concerned with questioning dominant ideologies and taken-for-granted assumptions, and giving voice to alternative viewpoints. In-depth interviews were conducted with 12 people (6 institutionally based and 6 community based) who work in end of life and death care. These ´deathworkers´ identified as palliative care specialists, nurses, academics, death doulas/end of life workers, artists, community development workers and death educators. Methods of analysis were informed by a critical and interpretive approach using a six phase inductive thematic approach outlined by Braun and Clarke (2006).
1.Strategies and tactics used for creating social and cultural change are shaped and influenced by workplace setting (i.e.institutional or community) and death literacy

2. The 'siloed' system of end of life care despite its limitations creates 'transitional spaces' that can activate social change practices and activism.

3.Informal or community based work was invisible to the formal healthcare and deathcare systems even though it was practiced across, within, and around all of the silos of care, at any stage of illness, including post-death work in preparation for funeral and burial.
If palliative care and other formal service providers are going to adopt social practices such as compassionate communities, a greater acknowledgement of existing community capacity and informal end of life care is needed. If public health approaches to palliative care develop into a social movement, transformative practice, and emergent leadership is needed.

c. Collective Social Capital: A new model for social capital for end of life care

Presenting Author: Dr Libby Sallnow

An appreciation of the social determinants of health has led to the inclusion of new public health principles and practice within health and social care. End-of-life care has been no exception although there has been little empirical exploration and the approaches remain poorly characterised.

The aim of this study was to explore how a compassionate community project is experienced, what tensions exist, what processes support or impede the work, what specific challenges such a project developed from within the hospice sector presents and what learning exists for the wider field.

A mixed methods study employing multiple methods of data collection was performed. Data collection methods included: interviews; focus groups; participant observation; documentary analysis and service records. Ethics approval was obtained. Data were analysed according to modified grounded theory and using online software tool Dedoose.

Twenty-one interviews, two focus groups and 19 episodes of participant observation were conducted, 11 documents and service data on 180 Compassionate Neighbours and 173 Community Members were also included. Six key actions facilitated integration of new public health approaches with service provision approaches and three underlying drivers underpinning the work as a whole included: altered power dynamics, expression of reciprocity in relationships and the development of agency.

Conclusions and application to PHPC:
This study illustrates the processes at work within a compassionate community project and the importance of redressing the power dynamics existing within traditional provider-recipient relationships. The equity created allowed for reciprocal relations to emerge between participants both within the project and between the community and the hospice. The new term ‘collective social capital’ captures this new learning and provides novel perspectives on the role of reciprocity and interdependency between the lay and professional worlds and opportunity for a reflexive and critical dialogue to take place between partners.

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Concurrent Session (Auditorium)
1:30 PM13:30

Concurrent Session (Auditorium)

Chair: TBA

a. Kia korero: Let’s talk is the first public facing advance care planning campaign in Aotearoa New Zealand

Clare O’Leary

b. Living well right up to the end: Journeying towards Compassionate Communities

All authors: Mrs Susan High, Strathcarron Hospice,
Dr Sally Boa, Strathcarron Hospice,
Mrs Marjory Mackay, Strathcarron Hospice

Presenting authors: Marjory Mackay

As a Hospice, we want to grow capacity in our communities to enable people to care for each other in the face of illness and death.
To explore, grow and test community supports and community driven interventions which help people to live and die well.
We started out five years ago by developing a volunteer befriending service to address isolation and loneliness right up to the end of life. We then engaged with people living with long term conditions and their carers in two of our local communities about what mattered to them when their health declined? Listening to their issues led into further work to co-produce a set of resources about thinking ahead, planning for the end of life and how to talk about this with others. We have worked with volunteers to map local community assets, developed befriending from a ‘service’ into a support anchored in communities and co-developed a range of additional community led interventions.
People with deteriorating health, their carers and their communities want to maintain control and choice and help each other plan for the end of life whilst getting on with living. They have clear views and are motivated to try out their own initiatives to support themselves and their wider communities. Examples include community led ‘pop up stands’ about planning ahead; wellbeing cafes; ‘community connector’ ambassadors; communication aids (Talking Mats) for Planning Ahead.

Conclusion and Application to PHPC
People want to support each other and plan for their future in their own way, in their own social context and in their own time.
Providing meaningful and valued support through community empowerment needs to be nurtured to help people to live and die well.

c. The perception of people with cancer on starting conversations about palliative care on themselves: A qualitative interview study

All authors: Kim Beernaert, Anne-Lore Scherrens, Joachim Cohen, Annick Mahieu, Luc Deliens, Benedicte Deforche

Presenting author: Kim Beernaert

Background: Despite the benefits of timely initiation of palliative care for persons with cancer, it is often initiated late or not at all. Communicative behaviours and patient-centered care are both important determinants for timely initiation of palliative care. However, research is barely focused on patients’ communicative behaviours and patients’ perspective.
Aim: 1) To understand and explain the behaviour ‘starting a conversation about palliative care with a health professional’ from the perspective of persons with non-curative cancer by using behavioral theories (eg Theory of Planned behaviour) 2) To formulate a behavioural model for the defined behaviour.
Methods: A qualitative study using semi-structured face to face interviews with 25 persons with non-curative cancer: 13 not (yet) receiving palliative care and 12 already receiving palliative care. Identified determinants related to ‘starting a conversation about palliative care with a health professional’ were fitted in concepts of behavioural theories (eg ‘attitude’ of the Theory of Planned Behaviour).
Results: Some participants were positive and others negative towards starting a conversation about palliative care with a health professional. The oncologists and the family physician were the preferred health professionals. Determinants facilitating and hindering the behaviour were identified: awareness (eg perceived health threat); knowledge (eg about palliative care possibilities); attitude (eg association of palliative care with quality of life or death); social norm and influence (eg the relationship with the health professional); and perceived behavioural control (eg self-confidence).
Conclusion: The identified modifiable determinants of our behavioural model can be used to develop more promising interventions promoting palliative care communication initiated by the patient and timely palliative care initiation.

d. Developing a model of community engagement in a UK hospice: Taking a leap of faith

All authors: Nikki Archer, Supportive Care Director, St Giles Hospice, Lichfield, UK.
Ian Leach, Community Engagement and Supportive Care Manager, St Giles Hospice, Lichfield, UK.

Presenting author: Nikki Archer

Following the launch of Dying Matters in 2009 and growing interest in a Public Health approach to palliative care we took a leap of faith and invested in a Community Engagement Officer. There was little known about a model for Community Engagement in hospices within the UK. After six years of work in this emergent role we have developed a model that provides a framework to demonstrate how our community engagement approach adds value to the work of our hospice and the wider community.
Using the model as a framework, we aim to demonstrate how a community engagement approach within the hospice contributes
• to care
• to education
• to income generation
• to the benefit of the wider community
There has been a four-stage approach to developing our community engagement model.
1. Following appointment, key objectives alongside an emergent strategy were agreed.
2. Four core questions were identified as the foundations for any community engagement project
3. A mix of narrative approaches ran parallel with a mind mapping exercise to track projects and outcomes
4. The model is a result of knowledge gained and reflections on our experience

We now use this model to articulate the benefits of community engagement for our hospice. Examples of this include
• the development of Bereavement Help Points
• a monthly book club for local people, patients and carers
• the delivery of Understanding Bereavement workshops to businesses and voluntary sector organisations
• Using Income Generation events to engage people in Dying Matters conversations

Having developed our model we would now like to share it with others and have an opportunity to have conversations with other looking to build compassionate communities through a public health approach.

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Symposium: The National Compassionate Practice Forum: Developing Compassionate Communities in Australia from the ground up (Oxley Room)
1:30 PM13:30

Symposium: The National Compassionate Practice Forum: Developing Compassionate Communities in Australia from the ground up (Oxley Room)

Title: The National Compassionate Communities Practice Forum - Developing Compassionate Communities in Australia from the Ground Up

In recognising a need to build community capacity for a public health approach to palliative care in Australia, The GroundSwell Project, launched the National Compassionate Communities Practice Forum at the beginning of 2018. This learning network comprising of 8 sites across 5 states has been actively pursuing a community development approach to establish compassionate communities in each of their areas supported by GroundSwell’s Compassionate Communities National Lead and the Caring at End of Life Research team from Western Sydney University.

The GroundSwell Project invited expressions of interest for the forum and received over 30 applications. Of these, 8 community groups were chosen based on their existing knowledge of compassionate communities, investment from their community and a demonstrated understanding of community development principles. The groups have been supported by access to community development support, learning opportunities in research and practice and an online hub to share resources, tools and experiences.

The practice forum set out to learn from the experiences of the 8 community groups in order to inform future practice. The differing geographical positioning, socio-economic and cultural settings have offered insights into the varying roadblocks and challenges that communities are faced with in initiating this work and will be valuable to draw upon as the movement grows across Australia.

This presentation will be the first time the community leaders from the 8 sites will come together publicly to share their insights, the barriers they’ve faced and successful initiatives they have implemented. This will be a unique opportunity to hear real experiences of developing a public health approach from the community members perspective and how we might address some of the issues faced as the Compassionate Communities movement continues to gain traction in Australia.

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Concurrent Session (Bligh/Phillip Room)
1:30 PM13:30

Concurrent Session (Bligh/Phillip Room)

Chair: Rachel Bilton-Simek

a. Straddling the last breath: A reflection of music therapy as an element of change, connection and compassion

Angela Delaney

Music therapy is poised as an innovative allied health profession that offers potential for change and connection. It can shape our experiences as fragile creatures subject to loss, suffering and death, while facilitating connections in deep and meaningful ways where words are insufficient. Death is an experience that is universal, that touches all members of a family. There is both commonality and individuality in the grief experience, and each person reacts differently. A child's death however, is such a devastating loss that exacts an emotional and physical toll on parents, siblings and entire family dynamics.
Using a narrative reflection and case examples this presentation will explore how music and music therapy is able to support the changing connection between the dying and the surviving during the transition between life and death, in a paediatric setting.
Zooming in on the hours immediately before and after end of life, we examine music therapy and its capacity to create compassionate spaces immediately after the death of a child in a paediatric hospital. Detailed process and observations will be described, exploring the scope of practice for music therapists in area.
Conclusion / application to PHPC:
Music is capable of affecting spiritual aspects with emotional needs in health care where medical intervention cannot, and can contribute to the ‘wholeness’ perception of a person. Music therapy approaching, and at end of life is not new, neither is accessing music therapy to support loss and suffering. Music therapy can be pivotal in bringing comfort, resolution and spirituality, while providing a compassionate space as families navigate changing interpersonal connection after death of a loved one.

b. Where heart meets design

All authors: Ms Kerry Dmytrenko, General Manager, Anam Cara House Geelong
Ms Elizabeth Grigg, Principal, Tectura Architects
Mr Serdar Baycan, Director, Tectura Architects

Presenting author: Kerry Dmytrenko

ACHG is a community hospice, providing day and overnight palliative respite and end of life care in a home like environment, staffed by skilled nurses and palliative trained volunteers.

Currently operating as a small service from a historic home we are in the midst of a new service and capital development initiative that is expanding our operations to a 20 bed overnight service plus day hospice and community hub with partnerships in education and community. The new service is located on 2 hectares of open land within the grounds of Deakin University, Waurn Ponds.

The challenge for our architects is to design a home-like, family friendly, human scale experience for guests while meeting acute hospital standards, including infection prevention and OH&S considerations.

Following an extensive period to review the proposed model of care and service delivery, plus briefing of the architects, a number of broad planning design parameters were developed.

Design parameters include separating the residential areas from day areas, with day services providing community, resources and therapeutic services; residential areas are grouped to increase privacy, with a series of intimate spaces and small group spaces for sharing food; a larger communal library is accessible for residential and day guests; and the overall design maximises natural light and horizon views to the natural landscape.

Extensive gardens are designed with a journey in mind and include an indigenous cultural garden as well as natives and exotic species familiar to home gardens.

We are confident we will have a gracious, homelike building that affords opportunities for smaller or larger family groups in a range of indoor and outdoor settings, that meet privacy, comfort and health care standards. Our design process demonstrates the benefits of taking time to reflect and review the model of care and briefing with your architect in detail.

c. Making a place for joy: How design can make people happy (or not)

Ryan Loveday

Connecting with the conference’s themes, this oral presentation aims to discuss the practical relationship between a provider’s philosophy of care and the design of the built environment for the people they serve. We draw directly from our own experience in the design of residential ‘high care’ facilities as case studies; but with wider implications for other care settings.
How will our elders live in future? How do we design to provide for dignity, choice and happiness as we get older? How does that correspond to clinical and allied care services to support that?
Fundamentally, where is aged care design going? What will we be building in ten years?
With a play on words, we address the fact that Joy is an essential emotional aspect of healthy existence, but also a real person with her own history. We go on to try and quantify the elements of joy.
We touch on the design problems posed by loss of agency, depression and dementia. While service models are well intentioned, in practical terms they often manifest as risk-averse and quietly patronising attitudes.
In supporting Joy, we expand on three fundamental ideas worth fighting for, we’ve labelled-
• the blurry edge
• home not hospital
• choice and ‘dignity of risk’
We conclude by tying the building and service design themes together, considering environmental design as a possible threat of restraint, or a facilitator of dignity and choice.

d. Compassion and care through co-design

All authors: Ms Sarah Kaur, COO, Portable
Mr Joe Sciglitano, Design Lead, Portable
Ms Bonnie Graham, Design Strategist, Portable

Presenting author: Simon Goodrich

Portable is a design and technology company that makes change in areas of social need and policy failure. We have recently released a research report into the future of death and ageing in Australia, and we're bringing our human-first approach to this integral social issue.
Co-design, a participatory approach to solving complex social problems, brings together people from the entire ecosystem surrounding an issue or topic. In the spaces of public health and palliative care, this often means putting the recipients of services on the same platform as academics, practitioners and service providers — ensuring that their voice is integral in the design of any solution. Through collaborative activities, solutions can be designed with empathy, which is key to creating lasting, effective outcomes.
Portable has spent years honing the unique set of tools and and methodologies that allow us to practice successful co-design, and are well-placed to invigorate and inspire the primary health and palliative care industry.
In this talk, attendees will learn the value of co-design with real examples from Portable’s research in the death, dying and mental health spaces (including some mistakes we’ve made and learned from along the way) and walk away with a new set of human-centred design tools that will help them bridge the gap between academia, service delivery and those who are affected by end of life.

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Workshop: Building ComCom approach: a practical guide (Misty's Room)
1:30 PM13:30

Workshop: Building ComCom approach: a practical guide (Misty's Room)

All authors: Dr Claire Hepper, Director of Shannon's Bridge
Mr Jeremy McKnight, General Manager of Shannon's Bridge

Presenting Author: Dr Claire Hepper

Shannon’s Bridge is a volunteer driven charity that connects patients and communities with supports and services for end of life care needs. Born in response to a physical and temporal gap in service provision, the charity is named for Shannon McKnight who wanted to be at home when she died. The formal and informal care providers stepped in to ‘bridge’ care gaps to ensure her wish was honoured. Shannon wanted support to be provided to everyone - no matter their postcode. The Bridge team continues the push back against the barrier of service ‘boundaries’ for provision of palliative care.

Our aims include improved death literacy, advance care plan assistance and upskilling communities to provide help in service gaps. Shannon’s Bridge uses the Compassionate Community model to build partnerships and fostering an inclusive space with the ‘End of Life Care Hub’ in Creswick, Victoria. The Hub has a ‘drop in’ ethos to support people who are dying, grieving or caring. By undertaking administration assistance to a wide range of supportive therapies, maintaining a resource library and online social media presence, the Hub keeps the community connected and allows for a continued relationship for bereaved community members when the formal services are discontinued.

From inception of the Bridge model in 2017, local preferred and actual place of death has been matched in over 90% of deaths annually (n=80 2017, n=90 2018). We have trained 152 volunteers, assisted with 94 ACPs, loaned equipment in 50 episodes of care and enabled home-based care to continue for 70 patients.

Shannon’s Bridge would like to share our scalable and inclusive model including resources, a step-by-step set up guide and tips on building connections and partnerships. Join us to go beyond the theory and dive deeply into the practical application of a compassionate model for your community.

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Workshop: Compassionate universities in action. Sharing experiences, opportunities and lessons learned (Macquarie Room)
1:30 PM13:30

Workshop: Compassionate universities in action. Sharing experiences, opportunities and lessons learned (Macquarie Room)

All authors: Benjamin Werrebrouck, Vrije Universiteit Brussel (VUB)
Prof Dr Joachim Cohen, Vrije Universiteit Brussel (VUB)
Dr Kirsten Hermans, Vrije Universiteit Brussel (VUB)
Bonnie Tompkins, Brock University Alumni
Aiman Ali, Brock University Alumni
Hannah Roberts, Brock University Student
Sally Paul, University of Strathclyde

Presenting authors: Benjamin Werrebrouck, Bonnie Tompkins and Sally Paul

A Compassionate University (CU) recognizes that natural cycles of illness, death and loss occur daily within the walls of the institution. Its members acknowledge that caring for each other in times of crisis and loss is everyone's responsibility. This workshop brings together different institutions that are at various stages of developing CU initiatives:
Brock University (CAN) is led by public health students and affiliated with the Compassionate City Charter. The initiative has resulted in engagement activities with the admin, facility, students, and community organizations that have led to a number of social actions, including the creation of a reflective space on campus;
Brussels University (BE) initiated the initiative by applying the Compassionate Cities Charter. A social change coalition consisting of faculties, students, employees, trade unions and the university hospital have designed several social actions for the coming year (eg memorial statue on campus);
University of Strathclyde (UK) has yet to formally initiate the process but has already developed policy and support in relation to carers and plans to extend this to bereavement.

Aims and interactivity
The workshop will share experiences about the process of developing CU’s from the three universities. It aims for mutual learning with the audience about other compassionate communities (CC), to share challenges and successes and promote further advances. Idea generation techniques are applied to develop solutions and select concepts that can be used by participants.

Learning outcomes
We expect that presenters and participants will learn about:
- the challenges and opportunities of creating CU’s
- lessons for and from other CC initiatives
- practical guidance for the creation of a compassionate work environment.

Application to PHPC
This workshop will identify the need for, and significance of, developing CU’s and in doing so motivate more universities to join in and contribute to the global PHPC community development.

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Workshop: Building palliative approaches to care in the inner city: Learnings from an action research project with inner city workers
11:00 AM11:00

Workshop: Building palliative approaches to care in the inner city: Learnings from an action research project with inner city workers

All authors: Dr. Kelli Stajduhar, School of Nursing and Institute on Aging & Lifelong Health, University of Victoria, Canada
Ms. Ashley Mollison, Institute on Aging & Lifelong Health, University of Victoria, Canada
Ms. Shelley Tysick, Palliative & End of Life Care Program, Island Health, Canada

Presenting author: Dr Kelli Stajduhar

Building palliative approaches to care in the inner city: Learnings from an action research project with inner city workers

Background and Aims: Despite Canada’s commitment to high quality health care, health inequities remain a pressing concern. In particular, people impacted by structural inequities such as inadequate housing, racialization, classism, stigmatization of substance use and mental illness continue to experience persistent health and health care inequities and challenges accessing health care services. Access to health care services at the end of life (EOL) is especially problematic for those who are “structurally vulnerable”. Higher incidences of substance use, severe mental illness, and homelessness and unstable housing, contribute to barriers accessing the health services needed to ensure quality EOL care. Building on a three-year ethnographic study to make visible the challenges faced by those who are structurally vulnerable, this workshop will share learnings and preliminary findings from an ongoing participatory action research project aimed at integrating palliative approaches to care in the inner city.

Interactivity: Framed within a model of primary health care, and informed by health equity and social justice perspectives, we will show how engagement with inner city workers (including housing, outreach and harm reduction workers) is a necessary component toward models of equity informed palliative care. The workshop will include a presentation that synthesizes key applicable research. Participants will then break into groups and engage interactive and mixed medium case studies that encourage the application of palliative care principles in inner city settings.

Learning outcomes: We will offer participants: 1) synthesized research on integration of palliative care approaches in inner city settings; and 2) “real world” case studies on strategies and interventions developed in partnership with inner city workers to integrate palliative approaches to care in their settings.

Conclusions and application to PHPC: Participants will hear first-hand accounts from inner city workers about process challenges and successes in reorienting their work toward palliative approaches and what the palliative care community needs to do to fully embrace equity-informed palliative care.

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Concurrent Session (Evans Room)
11:00 AM11:00

Concurrent Session (Evans Room)

Chair: Dr Sally Paul

a. Outside the margins: Palliative and end of life care eduction for homeless support services

Gemma Allen

Background: The CQC report ‘A different ending: addressing inequalities in end of life care’ highlighted homeless people with end of life care needs experience considerable barriers accessing palliative care. Mary Stevens Hospice developed an education workshop for hostel workers, police officers, and local authority teams focussing on palliative care, advance care planning, and accessibility of hospice services.
Aim: Collaborate with organisations who previously had not worked in partnership with hospice, allowing choice and access for people experiencing homelessness requiring palliative care.
The workshop aimed to identify barriers homeless people experience accessing palliative care, engaging seldom- heard communities and identifying training needs for non- health care workers. Lastly Mary Stevens Hospice wanted to develop relationships with local hostel, police and homelessness team , with consideration of developing pathways into hospice services.

Methods: Community engagement with statutory and voluntary organisations, identifying ways of integrating services and up-skilling non health care professionals. A pilot education day was facilitated in July 2018. There was recognition from involved parties the value of working together to better support homeless people approaching end of life. A referrals and signposting database was implemented at Mary Stevens Hospice and workshop feedback evaluated.

Conclusion: Fourteen people attended workshop, including community police, hostel support staff and outreach workers. Attendees reported increased confidence having early, courageous conversations, discussing end of life concerns and priorities. Hospice received first referral and people signposted to services. Advance care planning and Dying Matters events planned.
The workshop highlighted a lack of pathway for homeless people accessing services and a continuation of partnerships, nurturing relations between organisations is necessary to working toward removing barriers to palliative care. Hostel recognised five persons whose health a cause for concern. Police and hostel manager visited hospice and plans for a hospice open day are in development.

b. The Life:Moving Project: Changing perceptions of end of life through film

Dr Michele Aaron and Dr Jed Jerwood

Centred on a six-month filmmaking project based at John Taylor Hospice in Birmingham, UK, this research project investigated the ethical issues involved in representing end of life experience through the medium of digital film. Through workshops and home visits, participants were given practical and critical training and support to develop and co-create their own films. Six films resulted and an exhibition was designed for them and installed at a community space local to the hospice at the end of the project. Subsequently, the films and research have been shared with end of life communities in the UK and Europe where the insights offered into the experience of dying and of end of life care has had a powerful impact upon various audiences, especially within the palliative health community. As well as demonstrating the benefits of such projects for patients and their loved ones and for illuminating the everydayness of dying, Life:Moving reveals the value of Arts practice and participatory research for the end of life community.

The project aimed to challenge society’s misconceptions about terminal illness by providing those experiencing it with the opportunity, skills and platforms to tell their own stories, and by bringing these stories to a wide audience. In prioritising ethical praxis throughout – as the project’s foundations, orientation and ongoing discussion point - the project aimed to counter the pervasive objectification or disregard of the dying within the public sphere. In these ways, the research sought to better understand the potential of digital film to serve the best interests of the vulnerable lives it so often depicts and then disseminates. It also sought to model best practice for the increasing use of filmmaking for creating compassion within public health and palliative care initiatives.

c. The contribution of and support for volunteer palliative care: A survey of volunteers across the health care system

All authors: Steven Vanderstichelen, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)
Prof. Joachim Cohen, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University)
Yanna Van Wesemael, Palliabru
Prof. Luc Deliens, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)
Prof. Kenneth Chambaere, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)

Presenting Author: Steven Vanderstichelen

Volunteers across various health care organizations are an important resource for Compassionate Communities to bridge palliative care (PC)) services and the community. However, to date, no studies have systematically mapped volunteers’ actual contributions to PC provision and how well they are supported by and within different healthcare organisations. Such insights are important in order to shape and optimize supportive environments for volunteering in PC.

To describe current volunteers’ social backgrounds, their activities in terms of tasks, the training and supervision they receive, as well as how they evaluate these in PC.

We conducted a cross-sectional postal survey of PC volunteers in Flanders and Brussels in 2018 using a disproportionately stratified cluster random sample of 2273 volunteers across dedicated and generalist PC services.

Response was obtained for 801 (35.2%) volunteers. Volunteers were predominantly women (75.5%), retired (40.8%), aged 61-70 (46.2%) and had a professional or academic degree (58.7%). Two dimensions in task performance emerged from the data during volunteers’ last session with a patient with serious illness. The ‘multidimensional support’ dimension was mainly associated with dedicated PC volunteers, and represented broad task performance, emphasising psychosocial, existential and signposting tasks. It was associated with receiving structured (p=.001) and group (p<.05) supervision, and extensive training (p<.001). The ‘nursing support’ dimension was mainly associated with sitting services and represented narrow task performance, emphasising nursing tasks. It was mainly associated with receiving training in nursing tasks (p<.001). With the exception of those active in nursing homes, volunteers tended to evaluate their role, training and support as satisfactory.

Results indicate that with training and consistent supervision, volunteers can offer versatile support for patients with serious illnesses. This currently happens in dedicated PC services, however results indicate that volunteers in nursing homes and community home-care may have suboptimal support and training.

d. Educating youth in public health approaches to palliative care

Saif Mohammed

Ensuring comfort , dignity and care based on needs and preferences, during one’s final days still remain a little addressed area. While some countries have achieved affordable access to palliative care, cost effective practical palliative care support still remains a far-fetched dream in resource limited countries.

India has only achieved 1%-2% coverage of palliative care so far. Paradoxically, Kerala, a southern state offers palliative care to almost all. Out of the box thinking to invest in providing resources and education has been an distinctive quality of Kerala. Since last 4 years, palliative care is one of the basic optional skills sets available for children in Kerala. Additional Skill Acquisition Program (ASAP) is a joint initiative of General & Higher Education Departments of the Government to provide skill sets to students along with regular education. The palliative care skilling program as part of ASAP, designed by Institute of Palliative Medicine, is named Basic Certificate Course in Community Nursing and Palliative Care (BCCCNPC).

BCCCNPC consists of 300 hours of theory and practicals covering 1) concept, history, philosophy and fundamentals of palliative care, 2)communication skills 3)common disease conditions and basic nursing needs, 4)home based psycho-social care, head to foot care and symptom management, 5) Pharmacology and 6) seeking expert care. It also includes practical sessions at the palliative care centres and a 20 day internship.

BCCCNPC has so far equipped 670 higher secondary school children in principles and philosophy of care and hands on palliative care. Now, they are active carers in their family as well as in their neighbourhood. Many have developed a liking towards gaining advanced knowledge in palliative care and importantly, many have reported to have gained a better insight into the thoughts and emotions of people suffering from incurable diseases.

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Concurrent Session (Macquarie Room)
11:00 AM11:00

Concurrent Session (Macquarie Room)

Chair: Wendy Pearse

a. Equipping tomorrow’s professional leaders in palliative care to recognise and work with assets beyond the healthcare system

All authors: Louise Hickman
Michelle DiGiacomo
Tim Luckett
Michelle Hrlec
Jane Phillips

Presenting Author: Michelle DiGiacomo
Future generations of interdisciplinary palliative care providers need a new kind of training that emphasises the participatory role of communities, as well as the need to work with patients/families and other health professionals. With a majority of Australians preferring to be cared for and/or die at home rather than in hospital, access to community-based clinicians who understand how to facilitate this is imperative.

To design and implement subjects in a new, online Master/Graduate Diploma/Certificate course to prepare future leaders in palliative care who will drive reforms to improve end-of-life care quality and outcomes, including an emphasis on community-based palliative care.

Communications and public health subjects were designed at the University of Technology Sydney (UTS) in collaboration with leading clinicians, researchers and consumers. Curricula and assessments were enquiry-based and underpinned by frameworks of person-centred care, access and equity, and principles of compassionate communities. Student feedback was sought via a web-based questionnaire following the first semester in Autumn 2019.

Student feedback and the experiences of subject coordinators following delivery of the first two communication and public health subjects will be presented, including student satisfaction, perceptions of acceptability, utility, and engagement. Lessons learnt and suggestions for refinement will be discussed.

Conclusions and application to Public Health Palliative Care
These online subjects are part of the new online Masters of Palliative care that has been designed to prepare students for an advanced level of health care delivery across a range of settings, regardless of geographic location. Graduates of this program will be equipped to drive reforms to improve end-of-life care experiences, with particular emphasis on meeting needs of patients and families and enabling community networks.

b. The impact of online death literacy education for postgraduate psychology students

All authors: Dr Kitty Vivekananda, Carolyn Parratt and Mignon Tucker

Presenting author: Dr Kitty Vivekananda

The impact of online death literacy education for postgraduate psychology students
Promoting better end of life conversations is part of becoming a more death literate society.
This research investigated the impact of an online Death Literacy education module with postgraduate psychology students. Having end of life conversations with both adults and children was examined.
A mixed methods design was used with pre- and post- evaluations of death literacy.
Various dimensions of self reported death literacy increased significantly as a result of undertaking the online module.
Conclusions and applications to PHPC
Psychologist can play a re-imagined role in compassionate communities through their work in school settings and also facilitate more difficult end of life conversations.

c. Grief literacy: Operationalising compassionate communities in the context of bereavement care

All authors: Dr. Lauren Breen - School of Psychology, Curtin University, Australia
Dr. Susan Cadell - Renison School of Social Work, University of Waterloo, Canada
Dr. Amy Chow - Department of Social Work and Social Administration, University of Hong Kong
Ms. Karima Joy - Dalla Lana School of Public Health, University of Toronto, Canada
Mr. Daisuke Kawashima - Department of Psychology, Chukyo University, Japan
Dr. Mary Ellen Macdonald - Faculty of Dentistry, McGill University, Canada
Mr. David Roth - Pütz-Roth Burials and bereavement support, Bergish Gladbach, Germany

Presenting author: Dr Mary Ellen Macdonald

Death and dying are highly medicalized and professionalized in many contexts, generally occurring in hospitals, hospices, and residential aged care facilities. The compassionate care movement challenges the notion that death and dying should be housed within clinical and institutional contexts; further, it works to normalize conversations about death and dying by opening dialogue in public spaces. Community-based practices and conversations about loss and grief still tend to be framed within medical and professional paradigms, however, and remain marginal in this new agenda.

Purpose and Approach
Within the context of an international meeting on death, dying and bereavement, a group of scholars worked to theorize how grief could be better conceptualized and operationalized within the public health framework of the compassionate communities movement.

Together we develop the concept of Grief Literacy. We define grief literacy as an individual’s capacity to access, process, and use knowledge regarding the experience of loss. To illustrate a grief literate society, we developed vignettes to capture variability in the types of loss (death and non-death losses), as well as who is experiencing the loss (e.g., gender, age), who died (e.g., gender, age, relationship) and/or what was lost (e.g., pets, possessions, identity, role), when the death or loss occurred (e.g., time since the death, caregiving period), where the loss occurred (e.g., place of living, surroundings, relationships to other people), and how the person died (e.g., types of death) or the loss occurred (e.g., war). This capacity is multidimensional: it comprises knowledge to facilitate understanding and reflection, skills to enable action, and values to inspire compassion and care. These dimensions connect and integrate via the interdependence of individuals within socio-cultural contexts.

Conclusions and application to PHPC
In order to operationalize grief literacy, social groups need to work to understand the challenges and drivers so that it can be best implemented in our communities. We believe grief literacy augments the concept of death literacy, thereby further enhancing the compassionate communities approach.

d. Life’s questions: Getting our younger generation talking

Presenting Author: Lisa Patterson

Background: Mental Health Foundation reports; "We believe that many mental health problems are preventable, but for prevention to work for children, changes need to take place in our schools, from primary level upwards.
Life’s Questions (LQ) was developed following sessions in schools on Hospice care, volunteering and career pathways where students appeared keen to talk about the impact of death and loss. The Church of England initiative ‘Gravetalk’ which encourages conversations around life, death, funerals and grief became the foundation of LQ, which was successfully piloted with eight students.
Aims: Provide a proactive approach to creating a death literate younger generation with the resilience to support themselves and their peers through conversation and listening. This could in turn lead to a positive impact on their mental health.
Methods: Question cards used with a small group or assembly. A facilitator encourages conversation, debate and listening.
Results: Although in its infancy, attendance to date is 121 adults/school staff, 247 students and 7 awareness sessions to 76 people. Attendees have valued LQ as an open, non-judgemental forum to express thoughts, ideas and experiences, recognising that it is not a counselling therapeutic session. Feedback has included; ‘don’t be afraid of talking’, ‘being able to view things in another way will help me support friends going through grief’, ’I took away it is important to start talking’.
Conclusion: LQ empowers students to have conversations around taboo topics, which supports death literacy in our next generation. It enables them to know it’s ok to talk, it’s ok to be not ok and where they can go for further help. There has been a ripple effect in the community with conversations continuing long after the sessions. This initiative fits in with St Nicholas Hospice Care of creating compassionate communities.

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Concurrent Session (Ballroom)
11:00 AM11:00

Concurrent Session (Ballroom)

Chair: Wendy Gain

a. Specialist palliative care provided to indigenous Australians: Findings from a multijurisdictional dataset

All authors: Dr John Woods—The University of Western Australia
Prof Claire Johnson—Monash University, Eastern Health (Victoria), and The University of Western Australia
Dr Hanh Ngo—The University of Western Australia
Dr Judith Katzenellenbogen—The University of Western Australia
Dr Kevin Murray—The University of Western Australia
Ms Jade Newton—Curtin University and The University of Western Australia
Dr Eva Malacova—The University of Queensland, Curtin University, and The University of Western Australia
Dr Shaouli Shahid—Curtin University and The University of Western Australia
Prof Sandra Thompson—The University of Western Australia

Presenting author: Dr John A Woods

Background: Health service performance influences needs for community-centred end-of-life care. Aboriginal and Torres Strait Islander people have distinctive end-of-life experiences—they develop life-limiting illnesses at younger average ages than other Australians, more commonly reside outside metropolitan areas, and frequently encounter cultural barriers within healthcare systems. Detailed large-scale appraisals of palliative care services for Indigenous Australians are lacking.

Aims: Using multijurisdictional data collected by the Palliative Care Outcomes Collaboration, to compare Indigenous and non-Indigenous patients on (i) representation in care by participating specialist palliative care services, (ii) demographics, residence and diagnosis, and (iii) equity of care received according to benchmark-derived indices.

Design: Detailed antecedent data quality assessment, quantitative cross-sectional and longitudinal analyses incorporating multiple regression and matching techniques to minimise confounding, with multiple imputation to handle missing data.

Results: The dataset (1/1/2010–30/6/2015) comprised 144,951 subjects: 1515 Indigenous (1.1%, much lower than expected from statutory data) and 138,438 (95.5%) non-Indigenous. Patients missing an “Indigenous identifier” (4,998; 3.5%) diminished markedly over the study period, without a corresponding increase in the proportion identified as Indigenous. Indigenous compared with non-Indigenous patients were younger at entry (mean 62.8 versus 73.0 years, p<0.001), more frequently resided outside major cities (45.3% versus 21.8%, p<0.001), with similar proportions having a cancer diagnosis (79.8% versus 79.2%, p=0.567). Indigenous patients more often encountered delays in initiating care episodes (adjusted odds ratio 1.41, 95% confidence interval 1.07–1.86), but did not disproportionately experience occurrence of or delayed institution of management for unanticipated/“breakthrough” problems. Symptom/problem trajectory analyses are nearing completion.

Conclusions/Application: There is no consistent pattern of measurable inequity in palliative care provided to Indigenous patients able to access specialist services. However, considerable under-representation of Indigenous Australians with life-limiting illnesses in specialist palliative care nationwide likely reflects access barriers, underscoring heightened importance in this population of capacity building for community-based end-of-life support.

b. Since Te Kore and Hiringa: The intersect of spirit, landscape and Maori today

All authors: Vanessa Eldridge, Mary Bennett, Tau Huirama

Presenting author: Vanessa Eldridge

In 1907 the NZ Government passed the Tohunga Suppression Act. "Every person who gathers Maoris around him by practising on their superstition or credulity, or who misleads or attempts to mislead any Maori by professing or pretending to possess supernatural powers in the treatment or cure of any disease, or in the foretelling of future events, or otherwise" was liable for prosecution.
Tohunga were the holders of knowledge of most rites, and knowledge in general health and wellbeing, and the use of medicinal plants. The diseases brought with the colonists were catastrophic for Māori and traditional healing, at times, were no match. Alongside the rise of missionary teaching, the power of traditional healers were further eroded. Some Tohunga declined to pass on their spiritual and medicinal knowledge. It hastened assimilation and belief that Māori were ‘a lost race’.
Far from lost, there has been a reclamation of Rongoā Māori (traditional healing practises) in recent years. Practises may involve plant medicine, water, karakia, spirit, energy and hands on body work to support people to heal themselves. Wairuatanga is a concept akin to spirituality and since Te Kore (a phase of creation) it remains vital to Māori.
Four Tides Indigenous healers work from home, clinic and community settings. They plant medicinal trees to ensure they are freely available for public use forever more. Most indigenous peoples recognise the interconnectedness of all things and our responsibility in that. Four Tides will share some of the joys and challenges of establishing and maintaining traditional healing in today’s health settings. They believe Rongoā is the healing intersect of spirit, landscape and the Māori people.

c. The past is present: Death systems among the indigenous Sami in Scandinavia

All authors:

Doctoral candidate Lena Kroik, Dept of Nursing, Umeå University and Centre for Rural Medicine, Sweden
Dr. Olav Lindqvist, Division of Innovative Care Research, Dept of learning, informatics, management & ethics, Karolinska Institutet and Dept of Nursing, Umeå University
Dr Krister Stoor, Dept of Language Studies and Director, Center for Sámi Research, Umeå University
Professor Carol Tishelman, Division of Innovative Care Research, Dept of learning, informatics, management & ethics, Karolinska Institutet, Stockholm Health Care Services, and Centre for Rural Medicine

Presenting Author: Prof. Carol Tishelman

Background /Aim
Kastenbaum’s death system concept examines “the interpersonal, sociophysical, and symbolic networks” through which an individual’s relationship to mortality is mediated by society.” In this research-based presentation, we discuss what we learned of death systems among the indigenous Sámi peoples of northern Fennoscandia and the extent to which Kastenbaum’s conceptualization of death systems is appropriate to Sámi culture.

We were interested in experience-based knowledge about EoL issues among the Sámi. The database therefore consists of transcribed interviews with 15 individuals, Sámi and non-Sámi, chosen for their varied experiences with EoL issues. These were first inductively analyzed using a qualitative approach. Kastenbaum’s model of death systems, consisting of functions along a time trajectory from prevention to social consolidation after death, and the components people, times, places, and symbols/objects, was then considered in relation to these data.

Kastenbaum’s model provided a cohesive framework for understanding aspects of the death system that were Sámi-specific, Sámi-relevant as well as what has been lost and retained over time. However, whereas Kastenbaum differentiated among the components of the death system, we found these were often interrelated among the Sámi. Seasonal changes and relationships to nature instead of calendar time, dominated many aspects of death systems, linking people, places and times. The role of the extended family in enculturation across generations and support throughout the EoL was salient. Numerous markers of Sámi culture, both death-specific and those recruited into the death system, served to strengthen community identity in the EoL.

Conclusions/Application to PHPC
The Sámi identity and sense of community appeared central to both that which was described as functioning well in death systems, as well as that which was said to be problematic. This study supports theoretical development about death systems, by critically evaluating transferability to other contexts.

d. Developing palliative care programs in indigenous communities: Lessons learned from Canadian First Nations communities

All authors: Luanne Maki, Fort William First Nation
Maxine Crow, Naotkamegwanning First Nation
Jeroline Smith, Peguis First Nation
Lori Monture, Six Nations of the Grand River Territory
Mary Lou Kelley, Lakehead University
Holly Prince, Lakehead University

Presenting Author: Holly Prince

Background: First Nations people in Canada are dying of illnesses where they could benefit from palliative care; however, there is currently little research evidence to guide the development of local palliative care programs. Our research “Improving End of Life Care in First Nations” (EOLFN) funded by the Canadian Institutes of Health Research (2010-2016) provides original data and an approach to addressing these gaps in knowledge.

Aims: This presentation describes a six-year research project focused on improving the end-of-life care in the four First Nations communities in Canada by developing community-based palliative care programs and teams.

Design/Approach: This research was a comparative case study design conducted in partnership with four First Nations communities in Canada. It adopted community capacity development as its theoretical perspective and a participatory action research approach. It describes a model that includes: local community development, regional partnerships, education, and community empowerment. Innovative strategies to address these needs were developed, implemented and evaluated.

Results: Each of the four participating communities developed a unique palliative care program based in community culture and context. In addition, a framework and a process for developing local palliative care programs and teams in Indigenous communities was created in the form of a workbook.

Conclusions: This research provides a Canadian example of implementing a public health approach to palliative care in an Indigenous context. The approach is grounded in local culture and context and can support other Indigenous communities interested in quality improvement and developing palliative care programs.

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Performance: Wake (Gladstone Room)
11:00 AM11:00

Performance: Wake (Gladstone Room)

Artist: Peta Murray

Title: Vigil/Wake

An intimate, two-part experience where we contemplate what matters most as a life ends, and together remember our dead.

 “…something altogether different, an immersive ritualised work.” Australian Stage, on Missa Pro Venerabilibus by Peta Murray (2016)

In this pair of works, designed to be experienced sequentially (vigil, then wake) participants are invited to contemplate their experiences of loss, before joining a work of communal ritual and ephemeral meaning-making with artist-researcher Peta Murray.

Vigil takes the form of an installation. It is designed to be experienced alone in short sittings (up to 10 minutes or so, but with the precise duration determined by the individual). Vigil employs sound, light, and other sensory prompts to invite silent contemplation and to call up memories. Vigil invites us to sit with the knowledge of our own mortality and the big and little losses of our lives. How do we meet such loss? How might we prepare for these endings?

After keeping vigil you will be invited to sign up for one of the three sessions of the companion work, Wake.

A collective ritual of memorialisation, Wake will be a space for creation and conversation, focused on each other, our lives and our loved ones. How do we remember those we have lost? And how may we mourn the unmourned?

An intimate experience in two parts, Vigil/Wake crosses the borders between art and health, asking how endings, grieving and even death itself  might be re-imagined as creative acts.


By Peta Murray and collaborators Jane Murphy and Rachel Burke.

Dates: 14, 15 and 16 October.

Times: Monday 14 at 1:30pm, Tuesday 15 at 11am, Wednesday 16 at 1:30pm

Location: Gladstone Room, Fairmont, Leura

Duration: One hour

Note: Only people who have attended VIGIL will be welcomed to WAKE. Numbers are limited and you will be asked to select a session time and to register after attending VIGIL.



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FILM: The 4 ingredients needed for a health death (Auditorium
11:00 AM11:00

FILM: The 4 ingredients needed for a health death (Auditorium

Dr Merran Cooper . CEO Touchstone Life Care Pty Ltd.
Alicia Watt. Filmmaker AliJam Productions Pty Ltd

Presenting Author: Merryn Cooper

FILM . 26 minutes.
Two segments of a 4 part series, edited together to show death as a natural part of life- to be celebrated and shared by all.

We interview Barry with pancreatic cancer who elected not to have the Whipples procedure, to die at home, with his carer, community, family and doula. We use artistry such as close ups , to compare a doula’s hands with the gloved hands in an ICU unit.

In India we immerse with a community based palliative team caring for the very poor. What they offer and what the families and communities do for each other.

We use a structural narrative of “The 4 ingredients needed for a healthy death
1. Relief from pain. Concepts of equity ,cost and availability, community as pain relief, different types of pain (existential)

2. Healing environment. We show differing places of dying eg home, hospital, on dirt village floors and in shiny ICUS And learn from all the experiences .

3. Healing presence. We explore roles of support (good and not so good)– in the west and in India

4. Personal beliefs and religions . How do these influence who, with whom and where someone chooses to die or be cared for? We show Christians caring for a Muslims in a Hindu country.

Artistic Value
The art makes our audience feel , learn and do something. That might be public and community care, or taking better care of themselves and their family. Emotion is invoked by silence, music, cinematography, and appeals to the senses (which is essential for transformative learning)

This piece of art is created by community - its featured people, its film crew and its audiences. It generates discussion and as a crowdfunded activity the audience is more invested in its message.

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Symposium: Compassionate workplaces (Misty's Room)
11:00 AM11:00

Symposium: Compassionate workplaces (Misty's Room)

Bonnie Tompkins, Jessie Williams and Robert Peacock

Within the field of Public Health Palliative Care, the term ‘compassionate community’ (CC) is used to describe communities of people who feel encouraged to engage with, and increase their understanding about, the experience of living with a serious illness, care, dying and grieving. Members in a CC understand that it is everyone’s responsibility and recognise that these experiences are a part of everyone’s journey through life. Since we spend about a third of our adult life working, workplaces also need to strive to make it their responsibility.
Pallium Canada, The GroundSwell Project (Australia), and Good Life, Good Death, Good Grief (Scotland) each have a national desire to create a cultural shift in the way ordinary citizens respond to death, dying, loss and care. This session will show how three national Not-for-Profits were able to show, not only the need, but the business case for why employers should reorient their environment to be a more compassionate workplace.
Pallium Canada – has created a toolkit that can be used by workplaces to help support both employers and employees dealing with caregiving, dying and grieving. The desired outcome of the approach is to reduce stigma, increase awareness of these experiences and comfortability felt by both employees who are dealing with these experiences and their colleagues who had the desire to support them. They will also share the process taken to create this toolkit and highlight some of the key articles used to validate the need for such a tool. Participants will have a better understanding of the literature, development approach and key stakeholders, overview of the topics covered in final product, and initial feedback from employers and employees.
The GroundSwell Project (GSP)- Reflections on the success and learnings from spending two years actively promoting compassionate at work. The focus has been on supporting workplaces to be better at dying and grieving, which has been both pro-active and re-active.
GSP has had some success at responding to an immediate need from work leaders to navigate the immediate challenges of supporting a colleague who has suffered an unexpected loss, however we are still learning what it takes for workplaces to invest pre-emotively. Based on our current engagement with workplaces, we can confidently say that on the whole companies do not know how to respond to an employee who has suffered a death of someone close to them.

GSP will share their variety of methods trialed to engage workplaces, such as breakfast meetings, sharing success stories from the workplace, creation of service delivery material and more. They will showcase case studies of corporate executive suffering a perinatal loss and social medial engage around bereavement leave being only 2 days.
Participants learnings will include start with your known network, identify compassionate leaders to build on what’s strong in the company culture, workshop material in line with business needs, and consideration of a Compassionate Employer Award.
Good Life Good Death Good Grief - Current findings from the Bereavement Friendly Workplaces project being undertaken by Good Life, Good Death, Good Grief in Scotland.

Good Life, Good Death, Good Grief has been working with a small number of workplaces around Scotland to understand and learn from their experiences of bereavement of staff members. The project was born out of initial research into the subject as reported in Good Life, Good Death, Good Grief’s 2018 report, A Road Less Lonely.

In the initial stages of the project, Good Life, Good Death, Good Grief met representatives from employers from different sectors and of different sizes, union officials, trade bodies and other third sector agencies to get a broad picture of bereavement in the Scottish workplace. As a result of these conversations, Good Life, Good Death, Good Grief has been collating existing resources and developing new ones to help workplaces to become more bereavement friendly. Work is now underway to help disseminate these resources around Scottish employers.

In this session, Robert Peacock from Good Life, Good Death, Good Grief will outline:

• Key findings from Good Life, Good Death, Good Grief’s research
• Challenges and barriers faced by employers in providing bereavement support
• Knowledge gaps and support needs of employers
• Resources that have proven to be helpful for employers
• Learnings from working with employers on this topic

Through the sharing of each diverse approach, participants will have a better understanding of the current supportive tools in this field. They will also gain an understanding of the collaboration and negotiation required to achieve buy-in from employers. This knowledge will aide them with the creation of their own compassionate workplaces and can be transferable to other environments where fostering compassion is met with increased push back, for instance, schools. Ultimately, this session will support the scale and spread of compassionate workplaces around the world.

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Concurrent Session (Oxley Room)
11:00 AM11:00

Concurrent Session (Oxley Room)

Chair: Sharon Hudson

a. Researching Compassionate Communities in Australia

All authors: Debbie Horsfall, Helen Psychogios, Rosemary Leonard, Alison Rahn

Presenting author: Prof. Debbie Horsfall

Compassionate communities and compassionate cities are emerging as an international strategy for implementing public health palliative care. There is also an emergent field of research documenting how these concepts can be operationalized, and what happens when they are. In this paper we will present research findings of a nation-wide compassionate communities’ project in Australia. In 2018 The GroundSwell Project, initiated two projects with a particular focus on community development and community-centered care: one was Blue Mountains Compassionate Communities and the second was the National Compassionate Communities Practice Forum, where over thirty communities from across Australia applied, with eight being finally selected. These communities nominated two representatives to be citizen researchers facilitated and mentored by researchers from the Caring at End of Life Research Team at Western Sydney University. The resulting practice-based research group also included the community lead of the Blue Mountains project. Research encounters consisted of: 1 x3 hour face-to-face research training session at commencement; 2 x 2-hour face-to- face focus groups; 4 x 2-hour virtual research group meetings and telephone and email support from the university researchers as requested/initiated by the citizen researchers over the life of the project. In effect, the group functioned as an action learning/action research group, developing data collection strategies and collecting their own data. Together we reflected upon strategies, barriers and opportunities as well as critical moments in operationalizing compassionate communities nationally. Our emergent findings highlight strategies of resistance and struggle, regardless of location with/in either health services or in the civic arena; the importance of developing language which speaks ‘both-ways’- to the dominant systems as well as the community; and, creative strategies to capture and document ‘what worked’ in the development of compassionate communities across Australia.

b. “We are all in this together”: Building capacity for a community centred approach to caring, dying and grieving in Australia

Dr Julieanne HIlbers, La Trobe University, South West Compassionate Communities Network

Network mapping and building formal and informal networks are key elements of Compassionate Communities community work. This presentation explores how the comprehensive assessments undertaken as part of the Australian program are enablers for mapping and enhancing social connectedness in relation to caring, dying, death and grief. It draws on practice based learnings from assessments undertaken in the South West of Western Australia from January - June, 2019 and the development of a networking wheel which assists assessors to map networks and make referrals.

c. Myanmar Community Health Care Delivery Model (MyHealth): An inclusive self-help group (ISHG) initiative for early detection and treatment of noncommunicable diseases

All authors: Prof. Anil Kumar Indira Krishnan, Technical Lead, Public Health, HelpAge International, Myanmar
Ms. Pyone Yadanar Paing, Health Officer, HelpAge International, Myanmar

Presenting author: Prof. Anil Kumar Indira Krishnan

Number of older people is growing substantially in Myanmar and the share is anticipated to increase from 9 % in 2014 to nearly 25 % by 2050. 68% of all of deaths are due to non-communicable diseases (NCDs) and some of the NCDs require palliative support. HelpAge International (HAI) currently implementing Strengthening public health capacity to respond to Myanmar’s disease transition a five years project supported by European Union aims to contribute for achieving universal health coverage. HAI developed Older Person’s Self-Help Groups (OSHGs) model, utilizes community participation and leadership from older women and men to address key issues for their community.
By incorporating health in to OPSHGs aims to provide referral services to patients and identify community based palliative care support for a sustainable solution to improve the quality of life at the later stage of the life of older persons.
A pilot initiative involves 7 OSHGs on screening for diabetes, hypertension, oral cancer and social mobilisation to improve access to NCD services using diagnostics equipment and guidelines for screening, referral and identification of palliative care requirements. Real time data were monitored, and patient information were provided to the nearest community clinics for follow up.
Preliminary findings reveal that out of 1254 screened, 30 % referred to the community clinics and there were 13 bed bound older persons who are currently suffering from stroke, cancer etc. The care givers reported that they need financial, social and psychological support. Another important observation was the interaction with the peer group members found to be great relief to the bed bound patients and caregivers.
Community based palliative care are associated with reduced health care costs and better psychological support to patients and caregivers. This innovative model would be appropriate in low resource setting where health human resources are limited for implementing palliative care.

d. Embeddedness of volunteers in Belgian palliative care services: A survey of volunteers across the health care system

All authors: Steven Vanderstichelen, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)
Prof. Joachim Cohen, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University)
Yanna Van Wesemael, Palliabru
Prof. Luc Deliens, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)
Prof. Kenneth Chambaere, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)

Presenting author: Prof. Kenneth Chambaere

Title: Embeddedness of volunteers in Belgian palliative care services: A survey of volunteers across the health care system

Background: The empowerment and engagement of volunteers and volunteer-professional collaboration in palliative care (PC) services can facilitate a more comprehensive contribution of informal care networks, provides a link with the community and aids to bridge the gap between professional and community care. Insights into volunteer embeddedness and how it can be improved can help shape and optimize supportive professional environments for volunteering in Compassionate Communities.

Aims: To describe volunteers’ involvement in organisation of care and collaboration with professionals, and how they evaluate this.

Design: Postal survey of 2273 volunteers across dedicated and generalist PC services in Flanders and Brussels in 2018.

Results: Response was 35%. Two thirds of volunteers are often to always informed about organisation of patient care and around half feel the organisation often takes their opinion into account, while a minority report having decision rights (18%) or autonomy (24%). For some, their organisation fails to inform (17%), consult (27%), take into account their opinion (21%), give them decision rights (20%) or autonomy (16%) often enough. Across healthcare organisations, volunteer-professional collaboration is (very) low, and mostly limited to information sharing – as opposed to task coordination or decision making. However, in dedicated PC services nurse-volunteer contacts are fairly frequent and often involve task coordination (46%). Ambiguity regarding tasks, agreements and/or rules (15%) and lack of information exchange (14%) are the most cited barriers to volunteer-professional collaboration. Volunteers seem least embedded in nursing homes and community healthcare services.

Conclusion: Some volunteers are open to a higher degree of involvement in the organisation of care in PC services. Collaboration with professionals seems lacking both in width and in depth. In Compassionate Communities, PC services, particularly those with strong community links, can endeavour to enhance the embeddedness of their volunteers and support them into more comprehensive roles as exponents of community care.

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Plenary 4 (BALLROOM)
9:00 AM09:00

Plenary 4 (BALLROOM)

Chair: Prof. Luc Deliens

Compassionate Cities: Their meaning and significance

Prof. Allan Kellehear

This talk outlines the historical and health care significance of Compassionate Cities. The hospice movement has developed from a service employing clergy, to one employing health care professionals, to one that has often developed into a service with volunteers. The public health movement, as it has in other areas of health care, has emphasised two important correctives to the idea of a profession-led end of life care - (1) communities must play a leading role; (2) This role should be a partnership with existing services; and (3) The role communities must play should be based on a culture of civic participation. The features of these compassionate civics are: participatory relations (everyone has a say), the development of care acknowledging cultural and social differences (policies not for the few but for everyone), the identification of support with social action (saying and feeling is pointless without doing), and finally, the best actions and policies are derived from cultural and end of life literacy. (informed understanding is crucial). The installation of these features - Learning, Community Action, and Compassion - into our world cities is essential if we are to bring a lasting change to end of life care beyond the ridges of mere professional services.

Bereavement support: From the poor cousin of palliative care to a core asset of compassionate communities

Prof. Samar Aoun

One of the modern public health paradoxes is the relative neglect of the experience of bereavement (though death is universal). The many negative consequences of bereavement, and the disruption of social relationships are primary determinants of both health and mortality. This puts the impact of bereavement squarely into a public health perspective that pursues health equity. Adopting and strengthening a compassionate communities approach is necessary, not only for end of life care for dying people but also along the continuum of bereavement support.


Guidelines propose that bereavement support should be matched to risk and need. However, many palliative care services continue to adopt an unhelpful blanket approach in offering bereavement support. So, who provides support to the bereaved; who needs bereavement support and to what extent, and importantly, who is perceived by bereaved people to have offered them support and was it helpful? Based on reported experiences of the bereaved in a national Australian survey, recruited through funeral providers, the majority of this support is provided in informal and other community settings by a range of people already involved in the everyday lives of those recently bereaved, whether care recipients received or did not receive palliative care. A public health approach to bereavement care is needed to support ‘everyday assets’ in the community without over-reach from professional services. The data from this survey provided empirical evidence for building a community’s capacity to provide the type of social and practical support advocated by the Compassionate Communities approach, which relies on identifying and developing local caring networks around the dying person and their family. This body of work, innovative in content, conceptual model and recruitment approach, has challenged the existing bereavement support structure and provision and has already influenced practice and policy.


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Installation: Vigil
8:00 AM08:00

Installation: Vigil

Artist: Peta Murray

Title: Vigil/Wake 

An intimate, two-part experience where we contemplate what matters most as a life ends, and together remember our dead.

 “…something altogether different, an immersive ritualised work.” Australian Stage, on Missa Pro Venerabilibus by Peta Murray (2016)

In this pair of works, designed to be experienced sequentially (vigil, then wake) participants are invited to contemplate their experiences of loss, before joining a work of communal ritual and ephemeral meaning-making with artist-researcher Peta Murray.

Vigil takes the form of an installation. It is designed to be experienced alone in short sittings (up to 10 minutes or so, but with the precise duration determined by the individual). Vigil employs sound, light, and other sensory prompts to invite silent contemplation and to call up memories. Vigil invites us to sit with the knowledge of our own mortality and the big and little losses of our lives. How do we meet such loss? How might we prepare for these endings?

After keeping vigil you will be invited to sign up for one of the three sessions of the companion work, Wake.

A collective ritual of memorialisation, Wake will be a space for creation and conversation, focused on each other, our lives and our loved ones. How do we remember those we have lost? And how may we mourn the unmourned?

An intimate experience in two parts, Vigil/Wake crosses the borders between art and health, asking how endings, grieving and even death itself  might be re-imagined as creative acts.By Peta Murray and collaborators Rachel Burke, Jane Murphy and Thembi Soddell.

Dates: 13, 14 and 15 October.

Times: Installation is open 8am to 6pm daily. No booking required, but be prepared for a brief wait as it may only be experienced one person at a time.

Location: The Secretariat Room, Fairmont, Leura

Duration: Up to the visitor

Note: This is an immersive work, using sound and light. Once you have attended VIGIL, you will be invited to attend a session of WAKE.



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The Dawn Chorus: Sing in your day in harmony with delegates (Misty's Room)
7:15 AM07:15

The Dawn Chorus: Sing in your day in harmony with delegates (Misty's Room)

We invite you to be part of The Dawn Chorus with song maker Rachel Hore. Immerse yourself in beautiful 3-part harmony that lifts your heart and connects our community in song.

A note from Rachel Hore.

I have been a choir leader in the Blue Mountains community for many years. Our choir brings people together from very different ages and stages in life - from parents with babies to people with terminal illnesses.

Many times over, I am moved by the way a simple song soothes and brings comfort, or can enliven us with energy, courage and joy.

Singing seems to get to the heart of things, connecting us without the need for many words


We will be learning 3 specially selected songs together during the conference, to which we’ll then add some simple harmonies. Whether you are a shower singer, a beginner, or have singing experience ALL ARE WELCOME!

You can listen to the sound files of the 3 songs in advance here:

You will also find a song sheet and further information below. Or just turn up and learn as we go.

To register your interest or for further information email rachel@rachelhore.comwith Dawn Chorus in the subject line.

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Giving sorrow words: Poetry as a gateway to grief literacy (WALKING workshop)
6:30 AM06:30

Giving sorrow words: Poetry as a gateway to grief literacy (WALKING workshop)

Elham Day


Author and psychotherapist Francis Weller cites a line from Austrian poet Rainer Maria Rilke: ‘I don't have much knowledge yet in grief, so this massive darkness makes me small.’ In this experiential workshop, participants will be invited to explore the rich history of grief poetry as way to peer into the darkness of which Rilke speaks. Sorrow filled verses have been penned across the centuries by writers and mystics, petitioning all who would listen to turn towards the shadowy and unfamiliar experience of grief. There is much the poet’s pen can offer to those working in, caring for, or receiving palliative care, and we petition you to lean into the learning. Through simple guided reading and writing practices in an outdoor setting, workshop participants will explore how a relationship to grief and death can be expanded beyond the personal into the communal, outwards even to the more than human world. It is the poets who remind us: the deeper sorrow carves into our being, the more joy we can contain (Gibran) – and that these two, joy and sorrow are interwoven as golden twine (Blake). Come and caress these shining threads of old and how we may more mindfully carry them with us in the everyday. No prior writing experience is necessary, and may prove to be of some benefit. Please bring a notebook and pen.

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